A novel palliative care hotline for multiple sclerosis · A novel palliative care hotline for...

4/2/14 | Andrea Knies

A novel palliative care hotline for multiple sclerosis: An interagency project in Germany

4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies

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Workshop objectives

1.  Review pilot year of the palliative care counseling hotline for multiple sclerosis

-  What did we do? -  How did we do it? -  Preliminary outcomes

2.  Discuss strengths and weaknesses -  Hotline´s benefits -  Lessons learned -  Recommendations for future projects


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Interagency project Center of Palliative

Medicine

University Hospital of Cologne

German MS Society (DMSG)

State association of North-Rhine-Westphalia


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Multiple Sclerosis (MS) – some facts

•  Chronic inflammatory autoimmune disease of the CNS •  Symptoms

-  Physical dysfunctions, Fatigue, Spasticity, Pain, Bladder and Bowel problems, Ataxia etc.

-  Psychological distress

•  Approx. 120,000 out of 80 Mio. Germans affected by MS

Image © 2009 RelayHealth and/or its affiliates


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Focus: Patients feeling severely affected by MS

What does it mean to feel severely affected by MS? (n = 1,110)

•  Subjective affectedness associated with EDSS-score •  Reasons: Immobility (56%) and fatigue (27%) EOL-communication preferences of patients feeling

severely affected by MS (n = 867) •  Disease progression (80%), nature of progression

(76%), advance decision making (75%) and death & dying (35%)

Strupp et al 2012 Palliat Med Buecken et al 2012 Patient Educ Couns


Slide 6 Golla et al 2012 Palliat Med

Galushko et al 2014 J Palliat Med

Unmet needs of patients feeling severely affected by MS (Patients’ and health professionals’ perspective)

1.   Support of family and friends

in order to avoid family break-ups

2.   Healthcare services

e.g. access, information, coordination…

3.   Managing everyday life

4.   Maintaining biographical continuity

due to loss of identity because of the disease

Focus: Patients feeling severely affected by MS


Slide 7

Cicely Saunders Institute, King´s College, London

Higginson et al. 2006 J Palliat Care

Symptom severity & prevalence in severe MS

•  Mean number of symptoms reported: 9

•  > 50% of patients reported -  Problems using legs or arms

-  Fatigue/lack of energy/feeling sleepy

-  Spasms

-  Pain

  Symptom severity & prevalence in severe MS is comparable to advanced cancer


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So what…?

Conventional MS healthcare does not address all of these symptoms, needs and concerns…

However… There are findings that severely affected MS patients

may benefit from Palliative Care…


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Multiple Sclerosis – Palliative Care (PC)!

RCT: Evaluation of fast track PC assessment and follow up

Edmonds et al. 2010 Mult Scler

1.   Relief of 5 key symptoms: •  Pain

•  Nausea

•  Vomiting

•  Mouth problems

•  Sleeping difficulties

2.   Relief of caregiver burden


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Multiple Sclerosis - Palliative Care!

MS Patients

Informal caregivers

No awareness of PC

PC Services

-  services services

Focus on cancer


Slide 11

Development of the hotline's concept

Best practices for conducting calls

Complementary service to their MS-helpline


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Objectives of the hotline

1.  Provide information about PC 2.  Assess eligibility for PC 3.  Provide access to local PC services

Interest in communicating about

•  Potential disease progression

•  Advance decision making

•  Death & dying

+ Collect callers statements concerning death & dying


Slide 13

Participants & setting

Participants 1. Patients feeling

severely affected by MS 2. Their (in)formal

caregivers

Study setting

4.3 million inhabitants

= 5% of the German population


Slide 14

Availability of PC services in study setting

Available services Number

Palliative care units in hospitals 5

Specialized outpatient PC Teams 2

Nursing services providing PC 19

Physicians specialized in PC 33

Hospices 10

Voluntary community hospice services 55


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Office hours of the hotline

June 2011 – January 2012

January – May 2012

Mon Tue Wed Thu 4 – 6 pm

Mon Thu 10am – 1pm 2pm – 6 pm

8 hours/week 14 hours/week + Cities of Aachen & Düsseldorf

1 June 2011 – 31 May 2012


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Introducing the hotline: Leaflets


Slide 17



Slide 18


Introduction to PC

Boundaries

Aims

Office hours

Target group

Provider

Leaflets

Center for Palliative Medicine in cooperation with DMSG

•  MS-patients

•  (In)formal caregivers

Cologne/Bonn area

Mon – Thu: 4-6pm

•  What is PC?

•  What can PC do for me?

•  How can I make use of PC?

•  No medical consultation

•  No pastoral consultation

•  No emergency medicine

•  No guaranteed eligibility for PC

•  Not only for cancer patients

•  Improvement of QoL

•  Home care services


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Introducing the hotline: Article in patient magazine

•  More extensive version of leaflet •  Published just days before the start/extension of the hotline •  Permanent online-version http://www.dmsg-koeln.de/index.php?option=com_content&view=article&id=71


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Background & training of hotline operator

•  B.A. and M.A. in Psychology •  No medical background online training on MS •  2-day seminar in client centered communication technique


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Conducting calls

Client centered communication technique

Empathic understanding

Unconditional positive regard

Authenticity Authenticity

Speak openly Confidence in consultation

Rogers C. 1965 Client-Centred Therapy


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Conducting calls

Initiation

Information & relationship

Structuring

Explanation & planning

Closing

•  Introduction

•  Welcome

•  Query

Caller´s individual situation

(CCCT)

•  Summary

•  Completeness

•  Top needs

•  Eligibility assessment

•  Nature of PC

•  Individual relevance

•  Referral

•  PC services

•  Grasp

•  Questions

Silverman J, Kurtz S and Draper J. 2005 Skills for communicating with patients.

Calgary Cambridge Guide


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Documenting calls

Case report form •  Demographic data •  Disease related data •  Day & duration of call •  Statements concerning

-  Death & dying -  Hastened death -  Suicidal ideation

+ Additional notes


Slide 24

IRB-approval

Approval from the Ethical Committee of the University of Cologne, Germany


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Evaluation of the hotline

Convenience sampling All callers who called the hotline during its pilot year

between 1 June 2011 and 31 May 2012 Data analysis •  Descriptive Statistics •  On individual case basis


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Evaluation of the hotline – who called?

Total callers: n = 18

Patients: n = 11

Informal caregivers: n = 4

Formal caregivers: n = 3

n = 3 n = 8 n = 1 n = 3 n = 2 n = 1 Self-help group

Neurologist Physical therapist

Callers included in analysis: n = 15


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How did callers learn about the hotline?

0

1

2

3

4

5

6

Leaflet Article in patient-magazine

Online version ofarticle

ND

Means of Introduction

Num

ber o

f cal

lers


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n = 15

Relevant queries: n = 11 Irrelevant queries: n = 4

Explicitly directed at PC:

n = 7

Not explicitly directed at PC:

n = 4

Callers eligible for PC:

n = 6 n = 4 n = 10

“Is MS curable? What are treatment

options?”

“I would love to take my severely disabled wife out for social events, but we

have no car.”


Slide 29


Eligible callers: n = 10

Patients: n = 6

Informal caregivers: n = 4

n = 1 n = 5 n = 1 n = 3 Husband •  2 daughters

•  1 friend


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Evaluation of the hotline: Symptoms

1

2

3

4

5

Bladder/Bowel problems, Cramps, Decubitus, Fatigue, Dyspnoea, Hyperesthesia, Incontinence, Insomnia, Loss

of appetite, Nausea, Vomitus,

Dysarthria, Cognitive Impairments, Spasms, Sight disorders, Tetraplegia

Dysphagia

Pain

Symptoms (M = 5, SD = 3.5)

Range: 0 - 9

Anarthria, Hemiparesis, Hemiplegia, Tetraparesis, Trunk control, Vertigo

, Spasticity

Depression


Slide 31

Evaluation of the hotline:

Constipation

Underweight Pneumonia

Complications & comorbidities

Cancer


Slide 32

Evaluation of the hotline: Care and nursing Particular care needs (ND = 3)

•  Wheelchair (n = 3) •  Total parenteral nutrition (n = 2) •  Catheder (n = 2)

Place of care

•  Home (n = 7) •  ICU (n = 2) •  Nursing home (n = 1)

Nursing Service* (ND = 1)

•  None (n = 2) •  Once per week (n = 2) •  Five times per week (n = 1) •  Twice per day (n = 1)

* For patients living at home


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Role of death & dying

Apprehensive recognition of impending death: n = 4

Wish for hastened death: n = 3

Suicidal ideation: n = 2

Suicide attempt: n = 1


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Evaluation of the hotline: Recommendations

Available services Number Recommended PC units in hospitals 5 3 Specialized outpatient PC Teams 2 1 Nursing services providing PC 19 2 Physicians specialized in PC 33 2 Hospices 10 - Voluntary community hospice services 55 - Local PC network 2 PC consultation service in hospital 1

n = 11


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Evaluation of the hotline: Mrs. J. Sex and age Female, 65 years old Type and duration of MS PPMS*; 15 years

Symptoms (n = 7)

Tetraplegia, Spasticity, Hyperestesia, Pain Insomnia, Incontinence, Major depression

Complications Underweight (< 100lb) due to loss of appetite

Particular care needs Wheelchair, Urinary catheder

Place of care Nursing home (specialized in Alzheimer´s disease)

Wish for hastened death Yes

Suicidal ideation Yes

Advice Admission to Center of Palliative Medicine

Result Admission to Center of Palliative Medicine * Primary Progressive Multiple Sclerosis


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“I live now my new life -

content without pain and suffering. My body is indeed constrained,

but my thoughts fly far and wide.” With kind permission of the author


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Discussion – Value of PC for MS

Burden of disease

Physical Psychological

Depression Wish for hastened death Deterioration

Recognition of death

Suicidal ideation

Completed suicide EOL-care

Feinstein 2011 Mult Scler J Sumelahti et al 2010 Mult Scler Ragonese et al Eur J Neurol

Palliative Care


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Discussion – Low number of callers

Mon Tue Wed Thu 4 – 6 pm

No opportunity for morning calls

No opportunity for calls on certain days

Mon Thu 10am – 1pm 2pm – 6 pm

June 2011 – January 2012 January – May 2012

Office hours


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Article in patient-magazine (+ online version) •  Magazine accessible only for paying members of the

German MS Society •  Online version cohort effect? Language-effect?

  McInturff & Harrington, 2011

Leaflets •  Wrong medium?

  Wenk et al., 1993; Broadstock & Hill, 1997

Advertising


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I do not know what

PC is…

PC = EOL

I do not want to scare my patients

PC may “steal” my

patients

My patients do not need

PC

I can deliver PC myself

Healthcare providers

McInturff & Harrington 2011 Center to Advance PC; Golla et al 2014 BMC

Palliative Care; Fadul et al 2009 Cancer Snow et al 2009 J Palliat Med

PC cannot meet my patients´ needs


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I do not know what

PC is PC is only for cancer

patients

I cannot make the

call I do not know about the hotline

I do not want any more

people to be involved in my

care

I do not have to die

yet!

Patients

Golla et al 2014 BMC Palliative Care; McInturff & Harrington 2011 Center to Advance PC;

Mahtani-Chugani et al. 2010 Palliat Med


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•  How many severely affected patients live in the study setting?

•  Are 18 callers a significant proportion?

Future research!

Prevalence of severe MS?


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Summary – Low number of callers

•  How many severely affected MS patients exist? •  Are they aware of our hotline? •  Do they feel comfortable about calling our hotline? •  Can they actually make the call? •  Does the hotline provide adequate office hours?


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Conclusion

In the long run: Offering PC at an earlier stage of the disease, ideally through integration into neurological care (e.g.: joint consultations once per week)  Closing the barn door before the horse has escaped? June 2012: Interdisciplinary workshop •  Defining criteria for eligibility for PC •  Discussing options for joint consultations

Edmonds et al. 2010 Mult Scler


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Conclusion

Meanwhile: PC hotline for MS = valuable provisional tool for •  Learning about PC and its potential benefits •  Guidance on referral issues •  Access to PC   Relief of pressing concerns (e.g. wish for hastened death)   EOL-communication

German MS Society will support the nationwide extension of the hotline with a grant of $40,000


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Lessons learned… recommendations:

Introducing the hotline •  Mass media! (TV, radio, newspaper) •  Accompanying homepage •  Collaboration with physicians, nursing services, pharmacies, patient organizations •  Informal caregivers

Operating the hotline •  Integration into existing service •  Extensive office-hours •  Medical expertise favorable •  Client centered approach •  Calgary Cambridge Guide




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Thank you very much for your attention!

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