Post on 15-Dec-2015
Dying to Talk
GP Refresher Course Stephanie Barker
Spring 2010 Consultant Nurse
GP Refresher Course Page 2 Spring 2010
Factors considered important at end of life by patients, families and care providers
Consistently rated as important:
Pain and symptom management.
Preparation for death
Achieving a sense of completion
Decisions about treatment preferences
Being treated as a “whole” person
Steinhauser et al JAMA 2000
GP Refresher Course Page 3 Spring 2010
Talking to families about difficult subjects
Some individuals/families do not want to talk
Respecting difference and not forcing the issue
Creating opportunities for conversation
Responding to the cues patients and families give us – they are not always direct
GP Refresher Course Page 4 Spring 2010
What do patient/family members want/need to talk to us about?
Information context:
Course of the illness?
Treatment options?
Outcome?
Practicalities e.g. finance, grants, etc ?
GP Refresher Course Page 5 Spring 2010
What do patient/family members want/need to talk to us about?
Emotional context:
Fears?
Uncertainty?
Changes in relationships?
Adapting to new roles and responsibilities?
Talking with other people – especially children?
Being normal?
GP Refresher Course Page 6 Spring 2010
Challenging conversations
Some examples:
Discontinuing disease specific treatments. Dealing with conflict eg differing family opinion Introducing Specialist Palliative Care Services Discussing life expectancy or prognosis Discussing future symptom management Advance care planning. Discussions about CPR Discussions about the process of death and
dying
GP Refresher Course Page 7 Spring 2010
Patient Pathway
supportive andpalliative care
deterioration death/bereavement
Assess need
Identify needs
Plan
Implement
Review
PPC GSF LCP
Preferred Priorities for Care (PPC)Gold Standards Framework (GSF)Liverpool Care Pathway (LCP)
GP Refresher Course Page 8 Spring 2010
“Cancer” Trajectory, Diagnosis to Death
TimeOnset of incurable cancer-- Often a few years, but decline usually < 2 months
Fun
ctio
n
Death
High
Low
Cancer
Possible referral to
SPCS
GP Refresher Course Page 9 Spring 2010
Organ System Failure” TrajectoryF
unct
ion
Death
High
Low
(mostly heart and lung failure)
Begin to use hospital often, self-care becomes difficult
~ 2-5 years, but death usually seems “sudden”
Time
GP Refresher Course Page 10 Spring 2010
“Dementia/Frailty” Trajectory
Time Quite variable -up to 6-8 years
Death
High
Low
Onset could be deficits in ADL, speech, ambulation
Function
GP Refresher Course Page 11 Spring 2010
Consequences of poor communication
Psychological distress and morbidity
Poor adherence to treatment
Reduced quality of life
Dissatisfaction with care
Complaints and litigation
Potential burnout in healthcare professionals
GP Refresher Course Page 12 Spring 2010
GP Refresher Course Page 13 Spring 2010
Barriers to effective communication
Fears
Beliefs/attitudes
Skills
Working environment
Consider HCPs and patients
GP Refresher Course Page 14 Spring 2010
Barriers (1)
Fears
Unleashing strong emotions
Upsetting patients/relatives
Patient refusing treatment
Difficult questions
Damaging the patient
Beliefs
Emotional problems are inevitable
Not my role
Talking raises expectations
Patient will fall apart
Will take too long
GP Refresher Course Page 15 Spring 2010
Barriers (2)
Lack of skills
Assessing knowledge and perceptions
Integrating medical and psychosocial modes of enquiry
Handling difficult reactions
Working environment
No support or supervision
No referral pathway
Staff conflict
Lack of time
GP Refresher Course Page 16 Spring 2010
Blocking Behaviours
Physical questions
Inappropriate information
Closed questions
Multiple questions
Leading questions
Passing the buck
Defending
Jollying along
Chit chat
GP Refresher Course Page 17 Spring 2010
Challenging conversations
Some examples:
Discontinuing disease specific treatments. Dealing with conflict eg differing family opinion Introducing Specialist Palliative Care Services Discussing life expectancy or prognosis Discussing future symptom management Advance care planning. Discussions about CPR Discussions about the process of death and
dying
GP Refresher Course Page 18 Spring 2010
Immediate consequences of avoidance
Patient becomes preoccupied with undisclosed concerns
Failure to take in information
Selectively recalling negative phrases
Remains distressed
GP Refresher Course Page 19 Spring 2010
In Practice
It can be difficult to talk about loss, transition and death because:
The practitioner may not create an opportunity to have such a conversation or may close it down if it arises
It is hard to put thoughts that have a high emotional context into words
The stark language of illness and dying
GP Refresher Course Page 20 Spring 2010
Some general principles for managing challenging conversations
Use of generic communication skills using an empathic, warm, patient centred style (builds trust).
Explore patient understanding
Explore ICE
Use of open questions with an emotional content
Clarifying patient or carer concerns
Allow enough time
Maintain hope
GP Refresher Course Page 21 Spring 2010
What is Hope?
Stanley (1978)
• A belief that a personal tomorrow exists
Fitzgerald (1971)
• A positive expectation that goes beyond visible facts
Owen (1989)
• A motivating force, an inner readiness to reach goals
GP Refresher Course Page 22 Spring 2010
Health professionals’ positive influences on hope
Response
Taking time to talk
Giving information
Being friendly, polite
Caring behaviours
Being helpful
Just ‘being there’
Being respectful
Being honest
%
46
41
38
34
34
25
22
19
Koopermeiners et al(1997)
GP Refresher Course Page 23 Spring 2010
Health professionals’ negative influences on hope
Doctors
Gave discouraging medical facts
Disrespectful presentation of information
Cold
Felt sorry for the patient
Conflicting information between Doctors
Trivialised the situation
Candid (without being positive)
Poor communication
Nurses
Mean
Disrespectful
GP Refresher Course Page 24 Spring 2010
False Hope
We are sometimes tempted to “inject hope”, often with the encouragement of the
patient, because their pain makes us so uncomfortable. What we need to realise is that false hope only relieves the patients pain for a moment and will create worse
pain later on when the hopes are not fulfilled.
Buckman
GP Refresher Course Page 25 Spring 2010
Hope enhancing strategies
Reassure the patient that a support system or team will be there for them throughout their illness. Emphasise what can be done Reassure the patient that there are treatments available for controlling symptoms Don’t make unrealistic promises eg that a patient will be totally pain free Identify where patient has control eg ACP Respect the patient’s coping strategies eg denial. Recognise the spectrum of hope that may be being simultaneously expressed. Respect the patient’s wishes to explore alternative or experimental treatment provided they have adequate information to make an informed choice
GP Refresher Course Page 26 Spring 2010
Key points
Patients don’t always raise difficult topics spontaneously and this means the HCP needs to be proactive
What does the patient understand?
What does the patient want/expect?
Many of the end of life conversations that HCP’s havewith patients or family members are difficult and require skill, warmth and sensitivity in equal
measure
Maintaining hope in a realistic way
GP Refresher Course Page 27 Spring 2010
Further reading
Handbook of Communication in Oncology and Palliative Care (2010) Ed. David Kissane, Barry Bultz, Phyllis Butow & Ilora Finlay. Oxford University Press
Clinical practice guidelines for communicating prognosis and end of life issues with adults in the advanced stage of life-limiting illness and their caregivers.(2007) Josephine Clayton, Karen Hancock, Phyllis Butow, Martin Tattersall &David Currow
www.mja.cm.au/public/issues/186_12__180607/cla11246_fm.html