British Heart Foundation heart failure palliative care...

British Heart Foundation heart failure palliative care project report: The Glasgow and Clyde experience

British Heart Foundation heart failure palliative care project report: The Glasgow and Clyde experienceFinal Report October 2010

Author: Yvonne Millerick, BHF heart failure palliative care specialist nurse, NHS GG&C

Co-authors: Jackie Wright, BHF heart failure palliative care specialist nurse, NHS GG&C; Alison Freeman, Clinical effectiveness co-ordinator, NHS GG&C

Acknowledgements

The authors would like to thank:

All health and social care professionals who contributed to this project for their assistance and ongoing support, especially those people working across heart failure, cardiology, medical, care of the elderly, specialist palliative care, generalist palliative care, social, voluntary and primary care settings who took time out of their busy schedules to give expert advice and consideration to particular issues as they emerged.

Mr John Carson, Lead Nurse and the NHS, Greater Glasgow & Clyde Heart failure specialist nurse service for their ongoing contribution, participation, general hard work and evaluation throughout the project.

The NHS Greater Glasgow & Clyde’s GP Out of Hours Service.

Amy Bowen for her editorial input and to the Research and Evaluation Group for the BHF/Marie Curie Cancer Care Caring Together Programme for commissioning and overseeing the evaluation.

Mrs Lynda Blue, BHF Healthcare Professional Project Manager for writing the project bid during her role as lead nurse for the heart failure specialist nurse service in NHS Greater Glasgow & Clyde, and to the British Heart Foundation for providing the funding which made this project work possible.

Evaluation of this projectThis evaluation was funded by the Caring Together Programme. Caring Together is a partnership between Marie Curie Cancer Care, the British Heart Foundation and NHS Greater Glasgow and Clyde. Caring Together aims to develop an improved approach to the management of palliative care for patients in the advanced stages of heart failure and their carers.

Contents

Executive summary 1

Chapter 1 Background to the project 3

1.1 Heart failure and prognostic uncertainty 3

1.2 Heart failure services in Glasgow 4

1.3 Rationale for the heart failure palliative care project 4

1.4 Preceding projects 5

1.5 Terminology 5

Chapter 2 Project aims and objectives 6

2.1 Project description 6

2.2 Aims 7

2.3 Objectives 7

2.4 Key questions 8

2.5 Project personnel 8

Chapter 3 Project design and delivery 9

3.1 Project approach 9

3.2 Patient identification 11

3.3 Referral 11

3.4 Assessment 12

3.5 Planning care 12

3.6 Joint visits and collaborative working 12

3.7 Ethical issues 12

Chapter 4 Data collection 14

4.1 Method 14

4.2 Data sources 14

4.3 Development of the heart failure palliative care database 14

4.4 Data analysis methodology 14

Chapter 5 Results - Quantitative 15

5.1 Identification of group 3 patients 15

5.2 Demographics 16

5.3 Symptom burden 16

5.4 Hospital utilisation 18

5.5 Out of hours activity 19

5.6 Heart failure specialist nurse contact 19

5.7 Contacts with other professional services 20

5.8 Deaths 20

Chapter 6 Results – Qualitative 21

6.1 Carers understanding and concerns 21

6.2 Patients’ understanding and concerns 21

6.3 Joint working 21

Chapter 7 Discussion 23

7.1 Main findings 23

7.2 Implications 26

7.3 Future direction 27

Appendices: 28

1 Framework 28

2 Data tables 33

3 Carer analysis 40

4 Patient analysis 42

5 Staff questionnaires 43

6 Joint working 50

7 Advanced communication bid 51

8 Database specification 56

9 References 72

Heart failure palliative care 1

Executive summary

Heart failure is an increasingly common, chronic, progressive and debilitating condition with a significant physical, social and psychological symptom burden. Despite advances in the evidence based management of heart failure, mortality rates remain high and heart failure is associated with a mean life expectancy of 3.1 years from diagnosis. Sudden death is a significant feature of the syndrome, but equally, patients with heart failure have high utilisation rates of both secondary care outpatient and in-patient services.

Since December 2006, the NHS Greater Glasgow & Clyde Heart failure specialist nurse service (HFSNS) has been involved in a three year British Heart Foundation funded supportive palliative care project. The project aimed to systematically define a set of patients identified by the heart failure specialist nurses from their existing patient caseload who would be appropriate for a supportive palliative care approach. A framework was designed to identify, comprehensively assess and implement realistic goals of care for the patients and their caregivers.

A wholetime equivalent post was created to support the project and was staffed jointly by a heart failure specialist nurse and a specialist palliative care nurse. This partnership approach enabled the teams to share skills and support the heart failure specialist nurses (HFSNs) with joint visits and work-based learning opportunities, using the skills and experiences from the two specialties.

The following report describes the project, its aims and objectives and provides an analysis of the data gathered. Overall, the project aimed to consider whether a supportive palliative care approach can be encompassed within the existing HFSNs role; whether patients can be identified appropriately in view of such an uncertain trajectory; and the extent to which the supportive/palliative care needs of patients and their care givers is currently being met within the HFSNS.

Key findings from the projectThe project has highlighted that it is achievable to integrate a supportive palliative care approach effectively into the existing HFSN role. Some HFSNs demonstrated they were able to implement this approach effectively with minimal or no support, whilst others required additional and continued support, which was exclusively available from within the project. The report shows that it does require additional time from the nurses to take a more holistic approach to care and to engage in some of the complex conversations with patients and carers about priorities for care. Without additional time and ongoing support for some HFSNs it remains unclear whether this is sustainable within the constraints of the usual service.

The inclusion criterion identified a significant percentage of patients in the last months of life. A number of patients did not meet the inclusion criteria but nonetheless died during the project, many of whom were either still being optimised on evidence-based therapy or died suddenly. Given the uncertain trajectory of heart failure, this was not surprising. More work to develop robust and accurate inclusion criteria and increased HFSN experience in patient identification would be welcome.


Meeting the supportive palliative care needs of patients is most challenging where the focus of care is placed on the heart failure symptoms and pharmacological regimes, with less attention paid to the holistic needs of patients. It may be that adapting the standard assessment process to include consideration of holistic needs would improve earlier identification of patients and also help increase the skills and confidence of the HFSNs in engaging patients in discussions about their priorities for care.

Multi-professional working is a vital component of supporting patients with advancing heart failure, and there are examples within the project of the value of discussions and co-ordinated approaches to patient support that bring the HFSNs and specialist palliative care services together.

Education and training to support the HFSNS across care settings is vital and should be sustained, including access to advanced communication skills training. Further assessment of the training needs of the HFSNs, and particularly for the wider community of health and social care professionals who are involved in the care of patients with advancing heart failure, is also required.

Executive summary


Chapter 1 Background to the project

1.1 Heart failure and prognostic uncertaintyHeart failure is a common, chronic, progressive and debilitating condition that leads to extensive physical, psychological, social and spiritual problems.1 The Scottish Intercollegiate Guidelines Network (2007) define chronic heart failure as a “complex clinical syndrome that can result from any structural or functional cardiac or non-cardiac disorder that impairs the ability of the heart to respond to physiological demands for increased cardiac output.”2 Heart failure is not a diagnosis; it is a syndrome that is characterised clinically by breathlessness, effort intolerance, fluid retention, and poor survival.2 The commonest cause of heart failure is myocardial dysfunction; with about two thirds of this related to coronary heart disease (CHD), usually secondary to myocardial infarction.2 Heart failure is the only cardiovascular disease increasing in incidence.2 A combination of improved cardiological treatments and risk factor trends are thought to be responsible for this.1 It is estimated that 66,000 new cases of heart failure are diagnosed each year in the UK and that 912,000 of the population aged 45 years and over have definite/probable heart failure. Life expectancy is increasing and the incidence of heart failure in the 75-84 years age group is 7% and 15% in those aged 85 years and above.3 The lifetime risk of heart failure is one in five for both men and women. The high levels of morbidity associated with heart failure are demonstrated by high utilisations of both secondary care outpatient and in-patient services. NHS Greater Glasgow and Clyde figures for 2008 recorded 1890 hospital discharges with a primary diagnosis of heart failure. These generated a total of 24,230 bed days occupied giving a mean length of hospital stay of 12.8 days. The societal costs of heart failure are also extremely high and are estimated to be equivalent to 1.91% of the total NHS expenditure, with the predominant cost being hospitalisation.4

Despite significant advances in the evidence based management of heart failure, mortality rates remain high.4,5 Heart failure is, in most cases, incurable, and with the notable exception of lung cancer, heart failure is as “malignant” as many common cancers and is associated with a mean life expectancy of 3.1 years from diagnosis.5 The British Heart Foundation (BHF) estimates that 4% of deaths each year in the UK are attributable to heart failure and that 40% of deaths occur within one year of diagnosis with only 25% of men and 36% of women surviving to five years.1-5 Sudden death remains a significant feature; figures quoted in the wider literature range from 25-50% and can occur at any stage during the course of the heart failure disease trajectory. The increasing use of automated implantable defibrillators however, should positively impact on this risk.

Heart failure is characterised by an unpredictable decline with only a proportion of patients having a demonstrable deterioration. Many patients experience acute symptomatic exacerbations that respond positively to medical intervention. For others however, periods of decline can be relentless and interspersed with increasing symptoms that are distressing, debilitating and difficult to treat.6 This unpredictable disease trajectory invariably leads to uncertainty and subsequent prognostic paralysis.14,15 Heart failure very seldom comes in isolation and is often associated with co-morbid conditions, cognitive decline, polypharmacy and increasing social need.27 Consequently, living with heart failure and its co-morbidity places a considerable burden on patients and their care givers. It also presents several challenges for healthcare professionals working across different care settings.


Chapter 1: Background to the project

1.2 Heart failure services in GlasgowThe Glasgow heart failure specialist nurse service (HFSNS) is nurse-led and was established following a randomised controlled trial carried out in Glasgow between 1997-1999. The trial showed significant reduction in hospital re-admissions and hospital bed days related to heart failure due to left ventricular systolic dysfunction (LVSD). As a result of the positive outcome of the trial the Health Board in Glasgow funded the nurse-led city wide service, which commenced operation in July 2000 and has been successfully replicated throughout the UK.7

At present, patients in the service are referred either from cardiology outpatient clinics or following a hospital admission with symptoms of heart failure decompensation secondary to LVSD, normally confirmed using the gold standard of echocardiography.2 The aim of the service is to provide a combination of home visits and nurse-led clinic review for the purpose of providing ongoing education, skilful assessment and intensive monitoring following implementation of evidence based pharmacological and non-pharmacological care in accordance with the service and national guidelines.2,8 The service covers eight acute hospital sites across NHS Greater Glasgow & Clyde. This is the largest Health Board in Scotland, serving 1.2 million patients, covering almost a quarter of the entire population. The overall caseload of the HFSNS is approximately 1400 patients and 1.5 whole time equivalent (wte) heart failure specialist nurses are located at each of the acute hospital sites. Existing staffing levels are based on current levels of activity and service demand. This approach to heart failure management is evenly distributed throughout NHS Greater Glasgow and Clyde and has now become the standard model of heart failure care throughout the UK.

1.3 Rationale for the heart failure palliative care project The National Council for Palliative Care (2005) has asserted that patients dying from advanced heart failure remain disadvantaged compared to their peers suffering from cancer, in terms of symptom control management, communication and access to palliative care support networks.9 This view is echoed by the Scottish Partnership for Palliative Care (2008) and is increasingly reflected in a range of UK policy documents.10-13 Such inequitable practice arises from the historical focus of palliative care services being designed for those patients on a cancer trajectory, which is often associated with a quick and predictable functional decline within the last six to 12 months of life.14 By comparison, as described in Section 1.1, heart failure is characterised by an unpredictable decline with only a proportion of patients having a demonstrable deterioration.

Several studies also demonstrate high rates of unmet needs in areas of symptom management, communication, decision making, emotional support and co-ordination of supportive/palliative and end of life care. Patients with heart failure have reported a poorer quality of life than those with most other chronic progressive disease.16-19 They also lack knowledge about their condition and poor prognosis which inevitably leads to inappropriate goals of care and results in prolonged hospital re-admissions.18,19

Much of the research addressing the problem of heart failure tends to focus on the disease itself with an emphasis on pharmacological regimes to improve measurable outcomes. As a consequence, the experience of persons living with the disease is often neglected.17-19 The subjective perspective of those who suffer the illness is often dismissed by our pursuit for life prolonging medical invention.

There has begun to be a shift in attitude amongst leading cardiologists and palliative care specialists across the UK with respect to the supportive and palliative care needs of patients with heart failure.15 The needs of these patients and their carers for appropriately timed, clinically robust palliative care, sensitive to the prognostic uncertainty of heart failure yet still taking account of the significant symptom burden


experienced by many patients, is now acknowledged, at least in principle. Transferring this into everyday clinical practice however, remains challenging, particularly in the absence of additional clinical time, current knowledge gaps and the availability of additional resources. This project was launched in order to address some of the practical issues in identifying patients with heart failure who would benefit from a supportive/palliative care approach, and the aim to develop an approach to the delivery of that care within current service configurations.

1.4 Preceding projectsAn audit was conducted in 2005 by a local heart failure specialist nurse. The aim of this audit was to identify the number of patients from the heart failure nurse’s existing case load that remained NYHA III or IV and who had ongoing symptoms despite being on optimal tolerated evidence based heart failure therapy. The audit was conducted over a period of six months across five heart failure sites in Glasgow. During the six month audit period 73 patients were identified from a total patient caseload of 766 (10%). It was concluded that these patients could potentially benefit from a supportive palliative care approach.

1.5 TerminologyHFSNS Heart failure specialist nurse service

HFSNs Heart failure specialist nurses

LVSD Left ventricular systolic dysfunction

NYHA New York Heart Association

Group 3 Patients are regarded as group 3 following identification by the HFSNs for inclusion into the project

Key clinician A clinician who is well known to the patient, for example the consultant cardiologist, consultant physician and in a minority of occasions the general practitioner (GP). Throughout the project the key clinician was always a doctor.

Chapter 1: Background to the project


Chapter 2 Project aims and objectives

2.1 Project descriptionSince December 2006, the NHS Greater Glasgow & Clyde heart failure specialist nurse service has been involved in a three year BHF funded supportive palliative care project. The project set out to define a set of patients who could in the first instance be identified by the HFSNs from their existing patient caseload. Following identification, discussions would then take place with the key clinician to determine if they agreed that the patient was appropriate for a supportive palliative care approach. Using a consistently applied set of inclusion criterion as described in section 3.3, the participating patients were drawn from the existing HFSNS caseload. A framework (Appendix 1) was specifically designed and developed to support the HFSNs to identify, comprehensively assess and implement realistic goals of care for the patients and their caregivers throughout the project term.

Identification: The HFSNs used the table in (Appendix 1a) to categorise their existing patient case load into one of three groups.

l Group 1 were patients who were successfully optimised on evidenced based heart failure treatment and following a period of stability were discharged from the HFSNS.

l Group 2 were patients who were still being optimised on evidenced based heart failure therapy. Once these patients were optimised and they had a period of stability they would also be discharged from the HFSNS.

l Group 3 were patients who were considered by the HFSNs to be on optimal heart failure treatment however despite this they continued to be NYHA III or IV and had distressing and debilitating symptoms that were difficult for the HFSN’s to manage. These patients were looked upon by the HFSNs as being at higher risk of living and dying with their supportive and palliative care needs not being met.

Discussion: following identification of a group 3 patient, the HFSN would then initiate a discussion with the patient’s key clinician. The key clinician was either the consultant cardiologist, consultant physician and on very rare occasions the patient’s general practitioner. The aim of this discussion was to give the key clinician the opportunity to comprehensively assess the patient and to determine what the future goals of care should be. For some patients additional cardiological treatment to optimise the patients evidence based heart failure treatment was indicated and therefore measures to implement this treatment were commenced. For others it was decided that they were already receiving optimal cardiological treatment and it was therefore agreed that these patients could potentially benefit from a supportive palliative care approach (Appendix 1b).

Assessment: Assessment of patient and carer needs took many different forms and included multi-professional working with key people from all care settings. In one HFSNS site the assessment was conducted in the format of a weekly multi-disciplinary team meeting. A collaborative clinic style approach was undertaken at a second site and for other sites it was a one to one discussion approach between the HFSN and wider professionals working across the primary and secondary care interface. Examples of professionals who were frequently involved in the patient and carer assessments included district nurses, palliative care specialists, general practitioners, occupational therapy, benefits and social work advisors. This list was not exhaustive and changed in response to the patient and the care giver’s requirements.


Chapter 2: Project aims and objectives

To support key areas of assessment, a checklist (Appendix 1c) was created to support the HFSNs and the key clinician to co-ordinate the assessment discussion and decisions regarding future goals of care.

Documentation: From this discussion and assessment a management plan highlighting the patient and carer’s goals of care in relation to treatment status, advanced care planning and priorities of care was created by the HFSN (Appendix 1d). This management plan was agreed and signed by the key clinician and then verified by all key professionals who were involved in the discussion, assessment and ongoing delivery of care. A copy of this management plan was given to the patient’s GP who then registered the patient on the Gold Standard Framework and sent a copy of the management plan to the Out of Hours Emergency Care Service. An additional copy was also kept in a safe place in the patient and their caregiver’s home.

Fast track summary: In recognition that hospital admission for this group of patients could not always be avoided particularly in the absence of robust community diuretic protocols, a fast track summary (Appendix 1e) documenting the goals of care was created in collaboration with key professionals. This summary involved an alert being registered against the patients name on the hospital electronic system. Consequently when the patient presented to Accident and Emergency the alert would be highlighted and the hospital staff would be encouraged to read the fast track summary which would either appear on the electronic hospital system or would indicate the location within the Accident and Emergency (A&E) department where the document was stored. The fast track summary improved the opportunity to reduce the patient’s waiting time in A&E, offered the possibility of the patient being discharged back home following review and appropriate treatment. In circumstances where admission could not be avoided, it was hoped that the fast track summary would hasten the patient’s transfer to the ward area, inappropriate investigations could be avoided and that the overall hospital length of stay would be reduced.

This approach to heart failure management is not commonly encompassed within the existing heart failure management programmes across the UK. Similarly key aspects of assessment, discussion and documentation specific to priorities of care are not regularly encompassed within the HFSNs role in NHS Greater Glasgow and Clyde.

2.2 Aims Using a defined cohort of patients the main aim of this three year project was:

To identify patients with advancing heart failure disease earlier in their disease trajectory and to develop a professional inclusive approach to the delivery of supportive palliative care within the existing HFSN’s role.

2.3 Objectivesl To increase awareness amongst healthcare professionals, improve access and equity of supportive,

palliative and end of life care for persons living with heart failure.

l To decide if the inclusion criterion as described in section 3.2 is sensitive enough to identify appropriate patients.

l To encourage the integration of the palliative care philosophy into everyday heart failure clinical practice; recognising realistic goals of care at each stage of the disease.

l To support collaborative working amongst professionals by sharing knowledge, skills and expertise across different care settings.

l To collect data relating to the patient, their caregivers and the professional journey to underpin evidence that could be used to inform future clinical practice and further research.


Chapter 2: Project aims and objectives

2.4 Key questions Key questions to be answered throughout the project:

l Can a supportive palliative care approach be encompassed within the existing HFSNs role?

l Can patients be identified appropriately in view of such an uncertain trajectory?

l Are the supportive/palliative care needs of patients and their care givers currently being met within the HFSNS?

2.5 Project personnelOne whole time equivalent nursing post was created for a period of three years to lead the project, and initially consisted of two part time positions; one heart failure clinical nurse specialist (0.5wte) and one palliative care clinical nurse specialist (0.5 wte). However, due to changing employment circumstances, the palliative care hours became vacant for a period of six months until a replacement palliative care specialist nurse joined the project (0.3wte) for the remainder of the project term. Despite this, the project aims and objectives remained unchanged. A clinical effectiveness co-ordinator was also involved with the project and supported the database design and extraction and analysis of captured data. The HFSNs were actively involved in patient recruitment and inputting data onto the specific database fields as per project criterion.


Chapter 3 Project design and delivery

3.1 Project approach The project was funded by the British Heart Foundation for a period of three years and began in December 2006. The original project bid was to undertake the heart failure palliative care project across five heart failure sites in Glasgow. During 2007 however, Glasgow and Clyde merged following a service redesign and it was agreed that the project should encompass the three additional heart failure sites located in Clyde to ensure service equity.

Key project milestones

Key milestonesJan 07

– Mar 07

Apr 07 –

Jun 07

Jul 07 –

Sep 07

Oct 07 –

Dec 07

Jan 08 –

Mar 08

Apr 08 –

Mar 08

Jul 08 –

Sep 08

Oct 08 –

Dec 08

Jan 09 –

Mar 09

Apr 09 –

Mar 09

Jul 09 –

Sep 09

Oct 09 –

Dec 09

Jan 10 –

Mar 10

Network

Scoping execise

Design/develop project specific data base

Design/develop framework to support HFSNs

Implementation of database at each site

Support/guidance to HFSNs with database and framework

Patient recruitment

1 Aug 31 July

Development/ implementation of 2 pilot projects

May Oct

Data extraction/ analysis

Writing up projects findings

Year 1 Jan 2007-Dec 2007 Networking across NHS Greater Glasgow and Clyde to raise the project’s profile and to ensure professional engagement across all care settings. This involved presenting at a variety of meetings, educational forums and conferences.

Scoping exercise to explore existing frameworks that were being utilised elsewhere in the heart failure management programmes across the UK was conducted. From this we were able to establish that there was very limited information available and developing a framework to support the HFSNs in Glasgow would not be duplication of work carried out elsewhere.


Database: Designed and developed the heart failure palliative care project specific database in partnership with the clinical effectiveness co-ordinator for NHS Greater Glasgow & Clyde who has a designated remit for cardiology liaison within the acute sector.

Framework: Designed and developed a framework to support the HFSNs with patient identification. This framework included patient inclusion criteria, comprehensive assessment triggers, anticipatory management plan template and a fast track summary template for patients requiring hospital admission (Appendices 1a-e).

Year 2 Jan 2008 – Dec 2008Networking continued and invitations to present at various education forums and conferences increased.

Database: The development of the database and framework was completed, and therefore implementation, guidance and support were conducted at each of the eight HFSNS sites. Due to staffing difficulties at one of the smaller sites, it was agreed that this site would be exempt from the data collection process.

Recruitment: The formal 12 month patient recruitment into the project commenced August 2008

Year 3 Jan 2009 – Dec 2009HFSN support: Provision of ongoing support to each of the HFSNs continued following patient identification. This support took many forms and included joint patient home visits, collaborative discussions with key clinicians to determine goals of care. Meticulous data collection was supported and entered throughout the 12 month project term and entered into the appropriate database fields.

Development of pilot sites: In keeping with collaborative working, a six week programme was developed and implemented in Clyde in May 2009. This programme was collaboratively delivered and involved a variety of different health and social care professionals. This provided support to the patient and their caregiver and also supported the HFSN with ongoing communication and goals of care.

Following the success of this pilot a second project was developed and implemented at a busier HFSNS site, and involved collaborative working with a cardiologist who had a special interest in heart failure and palliative care. This pilot was jointly delivered in partnership with the palliative care clinical nurse specialist and patients were referred for comprehensive assessment and co-ordination of care following project identification by the HFSNs. Both these programmes are still operational to date. Patient recruitment into the project stopped on 31 July.

Data: Extraction and analysis of data was undertaken by the heart failure palliative care project nurse and the clinical effectiveness co-ordinator. This began Sept 2009 and was completed by Dec 2009.

Jan 2010 – Mar 2010Analysis and reporting of main findings was conducted and formally written in a report format.

Chapter 3: Project design and delivery


3.2 Patient identificationAll patients identified throughout the project were known to the HFSNS, had a confirmed diagnosis of heart failure secondary to left ventricular systolic dysfunction (LVSD) and were referred to the service following a hospital admission.

Patients were initially identified for inclusion into the project by the HFSNs using the following inclusion criterion:

l NYHA Classification III/IV

l Regarded by the HFSNs to be on optimal/target doses of evidence based heart failure therapy as per the local heart failure medical therapy guidelines

l Had progressive symptoms that were distressing and/or debilitating

l Required increased monitoring by the HFSNS eg home visits/clinic contact and/or a hospital admission

l Required frequent medication changes in response to difficult/resistant symptoms and/or change in their condition.

Evidence based heart failure medication

Patients identified by the HFSNs were regarded as being on optimal tolerated doses of heart failure evidenced based therapy which included one or all of the following:

l Ace inhibitor 54%

l Angiotensin receptor blocker 16%

l Combined Ace-I / ARB 3%

l Betablocker 68%

l Aldosterone antagonist 40%

l Loop diuretic 95%

l Thiazide diuretic 33%

l Hydralazine 3%

l Nitrates 16%

A combination of the above therapy was constantly tailored in response to individual patient needs and changing condition.

NB: This data represents whether the medication groups had ever been started, not necessarily whether or not they had been continued.

3.3 ReferralPatients were recruited to the project following initial identification by the HFSNs as group 3 and then following subsequent discussion and consent from the key clinician as having met the full inclusion criterion for the project.




3.4 Assessment As described previously in section 2, patients identified as meeting the criteria for group 3 were regarded as having advancing heart failure. The ensuing comprehensive assessment of these patients was undertaken by the key clinician and HFSN at each site to determine if additional cardiological treatment was required to improve clinical outcomes. If further cardiological treatment or device insertion was clinically indicated, this was pursued and a review date to assess the patient’s clinical response to the additional intervention was agreed. If no further therapeutic interventions were thought to be indicated, the comprehensive assessment encompassed discussions around care priorities such as symptom management considerations, cardiopulmonary resuscitation status, device deactivation and exploration of the patients anticipated preferred place of care options. Hospital admission for many patients with advancing heart failure cannot be avoided. Therefore it would be misleading to suggest to patients and their carers that home directed care could be implemented and sustained in all circumstances, particularly when the duration and specific characteristics of the disease trajectory is so uncertain.

3.5 Planning careFrom the assessment, key professionals were identified to support the planning and delivery of care. Discussions regarding planning care took many different forms across the HFSNS and ranged from a weekly multi-disciplinary team approach, a collaborative supportive palliative care clinic and one to one professional discussions involving a full variety of health and social care professionals. The HFSNs were encouraged to participate with joint visiting both in the acute hospital and community environment involving the district nurses, palliative care specialist nurses and professionals working with the hospice outreach.

3.6 Joint visits and collaborative workingThe purpose of the joint visits was to provide professional support for both the heart failure and palliative care specialist nurses and also to ensure that significant conversations around priorities of care for the patient and their caregiver were carried out in a supportive environment. These discussions were viewed as part of a process of planning care and never considered a one-off event. They required skilful facilitation in response to patient and caregivers questions, as well as the expertise and experience of both heart failure and palliative care professionals. It was hoped that by engaging in a person-centred approach, a key principle of palliative care, that it would encourage a shift away from a disease-centred approach. Furthermore, it is hoped that multi-disciplinary working would encourage an informal transfer of knowledge and skills and would increase confidence amongst the professionals working with the patient and their caregivers.

3.7 Ethical issuesThe project proposal was approved by leading service providers across NHS Greater Glasgow & Clyde by whom the project nurse was employed. The project was regarded more as service evaluation, and for this reason was not classified as research. There was no reference made to intervention groups as the current provision of care management within the HFSNS is designed around the plethora of evidenced based heart failure guidance (Greater Glasgow & Clyde Medical Therapy Guidelines and SIGN). The project outcomes will be aligned to the key project questions and the recently launched supportive palliative care


standard highlighted in the NHS Coronary Heart Disease Quality Improvement Scotland 2010. Additional consent was given by the lead consultant cardiologist and lead nurse for the HFSNS who signed off the original project bid application. As the project nurse is currently working within the HFSNS across NHS Greater Glasgow & Clyde, access to the patient sample was approved. Confidentiality was regarded as a critical ethical issue and disclosure of information was stored on an NHS password protected computer database which was secured in one of the HFSNS locked offices. The HFSNs at each of the eight sites across NHS Greater Glasgow & Clyde used strict inclusion criteria to identify appropriate patients. Patient consent was not required for the project as all patients had previously given their consent upon referral to the HFSNS and existing standards of care delivery remained unchanged. The project was conducted with the highest level of integrity throughout the three year project term.



Chapter 4 Data collection

4.1 MethodData collection and data entry were undertaken by HFSNS staff who were provided with a period of induction and ongoing support by the project nurse. Unfortunately duplication was required onto both the existing heart failure database (ATHENA) and the project database and it is important to acknowledge that it was difficult for the HFSNs to do this within the time constraints of their workload. We are grateful that staff were so supportive in facilitating such additional data collection where possible.

4.2 Data sourcesInterim analysis highlighted that there were gaps in the level of information available across some of the participating sites. To both augment and validate the data collected within the ATHENA and project databases, we accessed additional information from a variety of sources:

l PMS Systems: All three independent patient management systems in use across the acute sector of NHS GG&C which included biochemistry, haematology and admissions modules

l GP Out of Hours system: Access was available to access the system used across NHS GG&C to monitor patient contact outside the regular working pattern of the HFSNS

l SMR01 Data: Scottish Morbidity Record for Inpatient Admissions. This was requested from the Department of Information Services at Health Board in order to review and validate admission cause and length of stay.

4.3 Development of the heart failure palliative care databaseIn response to the limited data profile on the existing heart failure database currently used across all heart failure sites in NHS GG&C, an additional project specific palliative care database was designed by the project nurse and clinical effectiveness co-ordinator for the duration of the project. It included the main clinical sections already recorded on ATHENA and was enhanced with the facility to also record:

l Patient and carer concerns

l An extensive symptom assessment form

l Professional services log

l Bereavement summary

The database specification is available as Appendix 8.

4.4 Data analysis methodologyData was uplifted from each participating site by the clinical effectiveness co-ordinator. It was centrally merged, then analysed independently of both the HFSNS and the project nurses using statistical software (SPSS v16.0). The raw data collected is shown through a series of tables (Appendix 2).


Chapter 5 Results - Quantitative

5.1 Identification of group 3 patientsl The data collection period for the project was for 12 months from 1 August 2008 to 31 July 2009.

l Total number of HFSNS caseload during this period (Service caseload SC) = 1400.

l Total number of patient deaths during this time period from within the HFSNS (SD) = 278 (20% of SC).

l Total number of patients identified by the project (Patients identified PI) =126 (9% of SC).

l Of the 126 patients identified by the project (PI), number of deaths (PD) = 57 (45% of PI and 20% of SD).

l Following a review of all the HFSNS deaths (over the same period), a further 54 deceased patients were found to have met the project inclusion criteria but were missed by the HFSNs (Potential miss PM). Had these patients been identified, the total number of potential patients identified by the project (PPI) would have been (PPI) =(PM) + (PI) or 180 patients.*

l Of the 180 potential patients identified by the project (PPI), a total of 111 died (PPID) = (PD) + (PM). This is 62% of (PPI).†

l There were a remaining 167 patients who died who could not have been identified by the project because they died suddenly, were still titrating at the time of death or died from other causes, including malignancy or stroke.

* As these patients were not identified by the project, they are not included in any of the project data analysis. Additionally, there may also have been

some further patients who would have met the criteria but who did not die during the time period.

† We know that this percentage is an estimate of the real percentage – given some may have died outside of the time period and some who may

have met criteria (but who were not picked up) have not been picked up on review because they did not die during the period.

Deaths out with project scope

H1 H2 H3 H4 H5 H6 H7

45

40

35

30

25

20

15

10

5

0

No

of p

atie

nts

Sudden

Other

Titrating

Potential miss

Hospital site


It is difficult to determine the number of still-active patients who would potentially have met the group 3 criteria without reviewing each patient record individually, and for this reason, it is important to highlight that the number of group 3 patients could be significantly higher.

5.2 Demographics

5.2.1 Sex Many more men (74%) than women had their care defined within the supportive and palliative care project. This varies from observed recruitment to the HFSNS where the split has been consistent at around 60% male and 40% female (Appendix 2, Table 1).

5.2.2 Age The age range is 18 years to 100 years with a median of 75 years which is similar to the annual age range reported by the HFSNS (Appendix 2, Table 2).

5.2.3 Deprivation Within the project, 40% of patients lived within areas of high deprivation in contrast to the expected levels of around 58% seen in the HFSNS annual reports. However, it should be noted that these observations are historical and are prior to the inclusion of Clyde sites (Appendix 2, Table 3). This would support that overall deprivation within these Community Health & Care Partnerships is lower than those in Greater Glasgow as highlighted by data from the Scottish Neighbourhood Statistics Office (www.sns.gov.uk). Previous HFSNS reports have traditionally used the Carstairs Index (“Deprivation and Health in Scotland” Carstairs V, Morris R; Health Bull (Edinb.1990 Jul; 48 (4):162-75) to analyse patient demography and it was also used for the purpose of this report in order to establish a robust comparison, rather than use data from the most recently published Scottish Index of Multiple Deprivation (2009).

5.2.4 EthnicityThis has not been previously recorded within the ATHENA database so there is no baseline data available to measure against, but within the project only 3% were of non-White origin, all of whom were of Asian descent (Appendix 2, Table 4).

5.2.5 Social statusOf the 126 patients identified, only 33 (26%) lived alone (Appendix 2, Table 5). Of the patients who did not live alone, 74% of them relied on their spouse to provide their care. The remainder were supported by children, siblings or other (Appendix 2, Table 6).

5.3 Symptom burdenShortness of breath, symptom and pain control have been highlighted as patients main concerns at end of life 18,21 with the fear of death often being associated with the onset of these symptoms.5,18,21

The Edmonton symptom assessment tool20 was used to create consistency with symptom recognition and scoring of patients within the project. However, it must be recognised that the use of any tool is dependent on the knowledge and skill of the healthcare professional, and it can be extremely subjective



Admission episodes/Bed days for deceased patients

from the patient’s perspective. Furthermore, throughout the project, although this was recommended as a desirable measure of the patient’s symptom burden, only 82 patients (65%) had their symptoms recorded. From those patients who did have an Edmonton Assessment carried out, dyspnoea, fatigue, weakness, insomnia, cough, anorexia, PND and generalised pain excluding cardiac pain were the main symptoms reported. Other symptoms routinely reported are highlighted in Appendix 2, Table 11.

Sadly, these findings highlight the significant symptom burden often tolerated by this patient group as reflected in the wider literature.1,5,18 Such findings may support the use of a recognised tool to promote improved symptom assessment and management in everyday clinical practice. 26

Baseline aetiology of heart failure was largely ischaemic (75%) and the majority had severe LV impairment (38%), 66% were NHYA III and all had a range of co-morbidity, the most prevalent of which was renal impairment (48%) (Appendix 2, Tables 7-10).

5.3.1 NYHA classificationThe measurement of NYHA classification was recorded at each consultation for all patients. This classification selected for the purpose of the project was the one which has been the most consistent over time. As expected, 66% of patients were recorded as being NYHA III. Of the four patients whose NYHA class was unrecorded on the Athena dataset, information regarding their classification was captured from the HFSN assessment documentation that was communicated to the GP in the form of a letter following either a home visit or clinic consultation. From this it was possible to establish that these patients were also either NYHA class III or IV (Appendix 2, Table 9).

5.3.2 Co-morbidityAs heart failure seldom comes in isolation, many of the project patients had one or more co-morbid diseases such as angina, asthma, chronic obstructive pulmonary disease, diabetes and renal impairment which was noted to be the most common (48%) amongst this group (Appendix 2, Table 10).

H1 H2 H3 H4 H5 H6 H7

700

600

500

400

300

200

100

0

60

50

40

30

20

10

0

Tota

l bed

day

s

Total admission episodes

Hospital site

Total bed days

Total admission episodes



5.4 Hospital utilisationHospital admissions were reviewed on two levels; patients who were still alive at the end of the data collection period and those who died during this period. For the 57 deceased patients, a full review of all hospitalisations in the year prior to their death was completed.

Length of stay data for patients who were still alive was collected upto and including 31 July 2009. However, as some of them were still inpatients at this date, it was not possible to capture the accurate number of hospital bed days that each patient incurred beyond this date. For this reason, such data should be regarded as being taken from a snapshot in time and the number of bed days incurred could be greater for those reasons cited above.

5.4.1 Hospital admission ratesSixty-nine live patients generated 129 admissions ranging from one to eight (median=2).

Fifty-seven deceased patients generated 231 admissions ranging from one to 10 (median=3) (Appendix 2, Tables 12, 13).

5.4.2 Cause of admission During the period of data collection, IT systems across each of the eight participating sites were in transition and three independent applications were operational at the time of analysis. In the absence of comparative information, the use of SMR01 data was identified as a means of validating admission cause. The parameters interrogated ensured that heart failure was identified as being a necessary requirement within the first four diagnostic categories and these events were then mapped to patients identified within the project database. Enhanced grouping of ICD-10 classification codes identified the following:

l Cardiac cause 68% (including MI, chest pain, angina, AF and HF)

l Respiratory cause 12% (including COPD, pleural disease and pneumonia)

l Renal failure cause 4%

l Malignant-related cause 2% (including both primary and metastatic disease)

l All other causes 14%

Despite being indicative of underlying heart failure, conditions such as oedema and dyspnoea were grouped to “Other” as there was no way of identifying whether or not these specific episodes were directly related to the patients’ pre-existing condition.

5.4.3 Hospital length of staySixty-nine live patients experienced a total of 1788 days in hospital ranging from one to 255 days (median=23). Fifty-seven deceased patients generated a total of 2870 days in hospital, ranging from one to 266 days (median=43) (Appendix 2, Tables 12, 13).



5.5 Out of hours activityIn an attempt to measure the levels of contact that these patients meeting group 3 criteria generated outside of the HFSNS, access to the ADASTRA database held by NHS Greater Glasgow & Clyde’s GP Out of Hours Service (OOH) enabled review of all deceased patients in order to give as complete a picture as possible on the contact levels with OOH for the year prior to death.

Thirty-eight of the 57 deceased patients identified within the project (67%) had at least one contact with OOH ranging from one to 10 (median=2) and 81 of these contacts (89%) took place out with the regular hours of the HFSNS. (Appendix 2, Table 14)

l The majority of OOH contacts resulted in a home visit (51%)

l A total of 29 admissions were made following OOH contact (32% of all outcomes)

l Six patients had their deaths confirmed by OOH staff at a home visit (11%)

There were a vast range of diagnoses recorded but the main categories were:

l Respiratory 32%

l Chest pain 15%

l Medication issues 9%

Furthermore, of the additional 54 potential group 3 patients, 31 of them (57%) generated a total of 69 contacts with the OOH service. As these cases were unconfirmed within the project, review of their OOH activity was not carried out in any more detail.

5.6 Heart failure specialist nurse contactThe main HFSNS contacts such as home visits and nurse-led clinic appointments are well-documented within ATHENA. However many of the “softer” contacts such as telephone calls to other healthcare professionals etc. are not routinely recorded and are therefore much less accurate. (Appendix 2, Tables 15a, 15b)

l A total of 885 home visits were made to 85 patients during the period of data collection, ranging from one to 30 (median=7).

l A total of 337 nurse-led clinic appointments were carried out for 57 patients, ranging from one to 30 (median=3).

l A total of 211 contacts with palliative care involvement were made for 38 patients, ranging from one to 21 (median=5).



5.7 Contacts with other professional services The majority of heart failure patients will require increased support from a range of other healthcare professionals as their condition continues to deteriorate. Findings from the project show that such multi-disciplinary activity is not well recorded at present. From the limited data available, we were able to identify that the three most common areas of additional input came from:

l District nurses 25%

l Social work 24%

l Occupational therapists 17%

It is a concern to acknowledge that only a quarter of the patients identified by the project were likely to have received additional support to enhance living with a disease that is already characterised by severe symptom burden and reduced functional decline.

5.8 Deaths During the data collection period a total of 278 deaths occurred within the HFSNS from a total active caseload of 1400 patients (20%), 57 of whom were identified within the project (45% of the observed cohort) (Appendix 2, Table 16).

As previously stated, the project nurse and the clinical effectiveness co-ordinator reviewed all deaths that occurred during the project period and using group 3 criteria found a further potential 54 patients who could have been included in the project numbers. If we add these patient deaths to the 57 deaths that were identified within the project, this gives a total of 111 group 3 deaths, or 40% of the total service deaths. Additionally, if we add the 54 patients to the total of 126 group 3 patients that were included in the project this gives us 180-111 deaths = 62% of the group 3 patients died during the project term.

The remaining 167 deaths in the HFSNS were patients who were excluded from the project for the following reasons:

l Patients still being optimised with evidence-based HF therapy (42%)

l Sudden death (19%)

l Death occurred for other reasons not associated with HF (14%)

5.8.1 Preferred place of deathFor those who died during the period of data collection, 11 (19%) had no preferred place of death recorded (Appendix 2, Table 17). Anecdotally, this figure is comparable with other specialities and for this reason has been highlighted as a priority by National Education for Scotland and The Living & Dying Well Action Plan (2009).

5.8.2 Actual place of deathFor those patients who did have a preferred place of death recorded, 18 of them (39%) passed away in the place of their choice (Appendix 2, Table 18).



Chapter 6 Results – Qualitative

6.1 Carers understanding and concernsAlthough there is a dearth of supporting documentation around carers’ concerns, the following information was captured during patient and carer consultations. These consultations took place in a variety of clinic and home care settings and were carried out in a timely and sensitive manner. The key themes highlighted are further supported throughout the wider literature.21,23

l Carer understanding of prognosis and disease progression varied from having a poor understanding to fully aware of condition and decline.

l Carer concerns centred on their ability to cope day to day and being able to do the right thing for their loved one. Others felt unhappy about their loved one knowing the full extent of their deteriorating condition.

l Challenging issues included their ability to cope and sustainability of coping mechanisms particularly within complex domestic circumstances, such as drugs and alcohol (Appendix 3).

6.2 Patients’ understanding and concernsThe following key themes have been captured in relation to patients’ understanding of their illness and changing condition.

Patient understanding of prognosis and disease progression varied from poor understanding (11%) to being fully aware of the potential decline associated with their heart failure condition (21%) (Appendix 4).

Patients concerns in relation to their condition changing centred on reduced function and mobility, loss of independence, relationships and appetite. Increased symptom burden included dyspnoea, fatigue, weakness and oedema. Other concerns included loss of confidence, increasing dependence on others for support, worry about the effect their dependency would have on their caregivers and becoming housebound or requiring hospital admission.

Challenging issues ranged from; being the main carer for their spouse, managing stairs, reduced function, ability to cope with everyday activities, acceptance of failing condition and associated symptom burden particularly increasing dyspnoea, insomnia and oedema. Equally challenging was accepting additional support and the loss of spontaneity such as going on holiday etc (Appendix 4). These themes are endorsed in the wider literature.18,21

6.3 Joint working One of the key elements of this project has been the opportunity for the HFSNS to work jointly with the project palliative care clinical nurse specialist and also wider collaborative working with other health, social and palliative care services across different care settings within NHS GG&C. Using a variety of evaluation methods such as staff questionnaires, reflective narratives and professional accounts (Appendix 5), the following recurring themes have emerged as potential key areas that require additional and ongoing support:


l Advanced communication

l Different ethos of care

l Time and competing priorities

l Education and training gaps

l Informal transfer of knowledge and skills

The palliative care clinical nurse specialist has been seconded (0.3wte) for the last 12 months of the project term, and although uptake of joint patient visits was initially slow, this resource has now proved invaluable for supporting the HFSNS and for the informal transfer of knowledge and skills between two specialities (Appendix 6).

Chapter 6 Results – Qualitative


Chapter 7 Discussion

7.1 Main findings

1. Can a supportive palliative care approach to care be encompassed within the existing HFSNs role? Although some HFSNs across NHS GG&C demonstrated that it is achievable to integrate a supportive and palliative care approach effectively into the existing HFSN role, others have found this to be more difficult. The supplementary information that was required for the database focused more on the person’s experience of living with the disease and less on the actual disease itself, resulting in longer patient and carer consultations. This naturally caused some concerns amongst the HFSN team particularly in relation to the additional time required for the patient and a carer consultation, that very often on average was one to 1.5 hours as identified in a time log (Appendix 5). This is compared to existing heart failure patient clinic consultations of 15 minutes and approximately 20 to 30 minutes for a regular home visit consultation. The ensuing communication with wider health and social care professionals is also initially very time-consuming (Appendix 5).

In addition, as highlighted in the staff questionnaire and the learning needs assessment focus group carried out by the NHS GG&C lead nurse for non-malignant disease and the palliative care nurse consultant (Appendix 5), specific training and educational needs were identified by the HFSNS.

One of the key elements of this project has been the opportunity for the HFSNS to work jointly with the project palliative care clinical nurse specialist and also wider collaborative working with other health, social and palliative care services across different care settings within NHS GG&C. If the HFSNS is to encompass a supportive palliative care approach into the existing role, greater collaborative working with key professionals across all care settings needs to be encouraged. Although this may initially be time consuming and impact on the HFSNs time, it should in the longer term, increase both confidence and efficiency of the HFSNs interactions with patients as they improve their skills and experience.

2. Can patients be identified earlier despite an uncertain and unpredictable disease trajectory?Prior to this project, patients were often only identified as nearing the end of life when they were in the last few days or hours of life. The project has demonstrated that using the specific inclusion criterion, it is possible to identify a significant percentage of patients who are months, rather than days away from death. What it also highlights however, is that a significant number of patients who did not meet the inclusion criteria died outside the project without their supportive and palliative care needs being met. Furthermore, although a small number of patients did not require hospitalisation in the 12 months prior to their death, a significant number of patients did. It is crucial, therefore, that hospital admission/readmission is considered, along with an increased need for home visits as a prognostic indicator particularly if the patients are being managed by a HFSN. More work to develop more robust and accurate inclusion criteria and improved HFSN skills in patient identification would be welcome.


3. Are the supportive palliative care needs of patients and their care givers being met within the existing HFSNS?

The project clearly highlights that unfortunately many patients within the HFSNS continue to live and die with their supportive and palliative care needs being unmet. Accurate identification of patients who are approaching the end of life remains challenging, and further work on biometric and clinician-assessed prognostic indicators that would help the HFSNs accurately identify the appropriate patients would be welcome.

The holistic approach that encompasses physical, social, spiritual and psychological aspects of care is largely absent from the current HFSNs assessment. For reasons already cited above, more emphasis is placed on the heart failure symptoms and pharmacological regimes. It may be, that adapting the assessment process to include a more holistic assessment would improve earlier identification of patients and also help increase the skills and confidence of the HFSNs in engaging patients in discussions about their priorities for care.

Providing a more holistic approach to care will inevitably take more time and this poses particular challenges for an already heavily-committed service. The HFSNs currently work within relatively short consultation times (15-20 mins) and it is difficult to engage in the often lengthy and complex discussions about care toward the end of life without an increase in visit length. It may be, though, that by incorporating some of the principles of a supportive palliative care approach into the standard assessment, the additional time requirement will be distributed more evenly over the patient’s time in the HFSNS and avoid the significant peaks in time commitment that were required during this project.

Project achievementsData collection: The data collection process that has taken place over the seven HFSNS sites has, in general, been successful and it is hoped that key areas highlighted will be used to underpin enhanced clinical practice and the undertaking of future research proposals.

Joint working: One of the key elements of this project has been the opportunity for the HFSNS to work jointly with the project palliative care clinical nurse specialist and also wider collaborative working with other health, social and palliative care services across different care settings within NHS GG&C. This informal transfer of knowledge and skills has increased awareness of the extensive needs of people living with heart failure and has proved invaluable to a number of different service providers and in particular the HFSNS. Further evaluation on the key aspects of joint working will follow in a separate report.

The framework to support the HFSNS to identify high risk patients meeting the criteria of group 3 is now being used routinely as a trigger to have more formal discussions with the key clinician. The outcomes of these discussions are used to inform the future goals of care in relation to either further cardiological treatment or continuation of a supportive/palliative ethos of care that realistically incorporates the priorities of care for the people living with advancing disease. 19

Anticipatory care planning (ACP) is a key element of the Living and Dying Well Action Plan (2008).The ACP process involves ongoing discussion between the patient and their care providers and focuses on their future care preferences. This sounds ideal in theory, however from the experience of the project this has been very difficult to facilitate in clinical practice without additional allocation of time/resources. To date, 17 ACPs have been implemented across NHS GG&C with varying degrees of success. Evaluation of the ACPs and their effectiveness is not within the remit of this project, however the following observations have been noted. Hospital admission could not always be avoided; but knowledge that the patient had advancing disease and did not wish to be hospitalised meant that this was only ever considered as a last



resort. There is potential to reduce the number of hospital bed days with the support of an ACP and this area in itself merits more robust exploration. Enhanced communication across different care settings and in particular with GPs and the OOH service was achieved. And finally, there was a general sense of relief/peace from families who felt informed and knew what to reasonably expect from their loved one but more importantly the health and social care professionals caring for them.

Supportive palliative care clinic: In response to many of the difficulties cited throughout this report, it was agreed that a six month supportive palliative care clinic pilot would be established at one of the HFSN sites. The purpose of this clinic was to review the high risk patients meeting group 3 criteria identified by the HFSN. Following a comprehensive assessment by the cardiologist and HFPCSN the patient and their caregiver’s needs and preferences for care are then facilitated by the HFSN in collaboration with other multi-professionals. This pilot was two-fold primarily to provide improved care for persons living with advancing disease and secondly to provide an opportunity for the HFSNs to use as an educational resource to increase their knowledge and communication skills by observing and participating in a different ethos of care.

Multi-professional working: A second pilot is operating at one of the other HFSNS sites and includes a weekly multi-professional team meeting, led by the lead cardiologist and palliative care consultant. The HFSNs identify high risk patients meeting group 3 criteria who are to be discussed at this meeting and their preferences of care are identified and facilitated accordingly. The HFSN remains the key worker throughout. Patients and their caregivers who have agreed that the emphasis of care should be more palliative, are given the opportunity to attend a six week programme offered by the local hospice. This programme includes; discussions around changing condition, symptom management, social, psychological and spiritual care needs, and a representative from all of these specialities attends at least one session. Additional follow-up is tailored to suit individual patient and caregivers needs and may include alternative therapies to improve both patient and caregivers quality of life. This multi-professional working encourages an informal transfer of knowledge and skills.

Education and training has been highlighted as a key area for development throughout this project and in particular the need for further training in communication. Following a successful bid application (Appendix 6), £10,000 was awarded to the NHS GG&C Cardiology Directorate to enable 30 healthcare professionals to attend a two day advanced communication course and a further 10 healthcare professionals to attend a dignity and respect training day. Evaluation following attendance at these days will inform future training events.

An educational module has been specifically developed at Glasgow Caledonian University by the project nurse in partnership with cardiology and palliative care professionals from across NHS GG&C to support all professionals with the management of persons living with advancing heart failure disease. The module is available at both degree and Masters level study and is delivered twice per year.

In collaboration with all the hospices across NHS GG&C it has been agreed that the HFSNS will be invited to attend and participate in the regular study events that are currently offered to the palliative care professionals. It is hoped that this will sustain knowledge acquisition and long term collaborative working.

The project nurse has devoted much resource to networking, learning and education across Glasgow, Scotland and the UK. Although this has taken many forms it has mainly centred on the delivery of presentations and discussion forums totalling approximately 145 over the three year project term.



7.2 Implications

Key recommendations for practice

The NHS Quality Improvement Scotland Clinical Standards for Heart Disease was launched April 2010.

Standard Statement 18

Patients with heart disease who remain symptomatic despite optimal treatment have access to supportive and palliative care according to their needs.

The essential criteria highlights that patients should be identified, assessed and an individual management plan covering all aspects of care, including advanced planning around device deactivation, should be created, documented and communicated to all relevant services including the OOH. This plan is to be reviewed quarterly.

For this standard to be met within the HFSNS, the following key recommendations need to be considered and implemented at each of the HFSNS sites.

Recommendation 1: Holistic assessment using evidence based assessment tools that encompass social, physical, spiritual and psychological aspects of care should routinely be employed and documented for each patient within the HFSNS. The project highlighted that it is conceivable to identify patients who could benefit from a heart failure palliative care approach using the inclusion criteria. It equally demonstrated that patients who did not meet the inclusion criteria, and died whilst still being optimised, could also have benefited from this approach to care.

Recommendation 2: Proactive identification of group 3 patients who meet the project criteria within the defined heart failure caseload should continue and the inclusion of significant conversations to identify priorities of care should become integral to the HFSN role.

Recommendation 3: The HFSN should be the key worker/co-ordinator for high risk patients meeting group 3 criteria particularly as there will be a greater need for multi-professional working and co-ordination of care as the people living with heart failure condition and circumstances change.

Recommendation 4: Information gathering should include disease specific details and supplementary information around the holistic assessment, significant conversation, priorities of care and person specific information in relation to patient and carer concerns. These additional fields are already being considered for inclusion in the developing heart failure database. This change will support the required documentation and communication that is essential for the creation of anticipatory care planning.

Recommendation 5: Continued multi-professional working across all care settings should be supported and facilitated wherever possible for all patients within the HFSNS.

Recommendation 6: Although patients meeting group 3 criteria may be considered at higher risk of dying with unmet needs, consideration must also be given to all heart failure patients who are potentially at risk of dying whilst still being optimised on evidence based heart failure therapy, or who may die suddenly. For this reason, all heart failure patients and their care givers deserve a patient centred approach to care that encompasses assessment of their needs and is responsive to condition change and/or social circumstances as they develop.

Recommendation 7: An ongoing system of education and training to support the HFSNS and palliative care professionals across care settings needs to continue to ensure that the enhanced knowledge, acquisition of skills and collaborative working that is already taking place is regularly encompassed within the HFSNs role. Further robust research addressing training needs of the HFSNs and the wider health and social care professionals is required.



Recommendation 8: Systems that encourage comprehensive assessment and open and honest discussions are required to be implemented. Particularly, within the acute care settings to ensure that inappropriate goals of care and subsequent prolonged hospital admissions as highlighted in this project are avoided for this patient group.

7.3 Future directionThis project aimed to determine whether patients with heart failure requiring supportive and palliative care could be identified and their needs met within the current HFSNS resources. A systematic approach was developed and implemented to identify patients and meet their care needs. The HFSNs introduced the lessons and processes from palliative care into their practice. Although extending palliative care to non-malignant conditions features significantly on the political health and social care agenda, the evidence as to how we deliver this change in clinical practice is still in its early stages. However, there has been a very positive shift in attitude across all care settings over the last 12 months. It is for this reason that optimism and enthusiasm prevail.

The findings within this report support this change and although the philosophy of cure still pervades within heart failure generally. It is apparent that advances are being made, albeit slowly, to understand and appreciate that a different ethos of care which recognises the person’s experience of living with advancing disease, is as important as the measurable clinical outcomes themselves. Time will always be our enemy and additional finance and resources is not always the answer. If we can fully embrace the concept of holistic assessment and multi-professional working, then we can begin to focus on a person centred approach to care instead of the disease specific approach currently utilised.

This project provides the foundations for further quantitative and qualitative research in this area. The small sample size recruited is likely to be an underestimate of the actual number of patients who could potentially fulfil the inclusion criteria. This number, however, will not become evident until healthcare professionals who are currently working in heart failure develop the confidence, skills and knowledge to implement an ethos of care that encompasses the wider impact that heart failure has on the people living with the condition. Further research on prognostic indicators is also required.



Appendix 1 Framework

Appendix 1a

HFSNS Caseload Patient Classification Tool

All patients meeting the high risk group 3 criteria were identified by the HFSNS using the following:

l Regarded by the heart failure specialist nurse service (HFSNS) to be on optimal/target doses of evidence based heart failure therapy as per the local heart failure medical therapy guidelines and remained NYHA III/IV.

l Had progressive symptoms that - were distressing and/or debilitating.

l Required increased monitoring by the HFSNS e.g. home visits/clinic contact and/or a hospital admission.

l Required frequent medication changes in response to difficult/resistant symptoms and/or change in their condition.

GROuP 2

Symptomatic during optimisation process

Symptom palliation

Optimal/target doses of heart failure therapy

GROuP 1

Optimised

Asymptomatic

Discharged

GROuP 3

Optimised

Progressively symptomatic

Comprehensive assessment

Asymptomatic Symptomatic


Appendix 1b

Patient is on optimal/target dose of heart failure therapy

Comprehensive assessment, discussion and documentation

Clarity on treatment and future goals of care

Continue with a supportive palliative care approach

encompassing end of life care planning.

Continue with a supportive palliative care approach

encompassing additional investigations and treatment

to optimise cardiological management.

Yes

Yes

Yes

Yes

NYHA III/IVSymptomatic

Increased monitoring/hospital admission

Requiring regular medication adjustment in response todebilitating/distressing symptoms

Group 3 Patient



Appendix 1c

Comprehensive assessment discussion triggers

Stage 1

Patient Treatment Status Assessment Yes (4) No (4) Date

Patient Optimised

NYHA Class III/IV

Unstable for > 3 months

ECG: QRS Prolongation (> 120ms? > 150ms)

Hb

Further Investigation/Intervention Indicated

Prognosis Poor

Palliative Care and Comfort Measures Only

Stage 2

Advanced Planning Yes (4) No (4) Date

Patient Treatment Status Clarified/Documented

Effective CPR: Is it likely to be successful

DNAR Status Clarified/Documented

Device Insitu

Type of Device: ICD/CRT/CRT-D

Device Deactivation Planned

Device Deactivated

Reason for device not being deactivated

Stage 3

Priorities of Care Yes (4) No (4) Date

Preferred Place of Care

Symptom Management Considerations

Medication Review

Social Care Review

(Care/Benefits DS 1500 etc)

Carer Review

Patient and Carer Aware of DNAR Status

Gold Standards Framework Register

Fast Track Summary for (A&E) Dept/OOhrs

Liverpool Care Pathway (as appropriately indicated)

This comprehensive discussion trigger document can be used to support professionals to generate anticipatory care plans.



Appendix 1d

Anticipatory management plan template

Recent clinical summarySince October 2008, Mr Bloggs has had three separate admissions to hospital with symptoms of deteriorating heart failure. Sadly since these admissions his general condition is relatively poor and he continues to have refractory symptoms of dyspnoea and peripheral oedema affecting both legs to mid calf level. In response to this progressive deterioration, the following care priorities have been identified and agreed by all key clinicians involved in Mr Bloggs management.

Cardiological Assessment - it has been agreed that Mr Bloggs is on optimal cardiac therapy and there are no indications for further therapeutic interventions to improve outcomes.

Resuscitation Status - following discussion it has been agreed cardio-pulmonary resuscitation would not be effective and for this reason should not be initiated. Following careful and sensitive discussion Mr and Mrs Bloggs are fully aware of this decision.

Priorities of Care - Preferred place of care Mr Bloggs has expressed a wish that every effo rt should be made to manage and support his care at home however in the event that his condition becomes too difficult to manage at home he has stated that he would prefer a short hospital admission. Hospice directed care has been explored and declined on this occasion.

Symptom Considerations: In the event of Mr Bloggs developing symptoms of dyspnoea please consider the following treatment strategies

Accident Emergency Fast Track If Mr Bloggs requires admission to the hospital a fast track alert has been placed in accident emergency to avoid unnecessary waiting time and inappropriate investigations. This fast track process should ensure rapid assessment, appropriate treatment and transfer to a suitable area within the hospital. The aim of this should always be to ensure a short hospital stay.

Emergency Contact Telephone Numbers:District Nursing Team

Hospice

HFSNS

Out of Hours Emergency Care Service…

The above anticipatory management plan has been agreed with all key clinicians listed below:

Dr xxxxx (Consultant Cardiologist) Dr xxxxx (General Practitioner) Sr xxxxx (Heart Failure Specialist Nurse)

A copy of this anticipatory management plan has been given to all of the above including Mr Bloggs, Out Of Hours Emergency Care Services and the District Nursing Service.



Appendix 1e

Fast Track Summary Report For Out Of Hours - End of Life Heart Failure Should this patient present to (A & E) with end stage heart failure symptoms please assess and manage appropriately and ensure that home discharge is always considered in the first instance to avoid inappropriate hospital admission.

Decision Status: Palliative Care and Comfort Measures Only

Decision Rationale: End stage heart failure with poor prognosis

Date of Decision:

Professionals Responsible for Decision:

Professional Details Contact Details: GP or HFLN or Out of Hrs (name & contact number) Consultant Cardiologist Care of Elderly Consultant District Nursing Team Palliative Care Team

Primary Treatment Plan Contact HF CNS - If office hours available via mobile Patient not for invasive or investigative measures End of life discussion has taken place with patient and family Full social support is in place for this patient

If there are clinical signs of fluid retention administer: Consider IV frusemide Consider immediate release morphine 4 hourly Increase dose depending on response and side effects If unable to take drugs orally, use SC route or IV route as indicated Oxygen therapy if indicated

If there are no obvious signs of fluid retention but patient is dyspnoeic and anxious consider:

Opiate and diuretic as above Lorazepam 0.5 mg sublingually can help in acute situation Diazepam 2 mg orally and titrate depending on response



Appendix 2 Tables

Table 1

Sex H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Female 5 3 8 4 4 8 1 33 (26%)

Male 30 10 17 6 12 9 9 93 (74%)

Table 2

Age H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

50 - 59 3 0 0 0 3 0 1 7 (6%)

60 - 69 9 1 5 2 1 3 1 22 (17%)

70 - 79 18 4 13 6 9 6 5 61 (48%)

80 - 89 4 7 6 0 3 6 3 29 (23%)

90 and over 1 0 0 1 0 2 0 4 (3%)

Under 50 0 1 1 1 0 0 0 3 (2%)

Table 3

DepCat H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

High 24 3 5 5 5 5 3 50 (40%)

Low 0 1 3 1 7 4 5 21 (17%)

Medium 11 9 17 4 4 8 2 55 (43%)

Table 4

Ethnicity H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

White 34 13 25 9 16 15 10 122 (97%)

Asian 1 - - 1 - 2 - 4 (3%)

Table 5

Lives alone H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

No 30 8 19 6 11 13 6 93 (74%)

Yes 5 5 6 4 5 4 4 33 (26%)


Table 6

Main carer H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Child 2 4 4 4 1 5 0 20 (16%)

Friend 0 2 0 1 0 0 2 5 (4%)

Not recorded 10 0 5 0 3 2 0 20 (16%)

Other 0 0 2 1 1 2 3 9 (7%)

Sibling 0 0 0 1 1 0 0 2 (2%)

Spouse 23 6 14 3 10 8 5 69 (55%)

Stepfather 0 1 0 0 0 0 0 1 (<1%)

Table 7

Cause H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Cardiomyopathy 3 0 1 2 0 1 1 8 (6%)

Dilated cardiomyopathy

0 1 1 0 0 0 0 2 (2%)

Hypertensive 3 1 1 0 2 0 0 7 (6%)

Ischaemic 28 9 17 5 13 14 9 95 (75%)

Not recorded 0 0 0 0 0 1 0 1 (<1%)

Valvular 1 2 5 3 1 1 0 13 (10%)

Table 8

LVSD H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Mild 5 3 0 1 4 0 1 14 (11%)

Mild/moderate 1 2 1 0 1 0 0 5 (4%)

Moderate 10 2 6 1 3 8 4 34 (27%)

Moderate/severe

8 1 7 3 3 1 1 24 (19%)

Not recorded 0 0 0 0 0 1 0 1 (<1%)

Severe 11 5 11 5 5 7 4 48 (38%)

Table 9

NYHA H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

NYHA III 27 8 11 6 12 14 5 83 (66%)

NYHA III or IV 1 0 2 0 1 0 1 5 (4%)

NYHA IV 6 5 10 3 3 3 4 34 (27%)

Not recorded 1 0 2 1 0 0 0 4 (3%)

Appendix 2 Tables


Table 10

Co-morbidities H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Angina 14 5 16 3 4 8 7 57 (45%)

Asthma 1 0 3 2 1 0 2 9 (7%)

COPD 8 9 7 1 4 2 6 37 (29%)

Diabetes 11 4 11 3 5 4 3 41 (32%)

Renal 15 10 16 5 4 6 4 60 (47%)

Table 11

Symptoms H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Dyspnoea 17 10 10 5 15 8 8 73 (89%)

Oral problems 7 4 7 1 4 1 1 25 (30%)

Orthopnoea 14 10 8 3 11 8 8 62 (76%)

PND 12 7 7 3 3 5 7 44 (54%)

Cough 12 5 8 2 10 4 5 46 (56%)

Sleep problems 15 6 8 3 10 6 8 56 (68%)

Fatigue 15 11 10 5 11 8 9 69 (84%)

Weakness 15 11 6 5 9 8 8 62 (76%)

Oedema 12 8 8 5 7 7 8 55 (67%)

Ascites 1 2 6 3 4 2 - 18 (22%)

Anorexia 13 8 7 4 7 4 2 45 (55%)

Weight loss 9 4 6 3 8 3 1 34 (42%)

Weight gain 2 1 4 2 2 4 - 15 (18%)

Nausea 9 2 9 3 4 3 3 33 (40%)

Vomiting 2 - 5 1 2 - - 10 (12%)

Urinary problems 5 2 2 3 3 - 1 16 (19%)

Constipation 7 3 7 1 1 - 1 20 (24%)

Diarrhoea 1 1 2 - 1 1 - 6 (7%)

Skin 7 8 5 1 8 - - 29 (35%)

Pressure areas 2 1 5 1 1 2 1 13 (16%)

Pruritis 6 3 5 2 6 2 2 26 (32%)

Cardiac pain 6 5 6 - 4 1 2 24 (29%)

General pain 14 8 6 - 4 3 5 40 (49%)

Anxiety 11 5 8 3 7 2 3 39 (48%)

Depression 10 5 5 1 6 3 - 30 (37%)

Agitation 7 1 8 1 3 4 1 25 (30%)

Appendix 2 Tables


Table 12

All live patient admissions

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

0 11 1 0 0 4 5 0 21 (30%)

1 7 1 7 1 1 0 0 17 (25%)

2 5 0 3 2 1 0 1 12 (17%)

3 2 0 0 3 1 0 1 7 (10%)

4 0 0 2 0 1 0 0 3 (4%)

5 2 0 0 0 1 0 1 4 (6%)

6 0 0 0 0 1 0 0 1 (1%)

7 0 0 2 0 0 0 1 3 (4%)

8 0 0 1 0 0 0 0 1 (1%)

Total admissions 33 1 43 14 21 0 17 129

Median 2 1 2 2.5 3.5 0 3.5 2

Total days 492 19 354 284 422 0 217 1788

Range in days 1 – 192 0 – 19 1 – 97 8 – 147 2 – 255 0 36 – 81 0 - 255

Median 8 19 13 31 34 0 50 23

Table 13

All deceased patient admissions

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

1 4 1 0 0 0 2 1 8 (14%)

2 0 3 1 1 1 3 0 9 (16%)

3 1 2 2 2 2 4 2 15 (26%)

4 0 2 2 0 0 1 1 6 (10%)

5 2 0 1 0 0 1 0 4 (7%)

6 0 1 0 0 1 0 0 2 (4%)

7 0 2 1 0 0 1 1 5 (8%)

8 0 0 2 1 2 0 0 5 (8%)

9 0 0 0 0 0 0 1 1 (2%)

10 1 0 1 0 0 0 0 2 (4%)

Total admissions 27 41 54 16 30 36 27 231

Median 3 3 4.5 3 4.5 3 3.5 3

Total days 373 412 587 139 549 550 260 2870

Range in days 10 - 126 5 - 85 19 - 133 17 - 57 28 – 266

2 – 129 3 – 80 2 – 266

Median days 34 37 59 32 60 40 46 43

Appendix 2 Tables


Table 14a

OOH contacts (deceased pts)

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

No contact 1 5 3 2 2 5 1 19 (33%)

1 3 6 2 1 2 2 2 18 (32%)

2-5 4 - 3 1 1 5 2 16 (28%)

>5 - - 2 - 1 - 1 4 (7%)

Table 14b

OOH call time (deceased pts)

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Monday - Friday

Before 9am 1 - 2 - 1 - 2 6 (6%)

HFLNS hrs 1 - 2 - - 4 3 10 (11%)

After 5pm 3 4 6 2 4 3 5 27 (30%)

weekends 11 2 14 2 4 10 5 48 (53%)

Table 15a

No. of patients H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Home visit

Range 1 – 30

Median=7

Total: 885

17 11 10 10 15 13 9 85 (67%)

Nurse-led clinic

Range 1 – 30

Median=3

Total: 337

26 3 6 7 6 5 4 57 (45%)

Palliative clinic

Range 1 – 21

Median=5

Total: 211

20 - 1 5 1 5 6 38 (30%)

Phone call

Range 1 – 13

Median=4

Total: 152

5 2 1 5 11 8 - 32 (25%)

Other

Range 1 – 41

Median=5

Total: 278

26 1 - - - 7 1 35 (28%)

Appendix 2 Tables


Table 15b

Levels of contact

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Home visit 192 147 108 137 75 134 92 885

Nurse-led clinic

188 14 24 42 13 23 33 337

Palliative clinic

88 - 13 60 1 21 28 211

Phone call 35 6 4 32 35 40 - 152

Other 254 4 - - - 19 1 278

Table 16

Status H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Alive 27 2 15 6 10 5 4 69 (55%)

Dead 8 11 10 4 6 12 6 57 (45%)

Table 17

Preferred place of death

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Holiday home 0 0 0 0 1 0 0 1 (2%)

Home 4 7 5 1 2 6 5 30 (53%)

Home/hospice 1 0 0 1 0 0 0 2 (4%)

Hospice 0 4 3 0 0 0 0 7 (12%)

Hospital 0 0 0 0 1 1 0 2 (4%)

Nursing home 0 0 0 0 0 1 0 1 (2%)

Unknown 3 0 1 2 1 3 1 11 (19%)

Table 18

Actual place of death

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Holiday home 0 0 0 0 1 0 0 1 (2%)

Home 4 3 1 0 1 6 3 18 (32%)

Hospice 1 2 2 0 1 1 2 9 (16%)

Hospital 3 6 6 3 3 3 1 25 (44%)

Not recorded 0 0 1 1 0 1 0 3 (5%)

Nursing home 0 0 0 0 0 1 0 1 (2%)

Appendix 2 Tables


Table 19

All patient hospice admissions

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

0 34 12 22 9 15 16 9 117 (93%)

1 0 1 3 0 1 1 1 7 (6%)

3 1 0 0 0 0 0 0 1 (<1%)

8 0 0 0 1 0 0 0 1 (<1%)

Appendix 2 Tables


Appendix 3 Carer analysis

Analysis of carer understanding and challengesUnfortunately, there is a dearth of supporting documentation for issues specifically relating to carers on most sites. We recognise that this has been difficult information to capture due to pressures and time constraints placed on staff but is also due in some part to the number of patients attending nurse-led clinics who may not have their carer with them at these appointments.

Those reflections which do exist have been used to show the range of challenges and concerns which have anecdotally been known to staff within the HFLS for many years but which can now be affirmed from this analysis. We considered three main areas:

1. Carer understanding of prognosis and disease progression: a. Several levels were noted including “shock” and varied from “poor” to “fully aware”.

b. Most had recognised a deterioration in the patient’s recent condition and were becoming more fearful of this.

c. Some had a lack of acceptance as well as raised expectations and unrealistic hope.

d. Patients and carers do not always want the same things in terms of treatment.

2. Carer concerns:a. The main concern is around their own ability to cope and in having the knowledge and skills to make

things as comfortable as possible for the patients.

b. Episodes of hospital admission and poor symptom control can often make carers feel helpless which is distressing for them.

c. Often the carer’s own health can be problematic in that it limits their ability to do as much as they would like and they also worry that they may not be able to cope physically in the long term.

d. Some are unhappy about the patient knowing the full impact of their diagnosis and are concerned that it will affect their outlook and cause them to become despondent.

3. Challenging issues:a. Their ability to cope – fear of not coping, their own limitations both emotionally and physically, worry

about providing good quality care and support and ultimately, being unable to care for the patient at home were common themes throughout this section.

b. Influencing factors – carer worries for those who live alone, concerns about leaving the patient ranged from “popping to the local shop for a few minutes” to returning to work on a daily basis, complicated domestic issues within the family such as bereavement, break-ups, drug or alcohol dependency.

c. Patient empowerment – carers feel they need to be able to keep patients motivated and discourage them from becoming withdrawn and giving up, they want to help patients deal with the frustration of losing some independence and the limits which fatigue place on their usual daily activity, and they want to be able to encourage them to accept support from other agencies.


Overall, the general issues raised by carers as being the main areas of concern also proved to be those which are regarded as the main challenges. Whilst it is recognised that greater importance is placed on documentation of clinically relevant data, there also needs to be a good awareness of carer needs and expectations. Were the data more robust, we could proactively use this type of information to help equip carers with the necessary skills to develop their confidence in coping with the deterioration of their loved ones, and to ensure that they feel their contribution is both worthwhile and valuable.

Appendix 3 Carer analysis


Appendix 4 Patient analysis

We were able to ascertain patient’s level of understanding of their condition for 80% of the patients. For those numbers who are unknown it is difficult to determine their level of understanding as the data set field was left blank.

Patient understanding of condition

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Fully aware 6 - 3 4 2 4 7 26 (21%)

Aware 16 13 16 2 4 7 3 61 (48%)

Poor 6 - 3 2 - 3 - 14 (11%)

Unknown 7 - 3 2 10 3 - 25 (20%)

A wide range of concerns and challenges were recorded and these have been aggregated into the most commonly recorded categories within the data base. For instance, there is a strong link between independence, isolation and mobility and for this reason it was difficult to separate them. This is intended to give a flavour of the most challenging and concerning issues for the patients.

Patient concerns & needs

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Admissions 3 - 5 1 2 3 2 16 (13%)

Independence 2 8 5 3 0 1 0 19 (15%)

Isolation 3 - 3 - - 1 1 8 (6%)

Reduced function

- 6 5 - - - 1 12 (10%)

Concern for carer

3 1 2 2 1 - 1 10 (8%)

Symptom burden

5 3 6 2 - 1 1 18 (14%)

Mobility - 5 - 3 - 2 - 10 (8%)

Fear of dying 3 - - - - - - 3 (2%)

Challenging issues for patients

H1 n=35

H2 n=13

H3 n=25

H4 n=10

H5 n=16

H6 n=17

H7 n=10

Total n=126

Symptom control

5 5 2 3 - 4 2 21 (17%)

Acceptance 3 - 4 1 4 - 1 13 (10%)

Family issues 3 4 1 1 1 - - 10 (8%)

Independence 2 6 4 1 2 1 16 (13%)

Reduced function

3 1 1 2 7 (6%)


Appendix 5 Staff questionnaires

Appendix 5a

HFSNS questionnairesAll 17 specialist HFSNS staff were sent a short questionnaire which was returned anonymously to the Clinical Governance Support Unit for independent collation and analysis.Ten staff (59%) completed the questionnaire, which was a disappointing return considering that we were asking for their views on how they saw palliative care affecting their own role.

1. How would you define a palliative care approach in heart failure?As well as the expected issues such as symptom control and clinical management, it was encouraging to see that many responses took the holistic approach to be very important. Recognition was also made of the need for psychological, emotional and practical support as well as facilitating enhanced quality of life where possible

2. What, in your opinion, are the main barriers to the integration of a palliative care approach in heart failure?The main barriers identified by staff seemed to be around their own limitations in areas such as the necessary knowledge, skills and training to recognise when patients are reaching end of life and in dealing with the difficult conversations about resuscitation status and preferred place of death. Other problems identified included lack of hospice availability, communication channels and time constraints

3. It is anticipated that a palliative care approach be integral to any specialist nurse role, including heart failure. How do you feel about this?Generally, most staff thought that this was an important development although there were concerns noted over the need for specialised palliative care training and recognition of the time that needs to be devoted to these patients.

l One comment (r=006) suggested that there should be a dedicated HF palliative care nurse to whom these patients could be referred.

l One respondent (r=007) felt that it was not appropriate as “progression of the disease is unpredictable.”

4. Is palliative care an aspect of your heart failure nurse role that you wish to develop?Only one of the 10 responders felt that they did not wish to expand their skills in this area. Like r=006 in Q3, they also felt that there should be specialist HF/palliative nurses to deal with patients as they approach end of life.

l One respondent mentioned time management issues such as the lack of protected study time and busy caseload as being a potential barrier to their learning and development in this field.

In most part, the staff questionnaire provided robust evidence of what has been recognised anecdotally for some time. Most heart failure liaison service (HFLS) nurse specialists are aware that palliative care is becoming more of a requirement of their role and they are concerned about their own competencies in dealing with the issues presented by these patients. There is acceptance of the fact that they will need to undergo some training and awareness sessions to equip them to deal with their caseload and, with one exception, they are all keen to develop their skills in this area.


Appendix 5bPalliative care health needs assessment views of health and social care professionals

October 2008On behalf of the NHS Greater Glasgow and Clyde managed care network for palliative care, Kate Lennon (Nurse consultant in palliative care - NHSGGC) and Jackie Chaplin (Project manager: Palliative care for people with non-malignant conditions - NHSGGC) have been asked to conduct a palliative care health needs assessment. This health needs assessment involves seeking the views of patients, families and health and social care professionals. We would like to extend an invitation to heart failure liaison nurses in NHSGGC to participate in a focus group exploring the needs of palliative care patients and their families. The discussions at the focus group will be recorded.

The aim of the focus group is to elicit heart failure liaison nurses’ views regarding the extent to which current palliative care provision meets the needs of the local community within NHS Greater Glasgow and Clyde. As you are aware, recent reports have highlighted that palliative care is relevant to many people with long term conditions e.g. dementia, COPD, stroke, heart failure1-2. Therefore we are interested in your views regarding the palliative care needs of the whole population not only the needs of people with advanced cancer.

At the focus group we will be exploring the following key questions:

1. To what extent do you feel the palliative care needs of the population that you provide a service for are being met?

2. What issues influence the palliative care needs of the local population and how these are currently being met?

3. What are the main gaps in the services that patients and families are able to access?

4. What are the key priorities in taking palliative care forward within NHSGGC.

Jacquelyn Chaplin Project manager: Palliative care for people with non-malignant conditions NHS Greater Glasgow and Clyde

Kate Lennon: Nurse consultant in palliative care NHS Greater Glasgow and Clyde

1 Audit Scotland (2008) Review of palliative care services in Scotland. Edinburgh. Audit Scotland

2 Scottish Government (2008) Living and dying well: A national action plan for palliative and end of life care in Scotland. Edinburgh. Scottish Government



Palliative care health needs assessment focus group

Heart failure nurseHeld on Wednesday 3rd December 2008Kate Lennon– Facilitator Jackie Chaplin – Notes

Below is a summary of the key points from the discussion that took place.

5. To what extent do you feel the palliative care needs of the population that you provide a service for are being met?

l Very variable across Glasgow & Clyde. In East of Glasgow good connections with Huntershill.

l Links with palliative care good. MDT team meeting with palliative care/heart failure works well in RAH but there are challenges in ensuring patients get their preferred place of death.

l Good supportive care provided by heart failure team throughout journey – difficulty – is identifying when transition from supportive health failure to palliative and end of life care occurs – this causes challenges.

l Clarification of British Heart Foundation/Marie Curie Cancer Care - project plans – need for involvement.

l Issues about meeting palliative care needs from secondary care perspective. Difficulties in recognising when appropriate to change focus from interventionists approach to palliative care – need for education and changes in attitudes in non palliative care professionals.

l Issues about what happens to patient when admitted to secondary care – many patients have many investigations, go through A&E etc, rather than focus being on comfort.

l Pilot in progress about identify patients and developing anticipation management plan and fast tracking through A&E.

6. What issues influence the palliative care needs of the local population and how these are currently being met?

l Takes some time to develop knowledge of the resources that are available locally e.g. Befriending, out of hours etc.

l Depends on workload of Palliative Care CNS – availability to see heart failure patients depends on capacity.

l Palliative care is integral to heart failure nurses role – accessing palliative care CNS advice is higher now but as heart failure nurses develop competence and confidence in managing palliative care needs of patients and raising discussions with cardiologists.

l Huge anxiety amongst cardiologists that patients may be missing out on evidence based cardiology therapy so important to ensure patient on optimum therapy before considering palliative care – systematic review very important – be beneficial combining both approaches.

l In Inverclyde – hospice got money from help the Hospice – one year funding used for heart failure patients – enhance links between palliative care and heart failure.

l Developments dependant on interest of professionals.

l Staff turnover influences sustainability.



7. What are the main gaps in the services that patients and families are able to access?

l Out of hours support for clinicians as well as family and patient and carers – befrienders, overnight carers may prevent unwanted admissions to hospital.

l Knowledge and expertise of out of hours professionals.

l Quicker referral to specialist palliative care services.

l Accessing benefits – lack of knowledge of what/how.

l Awareness of services – limited amongst professionals and patients.

l Need for a drop in resource – information, benefits and complementary therapies.

l Uptake of services can be varied – stigma of hospices and lack of understanding of palliative care - patients may be reluctant to access hospice services – drop in centres can assist this.

l Underutilise IT services to help communication – out of hours.

l DNAR documentation.

Looking ahead

l ICD’s and CRT’s – people may live longer with chronic disease.

l Question of the impact that current treatments may have on survival.

l Scottish National Standards and UK wide health improvement standards of heart failure – will put a burden on service.

l Whole population we don’t see – those who don’t have left ventricular dysfunction – still have huge palliative care needs.

l As skills and expertise of heart failure liaison nurses increase – may increase referrals.

l Patient education pilot – aim of improving optimisation of treatment – may not have impact on palliative care needs.

l Inequity of provision in some areas.

l Cardiologists/key clinicians needed to identify reversible causes.

l Communication between cardiologists and advanced heart failure – could be improved.

8. What are the key priorities in taking palliative care forward within NHSGGC?

l Drive to make everything equitable

l Cardiologists ‘buy in’ city wide

l Wider education

l Generally there has been group recognition of the palliative care needs of heart failure patients

l Need to develop fast track system/management plan currently being piloted needs to be evaluated and expanded if early successes are maintained. Works better where there are designated cardiology beds

l Management plan – can be used to keep patients at home.



Immediate

l Communication/out of hours – what patients want – management plan?

Long term

l City-wide buy in.

l Expansion of management plan/fast track patients across NHS GGC.



Appendix 5c

Professional time log

First patient & carer consultation (review by nurse and cardiologist)

Patient Clinic time Home visit Ward visitPC/Professionals referral forms

Patient calls Total time

1 60mins 45mins 105mins




5 60mins 60mins




9 60mins 20mins 10mins 90mins

10 45mins 45mins

Total 885mins

Total time spent with each patient/carer was 885mins divided by 10 patients = 88.5mins.

Time spent on referring patients to other professionals such as the OT, SW and Benefits Services was 225mins. If these routine referrals were encompassed within the HFSN role the time equivalent could be deducted from the total time spent with each patient/carer on their first consultation.

The time that could be spent for each initial patient/carer consultation is therefore 885-225=660mins divided by 10 patients = 66.0mins per patient.

Subsequent patient and carer consultation

Patient Clinic time Home visit Ward visitPC/Professionals referral forms

Patient calls Total time

1 3x10mins 30mins

2 45mins 45mins

3 45mins 45mins


5 60mins 60mins

6 40mins 40mins

7 60mins 60mins

8 1x10mins 10mins


10 45mins 45mins

Total 485mins

Time spent with patient on subsequent review was 485mins divided by 10 = 48.5mins.



Please note that in general the consultations have been prolonged due to the evaluation requirements of the pilot project in completing questionnaires that may or may not be required during regular patient and carer consultation. It is also anticipated that consultation times will shorten as professionals familiarise themselves with this care approach.

As referral and hands-on support from other services such as palliative care & district nurses increases, the HFSN involvement will be as a co-ordinator or link person and it is anticipated that this in the long term will require less HFSN time.



Appendix 6 Joint working

Palliative care joint working – Recurring themesThe following themes emerged from a reflective narrative that was developed by the palliative care clinical nurse specialist during joint working with the HFSNs. These themes align with the training and knowledge gaps previously identified by the NHS GG&C HFSNS staff questionnaire and is supported further by the wider BHF heart failure nursing community.

The main themes identified were as follows:

CommunicationDifficult conversations concerning deteriorating condition, preferred place of care and resuscitation were highlighted from the staff questionnaire as a key area for development. The palliative care clinical nurse specialist reflective narrative concurred with this by observing the discomfort and lack of confidence that some of the HFSN’s experienced during patient and carer consultations.

Enhancing existing communication skills has been identified as a key area for development.

Holistic approachThe joint working has highlighted that the HFSNs are naturally focused on the clinical aspects of their patients care and for this reason there can be a difference in approach between the two specialities. The experience of the palliative care clinical nurse specialist during 1:1 patient interaction found that the approach naturally used for the cancer patients was found to be overwhelming at times for some of the patients and their caregivers living with heart failure. Once the relationship had been established over a period of time this type of interaction appeared to be largely positively.

The holistic approach to patient assessment has been identified as a key area for development.

Time and competing prioritiesIt was observed that there are different priorities between the HF and PC speciality groups. The clinical approach to care, time constraints and the nurse led clinic model can discourage some HFSNs from adopting a holistic approach to care.

It is acknowledged however that the intensive monitoring provided by the HFSNS is a major factor in preventing hospitalisation. Non-medical prescribing has also been regarded within the HFSN role as being significantly beneficial to both patients and the service. As a consequence of all of this the additional training to support the integration of a holistic approach by the HFSNS is not yet seen as a priority at this time.

Multi-professional workingMulti-professional working within the HFSNS is a key area for further development. Although some HFSN’s are utilising other professionals to optimise their patients care others are not routinely referring patients to the OT, DN or Social Care Services. The potential to optimise the patient and carers wellbeing is significant if we can encourage greater collaborative working with the HFSNS and other service providers. This is particularly important if we are to anticipate the changing needs and social circumstances of patients and their care givers.


Appendix 7 Advanced communication bid

Communication and Human Relationships LTC and Palliative Care

Project Bids 2009-10

NHS Board Greater Glasgow and Clyde

Key Contact PersonName

Address

Telephone

Email Address

Sr Yvonne Millerick & Sr Jackie Wright

(Heart Failure/Palliative Care Specialist Nurses) Room 9, Cutherbertson Building Glasgow Royal Infirmary Glasgow G4 OSF

[email protected] [email protected]

Project Title Improving Advanced Communication Skills for Professionals working within the cardiology/medical speciality across GG&C.

Theme(Please Indicate)

Empathy and Engagement

Difficult or challenging conversations and situations

End of life conversations

Project Purpose To develop and enhance advanced communication skills of cardiology/medical health care professionals working across GG&C. Provide dignity and respect communication training for front line professionals for (e.g. clerical staff) who are often the first communication link for patients and families either on arrival at different care settings or by telephone.

Group Of Staff To undertake Learning

This learning opportunity would be offered to approximately 40 professionals working in CCU, Medical, Cardiac Rehab and Heart Failure Specialities across GG&C. Representation from nursing, medical and clerical roles would be included in this number.

Project ResourcesFor example;

Education Costs e.g. education day, modules, workshops, work based costs

Practice Support (Specify)

Travel

Staff Costs

Other Costs

2009/10

Item Cost

Advanced Communication Skills (2days)

Dignity & Respect

(1 day)

Not Applicable

Local Delivery in partnership with recognised Higher Educational Institution

N/A

N/A

£280 x 30=£8400

£140 x 10=£1400


Total Cost £9,800

Name(s) of Internal Team Support/Supervision

Mr John Carson - Lead Nurse for Heart Failure Specialist Nurse Service.

Ms Jackie Chaplin - Lead Nurse for Non Malignant Diseases

Dr Paul Keeley - Consultant In Palliative Medicine

Sr Yvonne Millerick – Heart Failure Palliative Care Specialist Nurse

Sr Jackie Wright – Palliative Care Specialist Nurse

External Resources Employing the Advanced Communication Skills 2 day course and Dignity and Respect 1 day course already offered at Glasgow University. The School of Nursing & Health Care at Glasgow University has advised that delivery of both named modules can be facilitated to accommodate the intended student numbers in keeping with the March 2010 time frame.

Quality Measures The 2 day “Advanced Communication Skills” course delivered by Glasgow University has been independently evaluated by Cardiff University research team and has been well established for 4 years. It is also recognised for its Multi-Disciplinary Professional inclusive approach to delivery and training.

Evaluation: A variety of pre and post evaluation is included in the overall cost of the study days and includes reflective appraisal during the delivery using a variety of technological resources. On completion, all participants will receive a phone call from the university around week 8 and will be asked specific questions relating to their experience and changes in clinical practice since their attendance. A full evaluation report will then be formulated by the university and sent to key individuals for review and comment.

PFPI Liaison with a number of patient representatives has and continues to take place on the MCN steering group and more recently patient and carer focus groups involved in the heart failure palliative care project.



Project details

What are the drivers for this project?Please specify which Local Delivery Plan target this relates to.

The policy drivers include: MCN Action Plan Long Term Conditions, Living and Dying Well Action Plan (2008), Scottish Partnership for Palliative Care (2008).

Without training in advanced communication skills the following key recommendations cannot be integrated into clinical practice:

• Healthcareteamsshouldadoptaholisticapproachtocare ensuring optimum management of physical, social, psychological, emotional and spiritual needs

• Collaborativeworkingbetweendifferenthealthcareteamsshouldbe implemented

• Sufficientopportunitiesshouldbegiventopatientsandcarerstodiscuss any issues important to them at their own pace and the time of their choosing.

• Arrangementsforappropriateendoflifecareshouldbediscussed and implemented.

Everyday clinical drivers for this project are:

• Professionaltruthtellinginlifelimitingdiseaseisofteninadequate,resulting in inappropriate care that does not always reflect either the patient or families care priorities as the clinical condition deteriorates (Selman et al 2006).

• Specificknowledgegapsincludefailuretorecognisethedyingpatient, advanced communication skills and advanced care planning.

• Patientsandfamiliesnotaware/preparedforclinicaldeterioration

• Patient/familydistress–poorsymptomcontrol,unmetneedphysical, emotional, psychological, financial perspective

Ineffective communication can often lead to inappropriate care priorities that often result in prolonged hospital admission and failure to meet preferred place of death.

What are you trying to accomplish with this project i.e. what are the aims?

The overall aim is to improve the communication skills of key professionals who are engaging and caring for patients and their families living and dying from cardiac disease on a daily basis.

Projected outcomes:

• Toutiliseenhancedcommunicationskillstosupporttheholisticassessment of patients and incorporate a supportive/palliative care approach to care into every day clinical practice

• Totrainstafftoanadvancedlevelthatpermitsthemtouseopencommunication effectively, sensitively and timeously.

• Tofacilitateoptimalmanagementthatreflectsboththepatientand families wishes by engaging and eliciting appropriate information using advanced communication skills techniques

• Topositivelyinfluencetheircareratherthandiminishthepatientsand families hope



What do you want to change? • Theexistingcultureofpoorprofessionalcommunicationresultingin unmet patient care needs

• Theavoidanceofopencommunication,breakingbadnews,endof life care, collusion and denial

• Thefocusofclinicaldirectedcaretoanholisticapproach

• Toappropriatelyaccessotherteams’e.g.palliativecaretoreviewpatients with complex needs only and not for all patients who are regarded as dying.

• Therecanbeafearandanxietywithpatientsandrelativesifpalliative care teams are involved in their care

What are the education and training requirements?

• Dignity&RespectCommunication

• AdvancedCommunicationCourses

• Supervisedpracticeandsupport

• Reflectivepractice

How/where will the education be accessed?

Glasgow University, study days are already available and well established.

How will you ensure this education in communication/human relationships becomes integrated into practice?

Advanced communication skills knowledge is an essential requisite for professionals managing long term progressive conditions and in particular cardiac disease. By facilitating opportunities to enhance advanced communication skills it is hoped that professional confidence and awareness will increase and good communication will become embedded into every day clinical practice.

In keeping with Jackie Chaplin’s vision for the wider Non-Malignant Communication Training Strategy across GG&C professionals from a variety of different specialities and care settings will be given the opportunity to be trained as trainers for both basic and advanced communication. The advanced communication training days proposed in this bid is an essential pre-requisite for this training opportunity. This would ensure that ongoing training would become embedded in each of the specialities and would enhance clinical and professional practice by:

• Supportingstafftohaveincreasedconfidencetoengageandempathise with patients and families living with cardiac disease.

• Increasecollaborativeworkingbyrecognisingrolelimitationandeffectiveness of working with palliative and other health and social care professionals.

• Improveddocumentationassociatedwithchallengingandendoflife conversations.

• PromoteearlierIdentificationofpatientsandfamiliesprioritiesof care particularly those who are at risk of dying in the next 12 months.

What will you measure?How will you know that change leads to improvement?

• Cardiologyteamsperceivedconfidenceintheirownabilitiesandconfidence

• Formalevaluationse.g.focusgroups,questionnaires

• Documentedevidenceparticularlythroughmanagementplansand end of life care

• GlasgowUniversityhaveincludedapre&postevaluationintheoverall cost of the study days.



Key project milestones

Key milestone/output Target date

15 professionals will have attended Advanced Communication Skills (2 days) December 2009

15 professionals will have attended Advanced Communication Skills (2 days) March 2010

10 professionals will have attended Dignity and Respect (1 day ) March 2010

Any additional informationl Make it part of the learning contract for doctors.

l Offer training to consultants as part of their annual appraisal.

l Offer opportunities to work with other teams e.g. palliative care patients to develop their communication skills with patients with non-malignant disease.

l Ensure that communication is an integral part of training and development of all staff working with heart failure patients.



Appendix 8 Database specification

Banner header Structure Comment

CHI Numeric Community Health Index Number

CRN Numeric Hospital Number

Forename Free Text

Surname Free Text

Date of birth Date/Time DD/MM/YYYY

Palliative care agreed

Yes/No

LVD36 Score Numeric

Demographics Structure Comment

Address1 Free Text

Address2 Free Text

Address3 Free Text

City Free Text

Postcode Free Text

DepCat Numeric Deprivation Score based on Morris & Carstairs 2001

Telephone No Numeric

Religion Drop Down • Buddhist

• Christian–ChurchofScotland

• Christian–RomanCatholic

• Hindu

• Jewish

• Muslim

• Shinto

• Sikh

• Other

• NoReligiousAffiliation

• NotRecorded

Ethnicity Drop Down • White

• BlackCaribbean

• BlackAfrican

• Indian

• Pakistani

• Bangladeshi

• Chinese

• Other

• NotRecorded

Occupation Free Text

Lives Alone Yes/No


Main Carer Drop Down • Spouse

• Child

• Sibling

• Friend

• Other

• NotRecorded

Next of Kin Free Text Name of Next of Kin

Relationship Drop Down • Spouse

• Son

• Daughter

• Brother

• Sister

• Grandchild

• Friend

• Other

• NotRecorded

NoK Address Free Text

NoK Postcode Free Text

NoK Telephone Numeric

Residence Drop Down • Flat

• House

• Bungalow

• Sheltered/CareHome

• NotRecorded

Stairs Yes/No

Stair Type Drop Down • Internal

• External

• BothInternalandExternal

• NotRecorded

Disabled Access Yes/No

Mobility Issues Yes/No

Housing Comments

Free Text

Clinical Summary Structure Comment

Group 3 Yes/No Is the patient in Group 3 Category

Comprehensive Assessment

Yes/No Was a Comprehensive Assessment Completed

Priorities of Care Yes/No Priorities of Care Documented

Resuscitation Yes/No Resuscitation Status Documented

GSF Yes/No Is the GP practice GSF Registered



Cause of HF Drop Down • Cardiomyopathy

• Hypertensive

• Ischaemic

• Valvular

• Idiopathic

• NotRecorded

Degree of LV Impairment

Drop Down • Mild

• MildModerate

• Moderate

• ModerateSevere

• Severe

• NotRecorded

Ejection Fraction Text

NYHA Class Drop Down • III

• IV

• NotRecorded

Angina Yes/No

Asthma Yes/No

COPD Yes/No

Diabetes Yes/No

Poor Renal Function

Yes/No

Device Yes/No

Device Type Drop Down • CRT

• CRT-D

• ICD

• NotRecorded

1st BP Numeric

Last BP Numeric

1st HR Numeric

Last HR Numeric

1st WT Numeric

Last WT Numeric

1st Na Numeric

Last Na Numeric

1st K Numeric

Last K Numeric

1st Ur Numeric

Last Ur Numeric

1st Creat Numeric

Last Creat Numeric

1st GFR Numeric



Last GFR Numeric

1st Hb Numeric

Last Hb Numeric

Device Discussion Structure Comment

Action Record Free Text

Action Record2 Free Text

Deactivation Discussed

Yes/No

Decision Free Text

Date Deactivated Date/Time DD/MM/YYYY

Pacemaker Yes/No

Indication Free Text Indication for Pacemaker

Transplant Considered

Yes/No

If NO, reason Free Text

Date of Transplant Date/Time DD/MM/YYYY

AMP Yes/No Was Anticipatory Care Management Plan designed

AMP Comments Free Text

Medication Structure Comment

Ace-I Drop Down • Captopril

• Enalapril

• Lisinopril

• Perindopril

• Ramipril

Ace-I Dose Numeric Dose in mgs

Ace-I Frequency Free Text

Ace-I Optimised Yes/No

ARB Drop Down • Candesartan

• Irbesartan

• Losartan

• Valsartan

ARB Dose Numeric Dose in mgs

ARB Frequency Free Text

ARB Optimised Yes/No

Betablocker Drop Down • Atenolol

• Bisoprolol

• Carvedilol

• Metoprolol

Betablocker Dose Numeric Dose in mgs

Betablocker Frequency

Free Text



Betablocker Optimised

Yes/No

Aldosterone Drop Down • Eplerenone

• Spironolactone

Aldosterone Dose Numeric Dose in mgs

Aldosterone Frequency

Free Text

Aldosterone Optimised

Yes/No

Loop Diuretic Drop Down • Bumetanide

• Frusemide

• Furosemide

Loop Dose Numeric Dose in mgs

Loop Frequency Free Text

Loop Optimised Yes/No

Thiazide Drop Down • Bendrofluazide

• Bendroflumethiazide

• Metolazone

Thiazide Dose Numeric Dose in mgs

Thiazide Frequency

Free Text

Thiazide Optimised

Yes/No

Hydralazine Free Text

Hydralazine Dose Numeric Dose in mgs

Hydralazine Frequency

Free Text

Hydralazine Optimised

Yes/No

Nitrate Free Text

Nitrate Dose Numeric Dose in mgs

Nitrate Frequency Free Text

Nitrate Optimised Yes/No

Current Medication

Free Text All other medications to be listed

Poor Compliance Yes/No

Compliance Aids Yes/No

Nebuliser Therapy Yes/No

Oxygen Therapy Yes/No

Flu Vaccine Yes/No

Pneumococcal Vaccine

Yes/No



Patient Understanding

Structure Comment

Summary of Present Illness

Free Text

Patient Understanding

Free Text Patient Understanding of Prognosis/Progression

Patient Concerns Free Text Patient Concerns and Needs

Challenging Issues Free Text

PU HF Free Text Patient Understanding of Heart Failure

PU Hospice Free Text Patient Understanding of Hospice Care

PU Palliative Care Free Text Patient Understanding of Palliative Care

PU Supportive Care

Free Text Patient Understanding of Supportive Care

Carer Understanding

Structure Comment

Carer Understanding

Free Text Carer Understanding of Prognosis/Progression

Carer Concerns Free Text

Other Concerns Free Text Concerns of Other Family and Friends

Challenging Issues for Carer

Free Text

Carer Strain Numeric Carer Strain Index Score

Has Clinic been useful

Yes/No

Clinic Comments Free Text

Quality of Life Structure Comment

Self Care Drop Down • Independent

• Assisted

• Dependent

• NotRecorded

Domestic Skills Drop Down • Independent

• Assisted

• Dependent

• NotRecorded

Washing & Dressing

Drop Down • Independent

• Assisted

• Dependent

• NotRecorded

Bathing or Showering

Drop Down • Independent

• Assisted

• Dependent

• NotRecorded



Mobility Drop Down • Independent

• Assisted

• Dependent

• NotRecorded

Supporting Aids Free Text What aids were required

AA Requested Yes/No Attendance Allowance Requested

AA Received Yes/No

AA Commenced Date/Time DD/MM/YYYY

AA Comments Free Text

DS1500 Requested

Yes/No DS1500 Allowance Requested

DS1500 Received Yes/No

DS1500 Commenced

Date/Time DD/MM/YYYY

DS1500 Comments

Free Text

Benefits Free Text Other Financial Benefits

Equipment1 Free Text








Additional Resource Requested

Free Text

Hospital Admissions

Structure Comment

Admissions Numeric Number of Hospital Admissions

Acute Reasons Free Text

Hospice Admissions

Numeric Number of Hospice Admissions

Hospice Reasons Free Text

HF Nurse HV Numeric Number of Home Visits from Heart Failure Nurse

PC Nurse HV Numeric Number of Home Visits from Palliative Care Nurse

OOH Contacts Numeric Number of Contacts with GP Out of Hours Service

GP Contacts Numeric Number of GP Contacts

Other Contacts Numeric Number of Contacts with other Health Care Professionals

Bereavement Structure Comment

Date of Death Date/Time DD/MM/YYYY



Place of Death Drop Down • Home

• Home/Hospice

• Hospital

• Hospice

• NursingHome

• Other

• NotRecorded

Preferred Place of Death

Drop Down • Home

• Home/Hospice

• Hospital

• Hospice

• NursingHome

• Other

• NotRecorded

Significant Events Yes/No Were there any significant events prior to death

Additional Services

Free Text Additional services required prior to death

Bereavement Visit Date/Time Date of Bereavement Visit

Bereavement Comments

Free Text

Reflective Log Structure Comment

Reflective Diary Free Text Space for HFSNS staff to record their own reflections of the care plan

Challenging Issues for Professionals

Free Text Space for HFSNS staff to record what they saw as their own challenges in dealing with each individual

Carer Strain Index Structure Comment

Overall Care Drop Down • Noburdenatall

• Slightburden

• Moderateburden

• Quiteaburden

• Greatburden

• NotRecorded

Physically Drop Down • Noburdenatall

• Slightburden

• Moderateburden

• Quiteaburden

• Greatburden

• NotRecorded



Financially Drop Down • Noburdenatall

• Slightburden

• Moderateburden

• Quiteaburden

• Greatburden

• NotRecorded

Emotionally Drop Down • Noburdenatall

• Slightburden

• Moderateburden

• Quiteaburden

• Greatburden

• NotRecorded

Socially Drop Down • Noburdenatall

• Slightburden

• Moderateburden

• Quiteaburden

• Greatburden

• NotRecorded

Total Score Numeric

Symptom Assessment

Structure Comment

Oral Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Oral Date Date/Time DD/MM/YY

Dyspnoea Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Dyspnoea Date Date/Time DD/MM/YYYY

Orthopnoea Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded



Orthopnoea Date Date/Time DD/MM/YYYY

PND Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

PND Date Date/Time DD/MM/YYYY

Cough Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Cough Date Date/Time DD/MM/YYYY

Sleep Problems Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Sleep Date Date/Time DD/MM/YYYY

Fatigue Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Fatigue Date Date/Time DD/MM/YYYY

Weakness Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Weakness Date Date/Time DD/MM/YYYY



Oedema Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Oedema Date Date/Time DD/MM/YYYY

Ascites Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Ascites Date Date/Time DD/MM/YYYY

Anorexia Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Anorexia Date Date/Time DD/MM/YYYY

Weight Loss Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

WTL Date Date/Time DD/MM/YYYY

Weight Gain Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

WTG Date Date/Time DD/MM/YYYY



Nausea Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Nausea Date Date/Time DD/MM/YYYY

Vomiting Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Vomiting Date Date/Time DD/MM/YYYY

Urinary Problems Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Urinary Date Date/Time DD/MM/YYYY

Constipation Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Constipation Date Date/Time DD/MM/YYYY

Diarrhoea Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Diarrhoea Date Date/Time DD/MM/YYYY



Skin Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Skin Date Date/Time DD/MM/YYYY

Pressure Areas Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Pressure Date Date/Time DD/MM/YYYY

Pruritis Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Pruritis Date Date/Time DD/MM/YYYY

Cardiac Pain Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

CP Date Date/Time DD/MM/YYYY

Generalised Pain Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Generalised Pain Date

Date/Time DD/MM/YYYY



Anxiety Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Anxiety Date Date/Time DD/MM/YYYY

Depression Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Depression Date Date/Time DD/MM/YYYY

Agitation Drop Down • Absent

• Static

• Mild

• Moderate

• Severe

• Overwhelming

• NotRecorded

Agitation Date Date/Time DD/MM/YYYY

Other Free Text Any other symptoms experienced

Other Date Date/Time DD/MM/YYYY

Comments Free Text

Professional services

Structure Comment

DN Requested Yes/No DN=District Nurse

DN Placed Yes/No DN=District Nurse

DN Declined Yes/No DN=District Nurse

DN Referral Yes/No DN=District Nurse

DN Comments Free Text DN=District Nurse

SN Requested Yes/No SN=Specialist Nurse

SN Placed Yes/No SN=Specialist Nurse

SN Declined Yes/No SN=Specialist Nurse

SN Referral Yes/No SN=Specialist Nurse

SN Comments Free Text SN=Specialist Nurse

DT Requested Yes/No DT=Dietician

DT Placed Yes/No DT=Dietician

DT Declined Yes/No DT=Dietician



DT Referral Yes/No DT=Dietician

DT Comments Free Text DT=Dietician

PT Requested Yes/No PT=Physiotherapy

PT Placed Yes/No PT=Physiotherapy

PT Declined Yes/No PT=Physiotherapy

PT Referral Yes/No PT=Physiotherapy

PT Comments Free Text PT=Physiotherapy

ST Requested Yes/No ST=Speech Therapist

ST Placed Yes/No ST=Speech Therapist

ST Declined Yes/No ST=Speech Therapist

ST Referral Yes/No ST=Speech Therapist

ST Comments Free Text ST=Speech Therapist

PS Requested Yes/No PS=Psychologist

PS Placed Yes/No PS=Psychologist

PS Declined Yes/No PS=Psychologist

PS Referral Yes/No PS=Psychologist

PS Comments Free Text PS=Psychologist

Hospice Requested

Yes/No

Hospice Placed Yes/No

Hospice Declined Yes/No

Hospice Referral Yes/No

Hospice Comments

Free Text

SW Requested Yes/No SW=Social Work

SW Placed Yes/No SW=Social Work

SW Declined Yes/No SW=Social Work

SW Referral Yes/No SW=Social Work

SW Comments Free Text SW=Social Work

HH Requested Yes/No HH=Home Help Service

HH Placed Yes/No HH=Home Help Service

HH Declined Yes/No HH=Home Help Service

HH Referral Yes/No HH=Home Help Service

HH Comments Free Text HH=Home Help Service

SR Requested Yes/No SR=Sitter Service

SR Placed Yes/No SR=Sitter Service

SR Declined Yes/No SR=Sitter Service

SR Referral Yes/No SR=Sitter Service

SR Comments Free Text SR=Sitter Service

DNT Requested Yes/No DNT=Dentist

DNT Placed Yes/No DNT=Dentist



DNT Declined Yes/No DNT=Dentist

DNT Referral Yes/No DNT=Dentist

DNT Comments Free Text DNT=Dentist

VS Requested Yes/No VS=Voluntary Services

VS Placed Yes/No VS=Voluntary Services

VS Declined Yes/No VS=Voluntary Services

VS Referral Yes/No VS=Voluntary Services

VS Comments Free Text VS=Voluntary Services

OT Requested Yes/No OT=Occupational Therapy

OT Placed Yes/No OT=Occupational Therapy

OT Declined Yes/No OT=Occupational Therapy

OT Referral Yes/No OT=Occupational Therapy

OT Comments Free Text OT=Occupational Therapy

CT Requested Yes/No CT=Complimentary Therapy

CT Placed Yes/No CT=Complimentary Therapy

CT Declined Yes/No CT=Complimentary Therapy

CT Referral Yes/No CT=Complimentary Therapy

CT Comments Free Text CT=Complimentary Therapy

OPT Requested Yes/No OPT=Older Persons Team

OPT Placed Yes/No OPT=Older Persons Team

OPT Declined Yes/No OPT=Older Persons Team

OPT Referral Yes/No OPT=Older Persons Team

OPT Comments Free Text OPT=Older Persons Team

PSG Requested Yes/No PSG=Patient Support Group

PSG Placed Yes/No PSG=Patient Support Group

PSG Declined Yes/No PSG=Patient Support Group

PSG Referral Yes/No PSG=Patient Support Group

PSG Comments Free Text PSG=Patient Support Group

CSG Requested Yes/No CSG=Carer Support Group

CSG Placed Yes/No CSG=Carer Support Group

CSG Declined Yes/No CSG=Carer Support Group

CSG Referral Yes/No CSG=Carer Support Group

CSG Comments Free Text CSG=Carer Support Group

RR Requested Yes/No RR=Religious Representative

RR Placed Yes/No RR=Religious Representative

RR Declined Yes/No RR=Religious Representative

RR Referral Yes/No RR=Religious Representative

RR Comments Free Text RR=Religious Representative

Other Free Text



Appendix 9 References

1 Beattie, J., Goodlin, S. (2008) Supportive care in heart failure, Oxford University Press, Oxford.

2 Scottish Intercollegiate Guidelines Network (2007). Management of Chronic Heart Failure: A National Clinical Guideline. (SIGN clinical guideline 95). SIGN Edinburgh.

3 British Heart Foundation (2007) Coronary Heart Disease Statistics, BHF, London.

4 Levy W C, Mozaffarian, MD, Linker DT, Santosh C. Sutradhar, Anker SD, Cropp AB, Maggioni MD, Burton P, Sullivan MD, Pitt B, Poole-Wilson PA, Mann D, Packer M. The Seattle Heart Failure Model: Prediction of Survival in Heart Failure. Circulation. 2006;113:1424-1433.

5 Thompson,D.R.(2007). Improving end-of-life care for patients with chronic heart failure, Editorial.http://www.heart.bmj.com

6 Thornhill K, Lyons A, Nouwen A, Lip G. Experiences of living with congestive heart failure: a quantitative study. Br J Health Psychol 2008;13(1):155-75.

7 Blue L, Lang E, McMurray JJ et al (2001) Randomised controlled trial of specialist nurse intervention in heart failure. BMJ 323: 715-18.

8 NHS Greater Glasgow & Clyde Guidelines for the Investigation and Management of Left Ventricular Systolic Dysfunction (LVSD), 2008.

9 National Council for Palliative Care (2005) National Survey of Patient Activity Data for Specialist Palliative Care Services: Full report for the year 2003-4. NCPC, London.

10 Scottish Partnership for Palliative Care. Living and dying with advanced heart failure: a palliative care approach: 2008: www.palliativecarescotland.org.uk

11 Scottish Government. Living and dying well: a national action plan for palliative and end of life care in Scotland. Edinburgh: Scottish Government; 2008. Available from: http://www.scotland.gov.uk/Publications/2008/10/01091608/0

12 End of Life Care Programme, London Department of Health; 2007. Available from:http://www.endoflifecare.nhs.uk/eolc/

13 Scottish Executive (2008) Audit Scotland: a review of palliative care services in Scotland, HMSO:Edinburgh

14 Murray SA, Kendall M, Boyd K, et al. Illness trajectories and palliative care. BMJ 2005;330:1007-11.

15 Ward C, Improving the care of patients with advanced heart failure. J R Coll Physicians Edinburgh 2009;39:209-215

16 Pooler, J., Yates, A. Ellison, S. (2007) “Caring for patients dying at home from heart failure: a new way of working,” International Journal of Palliative Nursing, Vol 13, no6, p266-271

17 Formiga F, Chivite D, Ortega C, Casas S, Ramon JM, AND Pujol r, End of life preferences in elderly patients admitted for heart failure, Quarterly Journal of Medicine, 2004;97:803-808

18 Willems DL, Hak A, Visser F, Van der Wal G. Thoughts of patients with advanced heart failure on dying. Palliative Medicine 2004; 18:564-72.

19 Zambroski, C., H. (2006) “Managing beyond an uncertain illness trajectory: palliative care in advanced heart failure”, International Journal of Palliative Nursing; Vol.12, no.6, p566-573

20 Bruera E, Kuehn N, Miller M, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. Journal of Palliative Care 7:6-9, 1991.

21 Brannstrom M, Ekman I, Boman K, Strandberg G. Being a close relative of a person with severe, chronic heart failure in palliative advanced home care- a comfort but also a strain. Scandinavian Journal of Caring Sciences 2007;21:338-44.

22 Ward, C. Improving access to financial support for heart failure patients: understanding the claims process and the doctor’s role. Br J Cardiol 2007;4:275-9

23 Selman L, Harding R, Beynon T, Hodson F, Coady E, Hazeldine C, Walton M, Gibbs L, Higginson I. Improving end of life care for patients with chronic heart failure: “Let’s hope it’ll get better, when I know in my heart of hearts it won’t.” Heart 2007;93:963-7.


24 Millerick Y. Integrating palliative care recommendations into clinical practice for chronic heart failure. Br J Cardiac Nursing 2008:Vol. 3 No. 12, p579-585.

25 Stewart S, McMurray JJV. Palliative care for heart failure. BMJ 2002;325:581-85.

26 NHS Quality Improvement Scotland. Clinical Standards Heart Disease 2010.

27 Rocchiccioli JP, McMurray JJV. Medical management of advanced heart failure. Progress in Palliative Care 2008; 16:229-240.

28 Zambroski CH, Bekelman DH. Palliative symptom management in patients with heart failure. Progress in Palliative Care 2008; 16: 241-249.

29 Davidson PM, Dracup K, Philips J, Daly J, Padilla G.Preparing for the worst while hoping for the best: the relevance of hope in the heart failure illness trajectory. J Cardiovascular Nursing 2007;22:159-165.

Appendix 9 References

beatingheartdisease together

© British Heart Foundation 2010, a registered charity in England and Wales (225971) and in Scotland (SC039426)

British Heart FoundationGreater London House 180 Hampstead Road London NW1 7AW Phone: 020 7554 0000Fax: 020 7554 0100 Website: bhf.org.uk

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