We have relaunched our website with a better structure and much new material.
I hope that you will subscribe to the new website and comment on the papers that are there.
We have relaunched our website with a better structure and much new material.
I hope that you will subscribe to the new website and comment on the papers that are there.
Richard Smith reviewed this important book for Medical Humanities in 2016, and the review is posted here because it’s an important part of the inspiration behind the Lancet Commission on the Value of Death. The review was originally posted at:https://blogs.bmj.com/medical-humanities/2016/06/28/book-review-the-way-we-die-now/
Perhaps the first and most important thing to say about this book is that it’s a joy to read. I started it on a flight from Dhaka to Mexico City when I was exhausted, but quickly I was deeply engaged and read it for the last two hours of the flight. When I was eating alone I chose it rather than my E M Forster novel. “But isn’t it depressing?” asked a friend. “Not at all,” I answered, “it’s a joy.” Most books a medical journal sends you to review may be packed with wisdom, but they are a labour not a joy to read. (I might add, as a committed Kindle reader, that the book is also physically beautiful, even including a ribbon as a bookmark, a splendidly old fashioned delight.)
Seamus O’Mahony has written the book using his own extensive experience of people dying in acute hospitals and the experiences of friends and family, but the best parts of the book may be his critical accounts of thinkers—like Phillipe Ariès and Ivan Illich—who have gone before and his witty analysis of the deaths of various celebrities, including Susan Sontag and Christopher Hitchens, both sceptics who fought death beyond what was sensible.
I hope that when I die that I have a doctor like O’Mahony to look after me, a doctor who is deeply conscious of the many failings of medicine and his own fragility. He tries all he can to avoid The Lie, giving the false impression that a dying person is not dying, and he calls together patient, relatives, and nurses to have the Difficult Conversation, the discussion when he tells patients that they are going to die. “It is much easier,” he writes, “in the middle of a busy clinic, to order another scan than to have the Difficult Conversation.” And “The entire modern hospital system conspires against those doctors willing to have this dialogue: the relatives, the chaos and noise of the environment, the techno-juggernaut of modern hospital care, the customer-friendly doctors who are happy and willing to dole out false delusional hope, and sometimes the patients themselves, who may not want to hear what the doctor has to say.”
The last clinical medicine I did was in an oncology ward in New Zealand, and I was left feeling that I’d completely misunderstood my medical education. I thought (and this was 1978) that patients with metastatic cancer, most of those in the ward, were close to death. But nobody mentioned death. The patients were all making plans for the future, the doctors were irrepressibly optimistic. O’Mahony “confesses” that he is an oncology, “schmoncology” “apostate” and quotes the Lancet Commission that “cancer treatment is becoming a culture of excess.” (The use of religious words is important because O’Mahony, brought up as a Catholic, agrees with Illich that modern medicine is becoming a global religion.)
The core of O’Mahony’s argument is that death is a bloody business and always will be. It is, as Henry James calls it, “the distinguished thing” that cannot be tamed or controlled, and the concept of a “good death” is a fantasy dreamt up by palliative care physicians, who offer deluxe dying to the few. Most people die in acute hospitals, which have become “a dustbin for all sorts of societal problems, not just dying” and are places of “filth, torture and death, a sort of antechamber to the tomb.” Dying well in such places is virtually impossible, and anyway “The needs of patients seem to come a poor second to those of the staff and the institution….much of modern medicine is characterized by a culture of excess and dishonesty, and this culture ill serves the dying.” People are poorly prepared for dying, and even the fashionable idea (of which I’m a victim) that “To philosophise is to learn how to die” is so much nonsense. None of us know how we will react when we learn we are close to death, rendering advanced directives absurd. And the move to assisted dying is a vain attempt to strip death of its “awesome grandeur.” Doctors, he complains, are “the whipping boys for our inadequate understanding of how we die.”
E M Forster would seem largely to agree with O’Mahony: on the day that I read The Way We Die Now I also read this in Howard’s End: “Sane sound Englishmen building up empires, levelling all the world into what they call common sense. But mention Death to them and they’re offended, because Death’s really Imperial, and He cries out against them for ever. Death destroys a man: the idea of Death saves him. Behind the coffins and the skeletons that stay on the vulgar mind lies something so immense that all that is great in us responds to it. Men of the world may recoil from the charnel house that they will one day enter, but Love knows better. Death is his foe, but his peer, and in their age-long struggle the thews of Love have been strengthened, and his vision cleared, until there is no one who can stand against him.” [If like me you didn’t know the meaning of “thews” it’s “the muscles and tendons perceived as generating strength.”
Wisely, O’Mahony doesn’t venture into love, but I think he’d be sceptical of the poetic notion that love can conquer death.
O’Mahony is a “doctor’s doctor” insofar as he resent the intrusion into the doctors’ space of lawyers, politicians, managers, evidence based medicine, guidelines, personalised medicine, narrative medicine (“which provokes mockery and contempt for its smugness”), shared decision making, informed consent (“a legalistic fantasy”) and worthy but empty platitudes from royal colleges, medical schools, medical journals, and the like. He believes, for example, that there is no good way to break bad news, although he concedes that there are bad ways, which does mean that there are better, if not good, ways. Medicine has, he believes, become a service industry rather than a profession. He seems as well to be in constant battle with patients’ relatives insisting that every last thing be done for their dying relatives—but he recognises that this folly comes not simply from families but from medicine and doctors having helped create unrealistic aspirations. He quotes Kieran Sweeney, a doctor who wrote about being diagnosed with mesothelioma: “When is enough enough? This will be the defining question for the next generation of practitioners.”
He raises but does not explore what medicine is for, writing “I obstinately cling to the notion that a doctor’s role is limited: our job should be the treatment of illness.” Are doctors not to be about promoting health and preventing disease? And what about relieving suffering? Some argue that that is the true role of the doctor, recognising that suffering and illness are not the same thing. Taking O’Mahony’s notion literally would imply, which he surely didn’t intend, that once the doctor could no longer treat the illness (not the patient, note) he would hand over the dying person to somebody else. In fact, he believes, as I do, that caring for the dying patient is the job of all doctors not just palliative care physicians. Perhaps he can explore what medicine is for in his next book.
“The default setting of modern medicine is full intervention,” writes O’Mahony, “unless you are instructed otherwise.” This might be the starting sentence for a chapter arguing in favour of advanced directives and assisted dying, but in fact he’s strongly against both. His argument against advanced directives is simply that we cannot know how we will feel about dying until we arrive at the day when we know it’s close, so an advanced directive is meaningless. I have an advanced directive which I’ve emailed to my wife and children, and like most doctors I think at this stage that I don’t want anything heroic. I doubt that I’ll have the courage to forego all treatment like Ivan Illich, but I find the prospect of morphine and whiskey much more attractive than chemotherapy. I accept that I may think differently when the day comes, and if I’m conscious and in my right mind then the advanced directive won’t be needed. If, however, I have, say, a stroke, then I may well not be conscious. In those circumstances it is what I think now that is relevant—even if I would have thought differently if conscious.
His argument against assisted dying seems to be an objection to control. He does not rehearse the arguments for and against assisted dying but rather objects on almost poetic or religious grounds. It is an affront to “the distinguished thing” to try and control it, and people are behaving like God in trying to control death. He writes almost cruelly about Marie Fleming, an Irish “right to die” campaigner who took her case to the Supreme Court and became “something of a national heroine.” She had, he writes “an obsession with control” and her time in court “gave her ‘the voice she always craved.’” Had she succeeded in her case then “she would have altered forever the way in which I practice my profession.” O’Mahony may retire before it happens, but it seems to me that assisted dying is going to become routine eventually just as abortion has. We can trace its steady appearance around the world, including most recently in Canada.
I’m not sure why O’Mahony should object so strongly to control. I imagine that he is in control of most of his life–and very glad that he is. He was presumably in control of getting married, choosing his profession, and determining how he would spend his spare time and energy. The problem seems to be with trying to control death—partly because it never can be controlled. We will all die—and thank goodness that we will—and we can’t control that, although many are trying. But we can potentially control how we die. O’Mahony does not write about suicide, but presumably he accepts its legality. He’s no doubt read Hume’s famous essay making the case for suicide. There are several arguments against assisted dying, but I don’t accept O’Mahony’s argument that trying to control death is unacceptable.
O’Mahony writes approvingly of “tame death,” a termed coined by the French historian Phillippe Ariès. In pre-industrial Europe tame death was characterised by “indifference, resignation, familiarity, and lack of privacy.” None of those—except perhaps resignation—are likely to return, and O’Mahony thinks that we are unlikely to be able to fashion a secular version of tame death—because “death is tamed by ritual.”
But is he right to be so sceptical? He’s surely right that death in an acute hospital is unlikely ever to be anything but mostly bad. But does death have to happen in hospital? And does death have to belong to doctors caught up in what he calls “the madness…[of] much of modern medicine”? O’Mahony advises that “A wise person needs to acquire and treasure an amicus mortis, one who tells you the bitter truth and stays with you to the bitter end.” That amicus mortis could be a doctor, but it need not be—and even if is the doctor does not have to be in the hospital. We are seeing the emergence of doulas for the dying, lay people and a modern version of amicus mortis.
It’s a pity that O’Mahony does not write about the social movements—like Dying Matters in England and Good Life, Good Death, Good Grief in Scotland or the community programme in Kerala, India—that are trying to bring death back into life and demedicalise it. Perhaps he would be scornful, but, as his book convincingly shows, doctors have made a mess of death—perhaps lay people, assisted by doctors, can do better.
This blog, which has evoked much interest. Is co-authored by Ros Taylor, one of the members of the Commission. It was posted first on the website of the British Geriatrics Society. https://www.bgs.org.uk/blog/are-care-homes-the-hospices-of-the-future
Dr Sarah Russell is a Carer and Nurse and tweets @learnhospice, George Coxon is a Care Home Owner and tweets @CoxonGeorge and Dr Ros Taylor MBE is Palliative Care Physician and Care Home trustee and tweets @hospicedoctor
Palliative care is relevant across the illness trajectory for people living and dying with chronic progressive conditions, aiming to improve quality of life and enable a peaceful death. With an ageing population, an increased proportion of older people will need to access care and support in a long term care facility. Indeed, over the next 25 years, care homes will become the most common place of death. Hospice care aims to affirm life and death, however they are now considering new ways to reach more people beyond the walls of their buildings.
If living and dying well is a priority for our ageing population, then palliative care and geriatric practice have much to offer each other. Indeed, discussions at the recent British Geriatrics Society Spring meeting reflect this discourse. In the past, Balfour Mount also commented: “both make the whole person and his or her family the focus of care, while seeking to enhance quality of life and maintain the dignity and autonomy of the individual”. A recent review concluded that Integrated Geriatric Care or Palliative Care were effective in improving end of life for older people. Both included person-centred care, education, and a multi-professional workforce.
As a family carer in a nursing home, Sarah Russell reflects: “the palliative and geriatric care approaches are incredibly supportive when living with co-morbidities, ageing, dementia, frailty and end of life”. A recent study reported that care homes were one of the most common preferred place of death for people with dementia, especially those with reduced function. This is particularly important given the increase in the projected number of people dying from dementia by 2040. Comprehensive Geriatric Assessment, with its concentration on frail older people with complex problems, seems relevant because care homes offer continuity of care over time, knowledge of the person and time spent preparing the person for a good death.
There are challenges at the palliative and geriatric care interface. Hockley (2017) cautions to be alert to the subtle differences so that we do not impose a model of palliative care developed for cancer onto the care of frail older people. Moore et al (2019) points out the difficulty of delivering palliative care for short-stay residents while simultaneously providing a residential home for long-stay residents. There is also the dilemma of [palliative] terminology used differently in different professional backgrounds. Whilst finding a consensus is challenging, consistency about the words and definitions used do matter as they have an impact for individuals, service providers, commissioners and evaluators in terms of care design, delivery, evaluation and experience.
It is time to actively support care homes as the first-choice places of living, caring and dying. Ros Taylor points out “as a palliative doctor and a trustee of a large care home in south London, I am seeing great preparations for better endings, brave conversations and plans, alongside a real focus on living life to the full’.
But there is pressure for healthcare support in UK care homes, with a potential for a blame culture which can test one system’s trust in another. George Coxon (ambassador for John’s Campaign in care homes and a founding member of the provider-led coalition Devon Care Kite Mark), reminds us that choice, dignity, and round the clock care are reliant on strong partnerships: “these partnerships must start with those we have with our residents, their families and loved ones and also prioritise our NHS health partners and specialist palliative care services working in a trusting and trusted way”. Indeed, it has been suggested that improved outcomes are achieved in an environment where visiting practitioners and care home staff had a sense of common purpose and confidence in each other’s skills, together with recognition from health and social care organisations that care homes are valued partners.
Chronic phases of illness and increasing multimorbidity present growing challenges requiring a new approach to care homes e.g. a wrap-around infrastructure characterised by a network of health and social care teams offering relational support and expertise. Whilst there is evidence that there can be a lack of palliative care knowledge in care homes, initiatives such as the Proactive Health Care of Older People in Care Homes (PEACH) study illustrate real world research experiences of collaborative improvement. Further examples, including Enhanced Health in Care Homes , ENRICH and Teaching Care Homes, demonstrate their potential as innovation centres showcasing excellence in care and promoting research and quality improvement programmes.
In a time of economic, political, cultural, health and social uncertainty, there is more to unite than divide in hospice, palliative and geriatric care. If healthy ageing in the last years of life is concerned with the duality of living the best life possible, whilst at the same time adapting successfully to gradual deterioration; then now is the time to focus on integrating services in care homes.
Perhaps the question is not ‘are care homes the hospices of the future’, but rather “what are we doing to support and enable care homes as the hospices of the future”?
Tracey Bleakly is a member of the Lancet Commission on the Value of Death and chief executive of Hospice UK. In the blog below she shows what good work hospices are doing but argues that they need revolution not simply evolution to meet the growing demand for end of life care.
And her is a video of Tracey giving a keynote address at the annual conference of hospices.
In the year that Cicely Saunders would have turned 100, the 51st year of the modern hospice movement, and a year where so many hospices celebrated significant birthdays, it feels appropriate to stop for a second and look at where we are and what we have achieved. In the last year, hospices have helped an incredible 208,000 people, supported 49,000 families with bereavement support and cared for 83% of their patients in the community – in their own homes or care homes, where they wish to be.
Our HOLISTIC study which will launch in the spring has found so many examples of hospice and hospital partnerships, improving care and support, joining up services, and helping people achieve the end of life care that they want for themselves and their families. We are continuing to support more people with non-cancer conditions including heart failure, COPD and neurological conditions, and huge efforts have been made to understand how we can develop services for the homeless, people in prisons and travellers.
Everyone involved in hospice and palliative care has one thing in common – they never stop learning and adapting their knowledge to help people. To the 40,000 hospice staff, the 125,000 hospice volunteers, and everyone involved in palliative care, from GP’s to OT’s, hospital staff, district and community nurses, carers, families and friends – you are all incredible and a huge credit to society.
With every institution (and after 50 years the hospice movement is an institution), there are three options for the future. Preservation, evolution and revolution. The first – preservation feels safe, feels responsible. Our communities rely on our hospices, on the buildings, the teams and the services they provide. It’s so important to make sure they are there for future generations. So we try to keep everything the same, not take too many risks, live within our means, cut our cloth a bit more each year and keep the hospice, the amazing community asset safe. But doing what we have always done isn’t the no-change option.
Change is happening around us. Death and dying is dramatically different today than even ten years ago. People are dying over much longer periods, they have multiple conditions with different symptoms, their needs are changing, the numbers are rising. Death is on the increase thanks to population growth (up by 32,000 people a year since 2014), and the need for palliative care is set to increase by 25% by 2040.
.Hospices are no longer individual charities helping a small number of people in the community die well. They are part of integrated healthcare systems, responsible for population based care, and that means everyone who needs palliative care in our communities, whether we help them directly or though partnerships and education. The brutal truth is that preservation means atrophy, irrelevance and decline. This is no longer an option.
This leaves us with evolution and revolution. Evolution is where I would argue most hospices are at today. Most hospices are unrecognisable from even five years ago. Sure – the buildings are still there, but step inside and meet the teams, the services, look at day-care and wellbeing, hospice at home, the patients in the inpatient units – there has been dramatic change. This has allowed us to care for many more conditions, to help people in their own homes and care homes, to get to people earlier to promote independence and quality of life. The innovation and energy I see when I visit hospices up and down the country is incredible and unrelenting.
And yet the dial isn’t moving. We started collecting overall statistics for the hospice movement three years ago. We helped 206,000 people in 2016, 212,000 people in 2017 and 208,000 people in 2018. Our funding is rising slowly, now at more than £1.43Bn. And yet, the number of people we are not reaching who need our help is increasing (to 118,000 people last year), and that doesn’t include the 150,000 people who die of frailty in our hospitals every year. So what’s going on?
In short, hospices are running to stand still because costs are rising far more quickly than income and there is continual pressure on all sources of funding. Whilst hospice turnover increased again this year by £38M to £1.43Bn, this is the seventh year that two-thirds of hospices told us their NHS funding had been cut or frozen. NHS funding is being targeted in new areas such as rapid response, 24×7 services and joint posts at 30% of cost, with hospices struggling to find the balance and fund services that were previously covered by NHS contracts.
In 2017, 45% of hospices running deficit budgets and this is estimated to have risen to 65% in the current financial year. Legacies were down by 9% last year and whilst hospice trading profit remained stable at an average of 24%, we know that conditions on the high street are tough.
Overall hospice costs have increased by 4.4% this year with staff costs rising by 5%. When we consider that our 40,000 hospice staff represent 68% of hospice turnover and that this was before the NHS pay-rises agreed for the next three years (which the government will not match for hospices), it is clear that it isn’t likely to get easier.
In this context, the ingenuity of hospice staff and volunteers in continuing to provide high quality services to so many people is incredible and should be celebrated. It will take continuing evolution for the hospice movement to thrive, and events like the Hospice UK conference are crucial in sharing ideas and new practice.
But we can’t help the rising numbers of people who need us through evolution alone, and this is where revolution comes in. During the 2018 Hospice UK roadshows we used anonymised data from our PopNat tool to set Hospice leaders a challenge. If a standard UK city had no palliative or hospice care to-date, what would we design today and how would we deliver it? Interestingly no-one designed a hospice as we would recognise it today. Everyone was planning community services and partnerships, hubs in highly populated areas of need, use of existing buildings, such as community centres, and where specialist services were needed, beds were shared with existing hospitals and care homes.
It proved the point that knowing what we need for people today (and to an extent in the future) isn’t the hard bit. We can predict how our over 65 and 85 year old populations will rise over five years, and the prognoses for children with life limiting conditions. We know the trends on conditions that people are dying from, we know how many people are living alone, where they are living, how communities are changing. We know there is likely to be continual pressure on funding, we have the NHS ten-year plan, open funding commitments and a 2012 health and social care act that is unlikely to be changed in the coming years.
It isn’t the blue-print that’s hard to define, its how we get there. The reason that change in the hospice sector has been largely evolutionary is that we know we have a contract with the public who give us an incredible £1Bn a year for our existing services for the people they love and for the hospice buildings they paid for, and we still have so much need for the help we currently provide.
How then can we change without taking huge risks, shutting units, closing services, re-routing money. It’s hard to justify and even harder to do. So whilst radical change across the sector is one way of meeting need, it’s not going to happen. We need to accept and promote the legitimacy of marginal change so we don’t destabilise the sector we have all worked so hard to develop. Radical change being ‘decoupled’, being connected but on the outside will be far more comfortable for those who want to engage to do so.
So that’s what we’re going to do – we’re going to de-couple revolution. It needs to happen in parallel with evolution. We need to empower and support some hospice and palliative care leaders to explore new territories, look at joint ventures, new partnerships, radical new ways of funding and delivering services and at the same time, evolving what they already have. Many hospices won’t have the time to get involved. Their need for evolution is all consuming and will take all the time and energy they have. This is completely legitimate and necessary, and will still form the majority of Hospice UK’s work and support.
There will only be small numbers taking up the revolution challenge at first. Many of the new ventures will fail, it’s important that they do otherwise we won’t be taking enough risks and we won’t be able to learn. But the ones who succeed will bring back new ideas and ways of working that will help the rest of the hospice movement evolve at pace, unlock new sources of funding and grow.
Evolution and revolution will be our watch-words from this point forward and you’ll see these themes develop through 2019 and beyond. If you want to be more involved please get in touch, there will be plenty of opportunity. If you are already revolutionising in your own region, please do let us know – we’d love to know more. It’s going to be hard work, but it’s also an incredible opportunity to shape the future. The world is advancing, need and demand is growing. The way we live and the way we die will continue to change. I’m convinced that hospices will become ever more relevant and will help to shape the way society supports people in the last phase of life in the future.
I feel privileged to be involved and could not be more proud of every single person in the sector I represent
What is the future for hospices? They can be sarcastically described as offering “de luxe dying for the few looked after by dowager duchesses,” but they undoubtedly provide services that the dying and their families greatly appreciate. But only a minority of people die in hospices.
I’ve collected here three pieces on hospices that stick in my mind. One is my rather long and dull account of visiting my local hospice: it explains the mechanics and finances of a hospice.
A short, provocative piece by Colin Douglas (actually Colin Currie), a geriatrician, critical of hospices is below. (I fear that it may not be easy to read, so below the picture is a link to the BMJ article, which can be accessed only by those with a subscription. If you can’t read it and can’t access the BMJ email me at firstname.lastname@example.org I’ll send you a PDF.)
And below Liam Farrell, a GP and writer, describes the startling contrast between hospices and care homes:
BMJ 1996; 312 doi: https://doi.org/10.1136/bmj.312.7047.1677 (Published 29 June 1996)Cite this as: BMJ 1996;312:1677
Last year, on a hospice locum, I made a point of visiting the day room as often as I could. It was a source of wonder; whenever I looked in it would be humming with activity. In one corner, a sing-song would be in session, with a volunteer accompanying on piano; in another corner, set up as a little coffee shop, there were animated discussions going on at every table. Outside, the minibus, driven by another volunteer, was drawing up, and some residents burst in the door full of news about their guided trip around the Botanic Gardens. It was a place where death was not considered an enemy.
The locum post included home visits, and during one of these I attended a patient in a nursing home for the elderly. After the consultation, on the way out, I passed the day room. It was huge, gloomy, and cavernous. The floor was covered with a grubby stained carpet, and the curtains were partly drawn even though it was a dull cloudy day and dark enough outside. A television was blaring; a children’s cartoon was on. The old people were lined against the wall; some were rambling and whispering to themselves, others were dribbling, most were just staring into space. An old man sitting near the door pawed at me, and I recoiled involuntarily and fled. There was just too much grief, too much misery to cope with; it was a place where death would have been a real friend. As with the Struldbruggs in Gulliver’s Travels, there can be no fear of death when we see the real horrors of eternal life.
I’m not being specifically critical; I’m sure similar scenes are replayed regularly throughout the NHS. But why? Why is there such a gulf in the level of care? Both sets of patients are dying and both are surely equally deserving.
There are, however, some significant differences. The people in one group are younger and are able to communicate their symptoms better, and their care remains largely voluntary; there is no commercial imperative.
But perhaps the crucial difference is that one group has more predictable and shorter prognoses. If a patient with senile dementia is in severe chronic pain, are any of us going to have the time to visit them regularly during the day and follow them up regularly during the following weeks and years? For every patient dying with cancer, a general practitioner will have three or four dying with one of the degenerative diseases of the elderly.
Patients with cancer are different and, dare I say it, easier to look after; it’s like getting on a train a few stops from the station. We know that, however onerous the commitment, it won’t last for ever. So lots of other passengers jump aboard: distant relatives, neighbours, specialist nurses, hospice doctors, social workers, chaplains. And when the train pulls into the station—bang!—we all jump off in a huge blast of endorphins. Do-gooders? As John Wayne said, “We’re doing good for ourselves.”—LIAM FARRELL, general practitioner, Crossmaglen, County Armagh
It is important that our report contains new evidence not just analysis of existing evidence.
We have limited resources for research, but we should try to identify questions that we might be able to answer in the time available by systematic review, surveys, or collection of new data.
Perhaps too we might develop new hypotheses that could be tested later, perhaps by others.
Here are some preliminary questions. There are many more to come.
Please suggest other research questions.
These thoughts come M R Rajagopal (known to all as Raj), who is a member of the Commission, a palliative care physician, and the founder chairman of Pallium India, a palliative care non-governmental organisation based in Kerala.
About dying well
One significant negative influence of the high-tech over-medicalisation of death by today’s health care industry is that it changes public perception also. Today, atleast in cities and among the affluent, death in an intensive care unit (ICU) is seen as the norm. It is as if almost everyone feels, yes, that is the way it should be. This suits the health care industry. As health care is privatised in much of the developed as well as developing world, the out-of-pocket expenditure to the family is enormous. A recent frightening statistic from India shows that in one year, 55 million people are pushed below poverty line by out-of-pocket catastrophic health expenditure.
Death in the ICU suits health care professionals also because, with the rapidly changing dynamics during the dying process, the families would be worried and may pester the nurses and doctors with complaints on behalf of the patient. By isolating the person in an ICU, we are completly preventing such complaints from families.
The consequence is that when the person needs a human touch most, that is denied to the person. That human touch and care by relatives is replaced by treatment in an ICU at an enormous cost to the person and the family, both in terms of suffering and money.
Despite such public acceptance of high-tech death as the norm, there is substantial discontent with this way of doing things in a growing section of the society. Many lone voices have been heard, but as they were disorganised, most had very little impact.
For the people who feel the injustice of it, the obvious way in which they can protect themselves and their loved ones from such misery is by preparing advance medical directives (AMDs). This is a paradox because for all practical purposes, people are preparing legally valid documents to protect themselves against a perceived onslaught by the medical profession. Clearly, if the medical profession were giving ethically appropriate end-of-life care, such an advance directive would not be necessary!
But things seem to be changing. A consequence of today’s unethical, inappropriate, inhumane end of life care practice is a growing number of activists who are trying to create legal solutionx for end of life issues. But legal solutions tend to be rigid and complicated and often add on to the problem as happened in 2018 in Inda. By a verdict in March 2018 on a public interest litigation by a non-government organization by name “Common Causes”, the Supreme court accepted that the individual had a right over his own life and that advance medical directives (AMD) need to be respected. Nevertheless, fearing abuse of such a provision, the court put in the following safeguards:
The AMD must be countersigned by a judicial magistrate of the first class.
Before deciding to act on the AMD in terms of withdrawal of life support, the following steps are to be taken.
A three-member board of specified specialist doctors must recommend acting on the AMD.
Their decision is conveyed to the district collector (the chief of executive of the district).
The district collector appoints another three-member board of specialist doctors who recommend acting on the AMD.
This matter is conveyed to the judicial first class magistrate who personally visits the patient.
The judicial first class magistrate passes an order permitting acting on the AMD.
The above process is so complicated that in the 10 months following the verdict, there is no known instance of a withdrawal of artificial life support following this procedure.
As the above shows, unless the ethical course of action is widely discussed and accepted by professionals and the public, laws cannot work to the people’s advantage. As Isi Breen writes:
“Yes. Crossing the border without documentation is illegal. Being black without a white owner was illegal. Walking into a whites only restaurant was illegal. In Germany, being a Jewish person was illegal. Without ethics, laws are just the stories we tell to justify horror.”
Medical science seems to have grown into a monster successful at defeating the very purpose of the medical profession, ‘to cure sometimes, to relieve often and to comfort always.’ Instead it has turned out, in a large percentage of clinical circumstances to inflict suffering particularly towards the end of life.
The only reasonable solution seems to be generating public discussions about death. Surely, we should be discussing about humane end of life care way more than we discuss euthanasia? We should be discussing access to palliative care which would look after not only the physical needs, but also the emotional, social and spiritual needs of the patient and the family. If we facilitate it, the phase of dying could even be a rich experience during which past grievences and quarrels can be washed away with forgiveness and love. And then perhaps the person could face the inevitable end with some peace of mind and a sense of fulfilment. And then, the family could live with the memories of their loved ones, atleast with some little pleasure thinking of the good times they have spent together and the love and care that they have shared between them.
In “The Tibetan Book of Living and Dying”, Sogyal Rimpoche writes, ”One of the things I hope for from this book is that doctors all over the world will take extremely seriously the need to allow the dying person to die in silence and serenity. I want to appeal to the goodwill of the medical profession and hope to inspire it to find ways to make the very difficult transition of death as easy, painless, and peaceful as possible. Peaceful death is really an essential human right, more essential perhaps than even the right to vote or the right to justice; it is a right on which, all religious traditions tell us, a great deal depends for the well-being and spiritual future of the dying person. There is no greater gift of charity you can give than helping a person to die well”.
Section 1: Introduction: Causes of “Overtreatment” from both the individual and societal level.
My sense is that each section of the Commission will have to present a working definition for what they see as ‘overtreatment’. Defining and then quantifying overtreatment will be the major focus of the Economics Component. Although there are likely many definitions of what constitutes overtreatment, from an economics perspective it is defined as treatment where the marginal costs exceed the marginal benefits. Due to generous insurance coverage, healthcare is rife with overtreatment (termed dead weight loss by economists) and many economists have made careers out of measuring the extent of it. The most famous study is the RAND Health Insurance Experiment in the US from the late 1970’s which found that when consumers were required to finance their own health care, they reduced spending by about 30%, suggesting that at least 30% of healthcare would fit into the definition of overtreatment.
There are many reasons to suspect that this figure represents a lower bound. Other drivers of overtreatment include biases among patients, families and doctors that push people toward low value treatments where the costs likely exceed the benefits, and even more so for patients with life limiting conditions. Optimism bias/hope is the primary bias but there are many others. Even in the absence of bias, families push for low value treatments to maintain (often false) hope and to avoid regret and doctors do it to avoid having tough conversations with patients. Institutional factors (e.g., profit, greed) also lead some doctors and other stakeholders to push for treatments over supportive care.
Section 1 will expand on all of the above issues with a focus on likely causes of overtreatment at EOL from the individual, family, physician and societal perspective.
Section 2 Overtreatment from the Societal Perspective
Section 2a (A Stated Preference Survey with Reed Johnson, Semra Ozdemir, Juan Marcos Gonzales, Eric Finkelstein and Richard Smith as co-authors, others TBD)
As noted above, a primary cause of overtreatment at EOL is generous insurance coverage in UHC countries. However, as the level of coverage is a collective decision by government (elected by taxpayers), in theory that level of overtreatment is acceptable to constituents and preferred to a situation with less coverage and less health equity. However, this assumes that governments are appropriately executing the preferences of their constituents. That will be the focus of this section. We will address the following questions about overtreatment from the taxpayer perspective via a stated preference survey in multiple higher and lower income countries (countries TBD and based on available resources).
Note that the plan for the above is to survey taxpayers. Resources permitting it may also be of interest to survey other key stakeholders, including doctors, managers, nurses, politicians, etc although getting them to take surveys is very tough.
Section 2b (Evidence based on existing data, with Brett Doble, others TBD)
An alternative approach to quantifying overtreatment at EOL. If countries inherently value EOL care similar to how they value other types of care, then presumably this care would be approved and funded at the same incremental cost effectiveness ratio as non-EOL care (ICER). If so, then under certain assumptions, we would expect that the percentage of costs that go toward EOL care in a year should be roughly equal to the percentage of people who die. However, this is unlikely to be the case. In UK, for example, annual spending on EOL care is roughly 15% and the percent who die is below 1%. French et al do not provide mortality estimates but present statistics on % of aggregate annual expenditures that go to EOL in last year of life with estimates ranging from 8.45% (US) to 11.20% (Taiwan). Given that death rates are well below these levels, this provides strong evidence that we are spending money on EOL care for interventions with cost-effectiveness ratios many times that for non-EOL care and likely above established thresholds for cost-effectiveness. Ideally we would present these statistics for as many countries as we can find and make the point that this is true across all developed countries but unlikely to be true in developing countries (note: I am not sure how much data exists so this is something we would need to look into but the idea is to present existing data in an interesting and new way to highlight money is not being well spent). We would supplement this data with other economic markers suggesting low value of EOL care based on what is available in the literature.
Note that one caveat to the above recently pointed out by Einav et al is that these determinations are made ex post. Ex ante some deaths were meant to be prevented not just prolonged. Our focus is on those treatments where the goal is only to moderately extend life and/ or improve quality of life but not meant to be curative. However, it is unlikely that we can identify what percentage of deaths falls into this category although it is likely to be the majority for those who die of cancers and other chronic diseases
Section 3: Summary and Recommendations
Recommendations for reducing overtreatment at the individual and societal level will come from what we find above, Felicia’s earlier Commission work, and work from the other parts of this Commission.
The dying spend less than 5% of their time with doctors and nurses, and 95% doing something else, perhaps alone, with family and friends, walking the dog, making love, reading poetry, or watching the television. “Dying is not hard,” said Alan Kellehear, 50th Anniversary Professor, End of Life Care, University of Bradford in London this week; it’s what happens on the journey to death, which may last years, that can be hard: anxiety, depression, fear, loneliness, social isolation, stigma, looking into the abyss, and suicide. Yet palliative care concerns itself primarily with the 5% not the 95%.
And the grief that starts before a death and continues after death lasts not for weeks, months, or years but forever. “What are our forever strategies?” asked Kellehear. “Grief,” he continued, “is the least understood area of palliative care,” and probably much more pervasive than we realise and an important ingredient of many social problems–from gang stabbings through alcoholism and loneliness to suicide.
The action with the dying and the grieving is not in hospitals, hospices, or primary care clinics but in homes, workplaces, schools, golf clubs, Parliament, and the community–which is why a public health strategy is needed. Yet palliative care, said Kellehear, is the only medical specialty that has paid no attention to prevention, harm reduction, or early intervention. It has concentrated only on the final phase of dying.
The rudiments of public health
Joking that he could save members of the audience £9000, the cost of masters degree in public health, Kellehear ran though the methods of public health before describing how they are now being used in relation to death and dying.
Public education is one of the methods of public health, but like everything in public health it has a political component. Kellehear described how when he lived in Australia messages about using a condom were everywhere when there were only 45 deaths a year from HIV/AIDS. Yet not a single thing was done for the 100 000 a year dying and grieving.
Community development must build on the community’s needs not the paternalism of public health practitioners. It’s about doing things “with” people not “on people.” Humility is needed, and, bemoaned Kellehear, public health professionals–epidemiologists, health service researchers, and biostatisticians–are the hardest people to get on board with community development; they are reluctant to get their hands dirty. Academic incentives, which reward intervention trials rather than community development, are wrong, argued Kellehear.
Social ecology is manipulating the environment to get positive outcomes. Kellehear told the story of being asked to do something about the drunken carnage that happened every Friday night in Geelong in Australia. He and his team of researchers changed the environment with interventions like putting food on bars, either removing chairs or bolting them to the floor, insisting that gentle music alternated with headbanging music, and telling the police not to arrest people unless there was a threat to life. The result was a 70% reduction in injuries. Crucially the programme depended on having the full support of the city authorities.
Sustainability is “the final and only test” of public health programmes, said Kellehear. “If you [public health practitioners] are needed” then you are providing a service not implementing public health.
Compassionate communities and cities
Kellehear and others recognising how public health has failed to respond to death and dying have launched compassionate communities and cities that use the methods of public health. There are now as many as a thousand compassionate communities–mainly in Australia, Britain, Canada, and India. There are about 40 in Shropshire.
Every community is different, but there are, said Kellehear, two broad categories of compassionate communities: those that increase death literacy and awareness through death cafes, book clubs, poster campaigns, short story competitions, and the like; and those that create social support for those with long term illness or coping with grief and loss. Some communities combine the two. Kellehear favoured community support, saying he was “not a big fan” of programmes to raise awareness. Below are examples of activities undertaken by compassionate communities.
Compassionate Cities Charter
There are, he continued, good things about dying. He described what he learnt in his PhD where he interviewed 100 people in an oncology ward within six months of death. They made new friends, improved their relationship with their spouses, transformed the way they saw things around them (reminding me of Denis Potter in his famous interview describing how he saw ‘the whitest, frothiest, blossomest blossom that there ever could be” as he was dying), and watched more television (“Try getting that into the Lancet,” said Kellehear). People faced death with “courage not fear.” He learnt too that a third of dying people had visions of loved ones–as do a third of those grieving.
These good things, he said, need more promotion. He regretted that public health practitioners use death to scare people–“if you don’t stop smoking you’ll die….if you don’t use a condom you’ll die.”
Compassionate communities are mainly led by and hospices and palliative care, and each community goes about it differently. Problems are that coverage is non-systematic and communities “go for the easy bits.” This has led to the concept of community cities, which are led by charters. The list below gives an example of what’s in a charter, and the charter of Plymouth can be seen here: https://www.stlukes-hospice.org.uk/wp-content/uploads/2017/06/Compassionate-City-Charter.pdf
Compassionate Cities Charte
The compassionate cities programme provides a route map for communities and are an example of social ecology. Ideally they are both top down and bottom up, involving every part of the community. The result can be stronger outcomes than with community programmes.
There are compassionate city programmes in Frome (Somerset), Inverclyde (Scotland), Limerick, Londonderry, Seville, Burlington (a borough of Toronto), New Washington (a borough of Vancouver), and Calicut (India) and are beginning in Cologne, Berne, Taipei, Innsbruck, Minnesota, and Melbourne.
There have been conversations about starting a programme in London, but Kellehear thinks that with big cities programmes are most likely to be successful in individual boroughs rather than in the whole city. There are many professional organisations, including Public Health England, supporting the idea. But, warned Kellehear, “the palliative care mafia” (as he called them) may not be helpful, and local authorities are in such a sorry state that they are reluctant to take on anything new.
What’s the evidence?
What’s the evidence for these programmes, asked Kellehear. He started defensively by pointing out that medicine had been around for a thousand years without evidence of effectiveness, oncology for 30 years after the Second World War without progress, and palliative care for 30 years without evidence. You can, he said, “evaluate too early.” But public health evidence has lots of evidence stretching back a hundred years (clean water, sanitation,) to support its effectiveness. Why wouldn’t public health measures work with death and dying?
There does begin to be evidence of effectiveness, including a systematic review conducted by Kellehear and others https://www.ncbi.nlm.nih.gov/pubmed/26269324 A retrospective study of the programme in Frome has shown a progressive reduction in unplanned hospital admissions while the rest of Somerset had has increases. https://bradscholars.brad.ac.uk/handle/10454/16551 The National Institute for Health Research has issued a call for research on compassionate communities.
What is needed, said Kellehear, is “a convincing argument to reprioritise.”
Reprioritisation might have to include thinking about coordinating community programmes. Those concerned with diabetes, obesity, drug and alcohol problems, and dementia are also keen on community programmes.
One of the needs for the future is quality assurance of programmes, recognising that bad experiences will inevitably occur. Evaluation will continue to be a challenge. Programmes must be co-created and co-designed, and all that has been learnt needs to be digitised. Importantly programmes need to wean themselves off dependency on services, including the NHS. “Every mum and dad in England needs to participate.” Funding will be important, and local authorities are suffering from underfunding; but, pointed out Kellehear, this programme started 20 years ago and 80% of the work has been unfunded.
I left the meeting mightily impressed. What Kellehear describes is, I’m sure, the way to improve the experience of death, dying, and grief in Britain and beyond and to reverse the remorseless medicalisation of death.
John Dewey, the philosopher, said that a problem well defined is a problem half solved. To that end the Lancet Commission on the Value of Death is working had on defining the problem, and here are some useful thoughts from Penny Dash, a friend and McKinsey partner as well as medical doctor.
I wonder whether you could try and structure the list below. I think there are two broad points you are making so I’ve put those together – and restructured to have the problem statement (and the impact of that) and then the drivers of that problem. I’ve put the atul gawande quote in the heading.
You could also add some prioritisation in terms of what the potential impact is of addressing each one (in terms of $, quality of life, intergenerational equity, spend on other areas …….. and wider environmental impact) and the feasibility of addressing. That way you could have a 2×2 showing impact versus feasibility which could then inform further work? Red is my comments and black is the original text/list of ite
Society and medicine have an unhealthy relationship with death. “In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.” (Atul Gawande)
Combined this results in a vast amount of money spent with little benefit (health or wellbeing or economic). Death increasingly occurs in old age and from prolonged frailty, giving people a long time to experience “biographical pain” and generating large costs. The “compression of morbidity” is pursued but seems to be a myth. Overtreatment at the end of life is a major driver of heath costs and of expenditure being concentrated in hospitals, where most deaths take place; this high expenditure crowds out other programmes around education, housing, city design, environment, and the like, which do more for health than does health care. Resources are shifted to the old rather than the young, creating intergenerational unfairness and possibly conflict.
The reasons for this are multifactoral:
a)Doctors find it hard to talk to patients about death and dying and opt instead for continuing treatment.
b) Medicine has come to see death as “failure” rather than “normal”
c) Resources in medicine and medical research are concentrated on countering mortality rather than morbidity
d) Medical research implicitly (curing cancer, heart disease, dementia, neurological disorders, etc) is implicitly if not explicitly pursuing immortality
e) Societal expectation is to save lives at all cost …….
f) Families often find it difficult to talk about dying – any sense of denying treatment/curtailing treatment is seen as “killing mum/dad” or “not doing all I could to save my child”
Addressing this would have high impact but is of medium feasibility.
The reasons for this are also multifactorial but include:
a) The curative medical model is pre-eminent as a driver of health service priorities; supportive and palliative care services remain marginal, often relegated to charitable NGOs
b) Plans for developing health systems often give little or no attention to end of life care
c) resources remain tied up in hospitals (which societies, doctors, politicians value) resulting in little resources for palliative out of hospital care
d) One of the main jobs of culture/religion is to provide meaning to life and death and rituals to govern death and dying, but medicine replacing religion as the “owner” of death and dying has led to loss of meaning and rituals around death and dying. People are left with an existential crisis that medicine can’t help (Ivan Illich)
e) very little medical/nursing training goes on palliative care
Addressing this would also have an impact (though probably smaller) but would be easier to do/have greater feasibility.