Primary Palliative Care: Research Beyond Cancer Dr Marilyn Kendall Primary Palliative Care Research Group, University of Edinburgh http://www.chs.med.ed.ac.uk/gp/research/ppcrg.php
Profile of People who die UK1900 / Age at death 46 • Top 3 causes 1. Infectious diseases 2. Accident 3. Childbirth
UK 2000 Age at death 78 • Top 3 causes 1. Cancer 2. Organ failure 3. Frailty/ dementia
• Disability before death Not much
Disability before death Months - many years
1. Primary care can deliver end of life care for all in need Function Function High
High
Death Low
Organ failure
GP has 20 deaths per list of 2000 patients per year Acute
Death Low
Months or years
Cancer
6 2
5 7
Weeks, months, years
Function High
Death Low
Dementia, frailty and decline
Many years
Gold Standards Framework
Cancer
Function High
3 Plan 2 Assess Palliative care register
Function High
Death
1 Identify
5
6 Organ failure
?
7
Low
Time
Function High
??? Death
Low
Death Time
Low
Dementia, frailty and decline
Time
Lung Cancer and Heart Failure Study in Lothian BMJ 2002
BMJ Feb 2011
Organ System Failure Trajectory (heart, lung, liver … failure)
Function
High
Low Frequent admissions, selfcare becomes difficult
Death
Time
~ 2-5 years, but death usually seems “sudden”
Needs: acute care for exacerbations, chronic care, support at home*. No service designed to routinely meet the needs of this pattern of decline *No one seems to believe we have got this even half right. Delamothe T. BMJ 2009;338:b11457
Lung Cancer and Heart Failure Study in Lothian BMJ 2002
Lung cancer and heart failure • Acute disease trajectory • concern re diagnosis and prognosis • How long have I got?
• Progressive disability trajectory • little understanding of diagnosis and prognosis • I know it won’t get better, but I hope it won’t get any worse
Lung cancer and heart failure • swinging between hope and despair
• daily grind of hopelessness
• lung cancer overriding concern
• many other illnesses to cope with; heart often not seen as main concern
• treatment calendar dominates life, many services and professionals
• shrinking social world dominates life, may not have any human company
Main findings summary • Services under-developed • Patients and family carers feel unsupported • Little understanding of condition, treatment aims or prognosis • Quality of life severely compromised • Need models of care that focus on quality of life, symptom control and psychosocial support alongside active treatment.
Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A. Patterns of social psychological and spiritual decline towards the end of life in heart failure. J Pain Sympt Man 2007; 34: 393-402
Carers’ trajectory • Murray SA, Kendall M, Boyd K, Grant L, Highet G, Sheikh A Archetypal trajectories of social, psychological and spiritual well being and distress in family care givers of patients with lung cancer BMJ 2010
BMJ Feb 2011
Main findings summary • Services under-developed • Patients and family carers feel unsupported • Little understanding of condition, treatment aims or prognosis • Quality of life severely compromised • Need models of care that focus on quality of life, symptom control and psychosocial support alongside active treatment.
Needs ... Social isolation Loss of social functioning Disabling symptoms
Inappropriate housing
Lack of information
Depression
“.. it will eventually go down hill like so there is not really any future in it”
[F07.1]
... and services Difficulty accessing care Hospital avoidance Limited resources Reactive care Time Workload “We really only see him when he’s not well and we never take the time to go out and chat to him about these things when he is feeling a bit better, you know,” [F08: GP]
The story of two studies
• 20 people with inoperable lung cancer • In-depth interviews • Every four months for one year • Patient, family and professional carer
• 20 people with severe COPD • In-depth interviews • Every six months for two years • Patient, family and professional carers
Lung cancer stories … it might be best if you kind of started at the beginning really, of how you first found out that you were ill, and … “I was just going to say that, it was a shock. Well going back, end of October, I thought I had, there was a lot of flu on the go, I thought I had the flu, I felt terrible, this went on for about 3 weeks, I went to the GP ‘Oh take paracetamol, it’s a virus’, I went back about a week later, I said ‘Look I’m really, really terrible’, ‘Oh, it’s Ok, it’s a virus, just carry on’, so I went back to the Doctor I think it was eh, 30th December, I ended up going to the Doctor, the day before Hogmanay, and eh, she right away said ‘No, this has went on too long’. It was a different, it’s the same practice, but a different Doctor, and then she’s got the needle out, I said ‘I hate needles’, ken, so she said ‘Too bad’, she done all the tests, sent me for an x-ray along to Hospital K., I got a phone call the next day from the Doctor saying ‘Go and collect prescriptions, they had found a shadow on my lung’, but they obviously thought this was some infection I had, so, there was a holiday period, the Hogmanay and that, so I had to go back and see her a week later, once all the tests were done. So I went in and seen her and she looked at me and she said ‘You know, you’re a very sick man. We don’t know what’s wrong with you, it could be TB’ ……..”
Mr MM
[3 sides of A4]
A story with no beginning.... Can you tell me how your illness started, and what has happened since then?
A story with no beginning.... “I’ve had it forever” T06.1
T06.1
T06.1
How it started is anybody’s guess; there is no way of knowing. ….. so it has always been my belief that something happened in my younger years that started the damage I always seemed to find it more difficult than other kids Well, there were things that I used to avoid doing because I got tired out too quickly, not realising what it was.
The cancer story
COPD: a story without a beginning
“Well end stage is from the beginning, isn’t it, to a certain extent?” [F07:nurse]
Implications of a story with no beginning • •
Can’t separate the life story from the illness story No biographical disruption, just ‘natural’ ageing
•
Because the COPD story does not start with the possibility of death it is difficult to discuss death at the end of the trajectory
•
If COPD is ‘just a way of life’ how and when is death contemplated?
•
We need to acknowledge the importance of the beginnings in shaping the end
‘Milestones not registers’? 3 Plan 2 Assess Palliative care register
1 Identify
Should we stop looking for a transition point to palliative care for people with COPD? ..and instead ensure holistic, pro-active, well coordinated, supportive care, throughout the lifetime illness
Earlier rather than later.
Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:1007-1011.
Copyright ©2005 BMJ Publishing Group Ltd.
Frailty trajectory
3) All dimensions: Spiritual needs • Everyone has them if faced with a serious illness • Accepted definition used internationally • Relates to meaning and purpose of life • People may or may not use religious vocabulary • Such needs may cause distress Murray SA, Kendall M, Worth A, Boyd K, Benton TF, Clausen H. Exploring the spiritual needs of people dying of lung cancer or heart failure: prospective qualitative interview study. Pall Med 2004;18:39-45
4 All nations: Primary care can provide integrated care in the community
Liz Grant Murray SA, Grant E, Grant A, Kendall M. Dying from cancer in developed and developing countries. BMJ 2003;326:368-72.
Out of Hours Care in Lothian BJGP 2006
Research Methods
Key challenges and ways forward in researching the “Good Death” Kendall, Harris, Boyd et al BMJ March 2007 Plus: Kendall, Murray et al use of multi-perspective Qualitative interviews BMJ 2009 Murray, Kendall et al Use of serial qualitative interviews BMJ 2009
User Involvement
• • • • • • • • • •
Does the cancer model fit at all? What kinds of interventions might work? What bits of the field need developing? Carers Evaluating qualitatively Dementia and frailty Methods Hard to reach groups Over zealous treatment Other settings
5 key aspects of primary palliative care 1. All illnesses
3. All dimensions
2. Earlier than later
4. All nations
5. All settings
