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Study Funder: NIHR Research for Patient Benefit Programme GrantStudy Sponsor: University of Cambridge
“Had he had cancer I’d have been fine”: inequalities in care provision at the end of life
Emily Moran, Sue Boase, Brooke Swash and Stephen Barclay
BSA Death, Dying and Bereavement study group: 14 November 2014
University of Cambridge
Background
• 500,000 deaths per year in England and Wales; increasing by 17% by 20301.
“How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole
and a litmus test for health and social care services.”End of Life Care Strategy, 20082
1. Gomes, B. & Higginson, I.J., 2008. Where people die (1974-2030): past trends, future projections and implications for care. Palliative Medicine, 22, (1) 33-41. 2. Department of Health, 2008, End of Life Care Strategy: promoting high quality care for all adults at the end of life, Department of Health, London.
Background
• “Palliative care” largely evokes ideas of end-stage cancer patients - only one quarter of patients die from malignant disease
“In order to increase choices for patients with cancer we will double the investment going into palliative care services…”
Labour Party Manifesto, 20053
• National Institute for Health and Care Excellence (NICE)4 guidelines:
“People with advanced life threatening illnesses and their families should expect good end of life care, whatever the
cause of their condition.”
3. Labour Party, 2005. Britain forward not back: the Labour Party manifesto 2005, Labour. 4. National Institute for Health and Care Excellence, 2012, Quality standard for end of life care for adults. QS13. National Institute for Health and Care Excellence, London.
Background
5. Murray SA, Kendall M, Boyd K, Sheikh A. 2005. Illness trajectories and palliative care. BMJ2005;330:1007-11.
Time
Fun
ctio
n
High
Low
Death
Cancer (25%)
Organ failure (30%)
Physical & cognitive frailty (35%)
The three main trajectories of decline at the end of life5
[Other (10%)]
Background
• Improvement in non-cancer patients identified as “end-of-life” and placed on palliative care registers6, however…
• VOICES Survey7 indicates differences in quality of care received:
0
10
20
30
40
50
60
Cancer CVD Other
% rated outstanding /excellent
6. Department of Health, 2012, End of Life Care Strategy; fourth annual report, Department of Health, London.7. Office for National Statistics 2014, National Survey of Bereaved People (VOICES).
Community Care Pathways at the End of Life (CAPE)
• 4 phase, multi-method study
• Aim to address whether focus on place of death is helpful in end-of-life care.
• To use extracts from focus groups and individual interviews to explore the views of bereaved informal carers and healthcare professionals on end-of-life care provision for different disease groups at the end of life
• Completed to date: 10 focus groups, 10 carer interviews, 4 DN interviews, 4 GP interviews
Aim
Equity of care
“I mean, somebody with… you know, just for the sake of argument, who’s diagnosed with cancer and has got three months to live, the issues involved in that are very different to somebody who may live for ten
years.”C2601, husband of non-cancer patient
“And the other thing I felt all the way along was that had he got cancer I’d have been fine […] I’ve had two or three girl friends of mine who have died
of cancer at home and the support they’ve had has been phenomenal.”C1302, wife of non-cancer patient
Access to services: cancer
“So I rang somebody that evening and just said, “Help.” I think I ended up with a Marie Curie nurse […] whoever contacted her they asked if she
would call in on her way home, off-duty. So she came that evening from the hospital on her way home.”
“The doctor’s surgery put us into touch with Macmillan nurses and we had one of their persons came to see us, was very nice, did her
assessment.”C2602, husband of cancer patient
Access to services: non-cancer
“I couldn’t get Marie Curie unless I was referred and as I say it was only by fluke that somebody else had died that she came that night.”
“Well, that was just a stroke of luck more than anything else.”C1302, wife of non-cancer patient
“Principal difficulty really is finding out about things. There is no central place you can go to to find out what can be provided and you learn things partly by looking
at the internet, partly by luck, partly by what somebody says to you.”
“Things like night sits […] they desperately need looking at for people who have that sort of situation where it’s perhaps been a long-term condition and the carer
is just getting totally worn out.”C2601, husband of non-cancer patient
Palliative care
“Really a diagnosis of motor neurone disease, in truth, is a terminal diagnosis […] So really terminal care starts the day you get the diagnosis.”
C2601, husband of non-cancer patient
“It was only a few days, very quick, and that’s when they told us he had the bowel cancer […] and also it was terminal.”
C2301, wife of cancer patient
“I said [my husband] was just receiving palliative care and he said to me, ‘When was his cancer diagnosed?’. I said, ‘He doesn’t have cancer; that’s
not the only thing you die of.’”C1302, wife of non-cancer patient
Clinician perspectives on palliative care
“[Macmillan] certainly have been encouraging referrals from non-cancer patients, but I guess the majority of palliative care patients a lot of the time are… all the ones that need kind of more input from the hospice tend to be cancer patients.”
District Nurse 2503
“It’s a bit more difficult to know the timeframe of some of these people but they are nonetheless palliative.”
GP 1903
“With most of the cancer patients there was definitely an end of life care […] there was a template we had to fill out […] With these [non cancer] sort of
patients there’s no specific kind of plan as such.”GP 1508
End-of-life discussions
“The [cancer] trajectory is more predictable, whereas with sort of non-cancer […] it’s a bit less predictable when people are going to deteriorate I
think, and I think a lot of people don’t really want to think about the fact that it’s a terminal illness.”
GP 2001
“They haven’t got necessarily a label like having cancer, which allows you to maybe talk about it, but if it’s just, well, not ‘just’, but if it’s heart failure,
it’s a bit more difficult to have that conversation.”GP 1903
End-of-life discussions
“If you think about a fractured neck of femur, which is a non-cancer event, the morbidity and mortality of a fractured neck of femur in a 90 year old is
worse than a cancer diagnosis in terms of what will happen in a year’s time […] You might not get back to what you were doing and you might even die in the first year […] But we say, “Oh, you only broke your hip
love”, you know. Whereas if that had been a bowel cancer, the conversation would be, “You’ve got something that isn’t treatable, that is
going to get worse. Are you prepared for that?” […] You’d be quite upset if someone said, “I know you’ve broken your hip and a nice surgeon put a
screw in it, but you know that you’ve got a 25% [chance] of being dead in a year’s time.”
GP 1805
End-of-life discussions
“And I think it was probably towards the end of [month] that he just said to me, “I am dying and I know I'm dying” and I honestly thought, “Yes I think
you are”. Because he just had nothing to live for. […] We had various doctors coming out from the surgery all of whom were very nice, but all of whom said, “No, no you’re not dying”. […] So each doctor came out, one
decided he was depressed and therefore put him on antidepressants. Another came out and decided he was suicidal, he wasn’t suicidal he just
wanted to die, he had no means to kill himself and I wouldn’t have assisted him in that anyway. But we both wanted, and we couldn’t seem to
get this across, what we wanted for him was good palliative support so that his dying would be a peaceful, comfortable experience if you like, for
both of us.”C1302, wife of non-cancer patient
Summary of key points
• Care received by non-cancer patients considered fundamentally different to that received by cancer patient
• Carers (and patients?) feel at a disadvantage when faced with a non-cancer diagnosis
• GPs feel less confident approaching end-of-life issues with non-cancer patients
Implications
• Non-cancer patients can be excluded from the planning of their care, from being able to voice their preferences, and from having these preferences met.
• Broader than just a medical issue until there is a greater understanding of the terminal nature of other disease groups.
