“Had he had cancer I’d have been fine”: inequalities in care provision at the end of life by Emily Moran, Sue Boase, Brooke Swash and Stephen Barclay
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“Had he had cancer I’d have been fine”: inequalities in care provision at the end of life by Emily Moran, Sue Boase, Brooke Swash and Stephen Barclay - a presentation at the BSA Death, Dying and Bereavement Study Group Conference in November 2014.
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“Had he had cancer I’d have been fine”: inequalities in care provision at the end of life by Emily Moran, Sue Boase, Brooke Swash and Stephen Barclay
- 1. Study Funder: NIHR Research for Patient Benefit Programme Grant Study 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
- 2. 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.
- 3. 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.
- 4. Background 5. Murray SA, Kendall M, Boyd K, Sheikh A. 2005. Illness trajectories and palliative care. BMJ2005;330:1007-11. Time Function 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%)]
- 5. 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).
- 6. 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.
- 8. • 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
- 9. 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
- 10. 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
- 11. 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
- 12. 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
- 13. 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
- 14. 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
- 15. 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
- 16. 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
- 17. 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
- 18. 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.
- 19. Thank you for listening! For further information please contact em535@medschl.cam.ac.uk
Notas del editor
- Background to presentation: Each year in England and Wales, around half a million people die. This figure has been estimated to increase by 17% by the year 2030 (Gomes & Higginson, 2008) – in this aging and growing population, there is going to be an increasing need for well planned and high quality end-of-life-care provision. End-of-life care has been set out as a national priority since the publication of the EOLC strategy in 2008, with an emphasis on high quality care and support of patient preferences.
- The term palliative care is used to describe care given without a curative basis – best supportive care. This can be applied to any disease group, however largely evokes the idea of cancer patients. Cancer patients only account for 1/4 of deaths each year. This is particularly pertinent when looking at the background of the EOLC strategy etc. This was born out of the labour government’s 2005 election manifesto that investment into palliative care services would be doubled so as to give cancer patients greater choice. National guidelines from NICE, however, impress the importance of delivering good quality end-of-life care for all patients regardless of condition.
- This graph illustrates the disease trajectories of three main diagnostic groups at the end of life. As we can see, cancer patients tend to have a long period where their functioning is still high, before a dramatic deterioration leading to death. As mention, around 25% of deaths per year are due to cancer. Organ failure, on the other hand, sees a gradual decline, punctuated by exacerbations of the condition. After each exacerbation, functioning will improve, although generally not to the previous level. Organ failure contributes to around 30% of deaths annually. Physical and cognitive frailty, finally, sees a very slow, fluctuating decline over a long period prior to death. These cases account for around 35% of deaths per year.
- Improvement in use of PCRs – in 2011 only 29% of patients on PCRs were non-cancer, whereas in 2012 increased to 39% HOWEVER, most recent VOICES survey indicates that patients with cancer diagnoses receive better quality care than those with non-malignant diseases. VOICES – “Views of Informal Carers – Evaluation of Services” – collects information of the views of bereaved people on quality of care provided to a friend or relative in the last 3 months of life. These data are based on subjective feedback received by the registrants of death – I would argue that this subjective experience is the most important.
- The data presented today are taken from data collected for the Community Care Pathways at the End of Life, or CAPE Study. CAPE is a 4-phase, multi-method study, collecting both qualitative and quantitative data to assess whether the focus on place of death is helpful when assessing how “good” a death is, and the quality of end-of-life are.
- This slide outlines the methodology of the CAPE study. The first phase involves extracting data from the medical records of recently deceased patients, and completion of questionnaires by the main GP and District Nurse involved in their care. The second phase involves 10 of the 20 recruited practices, and involves conducting a focus group to discuss the care of a subset of these patients. Focus groups will typically involve GPs and district nurses attached to the given surgery, however may also involve practice nurses, Macmillan nurses, or care home staff. Phase 3 takes a smaller subset of patients from the remaining 10 practices. An informal, family carer is identified and interviewed for each of these patients, after which the GP and DN are also interviewed. The final phase is not currently active, but will involve using the existing data to inform future practice, with a toolkit to assist in the planning of future care.
- This presentation will focus on the data collected in phase 2 and 3 of this study. The aim was use extracts from focus groups and individual interviews to explore the views of carers and healthcare professionals on end-of-life care provision. Data collection is on-going – all case discussion groups have been completed, 10 carer interviews, 4 DN and 4 GP, with further scheduled.
- It was common among the non-cancer patients to feel that care would have been very different had the patient had cancer – and that it may indeed have been more timely or of a higher quality – whereas this was not the case the other way round.
- Although reports on the quality of care varied within cancer and non-cancer disease groups, for cancer patients additional services such as Macmillan and Marie Curie were largely expected and introduced quickly by the GP or hospital.
- In contrast to the care planning that occurred for cancer patients, access to additional services was often felt to be down to luck for non-cancer patients, or patient/carer-driven. Carers did not feel that they had enough information about various services, or were confident in accessing them. Furthermore, they were unsure that services were appropriate for the care of people with much longer-term conditions.
- Carers of patients with both cancer and non-cancer diagnoses used terminology such as “palliative” and “terminal” to describe stages of their loved one’s illness. This was not, however, always the case for clinicians, who did not seem as comfortable using these terms for non-cancer patients. In this example, the assumption was immediately made that the woman’s husband must have a cancer diagnosis to be referred to as “palliative”.
- GP attitudes particularly varied regarding which diagnoses would be considered palliative, and whether non-cancer patients could be included within this category. Evidently this has implications – e.g. whether patients are included on PCR and therefore the frequency of follow-up, discussion, care planning, etc.
- Clinicians were largely in agreement that end-of-life planning was much more difficult for non-cancer patients due to the more complicated trajectories, making it more difficult to engage patients in these conversations.
- This extract illustrates a reluctance that was often expressed to discuss prognosis or end-of-life care planning with patients without a helpful “label”. This was in stark contrast to some carers who felt they had been seeking these discussion but had been unable to engage their GP in such dialogues, as in the following extract.
- Here the acknowledgment that he was approaching the end of life was often taken to be symptomatic instead of a depressed mood, or suicidal ideation.
- The view of palliative or end-of-life care is fundamentally different for non-cancer patients and cancer patients – something expressed by both clinicians and family members, but in quite different ways. Carers of those with non-cancer diagnoses feel at a disadvantage compared to their malignant counterparts. In this study we consider carer voices as a proxy for the patient – can argue that this is the feeling for patient groups as well. GPs have less confidence in approaching end-of-life issues with non-cancer patients, due to a more ambiguous diagnosis, prognosis and trajectory, and without having a helpful “label” to signpost the end of life.
- This can have grave implications – particularly in excluding non-cancer patients from entering into a dialogue and planning their end-of-life care. Evidently, this is more than simply a medical issue while palliative care is often thought to relate to cancer alone. If the priority is for greater choice and high quality care for all patients, regardless of diagnosis, more needs to be done to facilitate this.