A novel palliative care hotline for multiple sclerosis · A novel palliative care hotline for...
Transcript of 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
Slide 2
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
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Interagency project Center of Palliative
Medicine
University Hospital of Cologne
German MS Society (DMSG)
State association of North-Rhine-Westphalia
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 4
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 5
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 8
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…
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 9
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 10
Multiple Sclerosis - Palliative Care!
MS Patients
Informal caregivers
No awareness of PC
PC Services
- services services
Focus on cancer
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 11
Development of the hotline's concept
Best practices for conducting calls
Complementary service to their MS-helpline
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
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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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 15
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
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Introducing the hotline: Leaflets
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 17
Introducing the hotline: Leaflets
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 18
Introducing the hotline: Leaflets
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 19
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 20
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 21
Conducting calls
Client centered communication technique
Empathic understanding
Unconditional positive regard
Authenticity Authenticity
Speak openly Confidence in consultation
Rogers C. 1965 Client-Centred Therapy
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 22
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 23
Documenting calls
Case report form • Demographic data • Disease related data • Day & duration of call • Statements concerning
- Death & dying - Hastened death - Suicidal ideation
+ Additional notes
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 24
IRB-approval
Approval from the Ethical Committee of the University of Cologne, Germany
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 25
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 26
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 27
Evaluation of the hotline
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 28
Evaluation of the hotline
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.”
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 29
Evaluation of the hotline
Eligible callers: n = 10
Patients: n = 6
Informal caregivers: n = 4
n = 1 n = 5 n = 1 n = 3 Husband • 2 daughters
• 1 friend
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 30
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 31
Evaluation of the hotline:
Constipation
Underweight Pneumonia
Complications & comorbidities
Cancer
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 33
Evaluation of the hotline
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 34
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 35
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 36
Evaluation of the hotline
“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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 37
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 38
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 39
Discussion – Low number of callers
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 40
Discussion – Low number of callers
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 41
Discussion – Low number of callers
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 42
Discussion – Low number of callers
• How many severely affected patients live in the study setting?
• Are 18 callers a significant proportion?
Future research!
Prevalence of severe MS?
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 43
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?
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 44
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 45
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
4/2/14 | A palliative care hotline for multiple sclerosis | Andrea Knies
Slide 46
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
Operating the hotline • Integration into existing service • Extensive office-hours • Medical expertise favorable • Client centered approach • Calgary Cambridge Guide
Operating the hotline • Integration into existing service • Extensive office-hours • Medical expertise favorable • Client centered approach • Calgary Cambridge Guide