Life at the end: historical reflections on palliative medicine
What does end-of-life care really mean and how has it changed in recent history? Tilli Tansey reflects.
‘Is it really history?’ is a question I’m used to being asked. I’m now a medical historian working on the history of recent biomedicine, but for many years I was a neuroscientist. When I decided to change my career, none of my lab colleagues understood why the recent past could be of any interest, although when I asked the more senior ones to tell me of their early training and careers I would be met with ‘Oh, it was all very different then!’, which illustrated my point exactly. Changes and continuities are the stuff of history, and learning of, and from, the recent past is important. This thought informed and inspired the Wellcome Witnesses to Twentieth Century Medicine volumes, a series of seminars between a range of experts, and their published transcripts.
The phrase “you’ll be history” – a sort of verbal memento mori – is one that could have subtitled our current volume, looking at Palliative Medicine in the UK c.1970–2010 (freely available to download). End-of-life care has been in the news a great deal recently, largely as a result of the controversy over the Liverpool Care Pathway for the Dying Patient, a strategy developed between the Royal Liverpool Hospital and the Marie Curie Hospice. With a recent online survey by the BMJ and Channel 4’s Dispatches finding that nine out of 10 palliative care experts would choose the Liverpool Care Pathway for themselves, the issue of how best to care for those beyond the scope of medicine to cure has never seemed more pressing. As Dr Robert Twycross pointed out during our recent Wellcome Witness seminar: “palliative medicine is a form of emergency medicine, because terminally ill patients typically haven’t got a lot of time left; we’ve got to get in there and get on with it. Tomorrow is second rate, and may be too late.”
Palliative medicine has a short history, but an important one in which Britain plays a hugely significant role. According to Dr Twycross, “Hospice palliative care was initially a protest movement against medical neglect in the post-war years when medicine began to evolve into the sort of specialty it is now. As doctors had more they could do to cure, then the dying presumably got more and more neglected”. It now seems remarkable that the formal discipline did not exist before the late 1980s and it was only as recently as 2006 that the US recognised “hospital palliative medicine” as a subspeciality. Previous to this, the phrase “continuing care” was used – chosen, according to Professor Geoffrey Hanks, “because it is meaningless”.
One of the central questions at the seminar, ably chaired by Sir Kenneth Calman, was “What is palliative medicine?” Medicine can be defined as ‘the science or practice of the diagnosis, treatment and prevention of disease’. However, when the diagnosis is terminal, and all hope of treatment and prevention are gone, what is left for medicine to do? Was this, in essence, simply the medicalisation of death?
One of the preeminent figures in creating and promoting palliative medicine, and indeed the hospice movement, was the magnificent Dame Cicely Saunders. Dame Cicely participated in a Wellcome Witness Seminar on Innovation in Pain Management in 2002, where she described her concept, first elucidated in 1964, of ‘total pain’ – the physical, the psychological, the social and the spiritual, which in turn instigated a holistic approach to care, embracing the whole person and those closest to them, not just their medical condition. This concept was embodied in St Christopher’s, the hospice she subsequently founded in 1967. The development of hospices however, did not meet with universal acclaim, as Professor Hanks was keen to stress: “There were lots of people who didn’t think that hospice was necessarily a good idea, particularly in the early days when it soon became apparent that in spite of all these developments, the number of patients being seen by hospice staff and by specialist palliative care staff, was actually very small.” Colin Douglas, an author-physician from Edinburgh, summed it up in the BMJ in 1992 – “the hospice movement is too good to be true and too small to be useful.”
Initially associated with end-of-life cancer care, palliative medicine has evolved with the times, both to reflect changing social mores, and to engage with the medical dilemmas posed by new diseases. The AIDS epidemic in the 1980s was a huge challenge to which pioneers like Professor Rob George responded with pragmatism and vigour, while staying true to Dame Cicely Saunders’ vision: “Those coming from non-cancer clearly had the same spectrum of problems as those dying with cancer, yet it was so hard – and depressingly, it still can be very hard – to get hospice engagement for patients with unfamiliar life-limiting diseases, facing complex problems and difficult social circumstances. Because I came into palliative care medicine in 1987 through starting services for people dying with HIV in central London, caring for people based on need and not diagnosis, culture, status, etc., has been a passion for me from the start.” The myth of the “white and middle class” hospices providing “deluxe dying” for a privileged minority was further debunked by Professor Dame Barbara Monroe, a social worker by training. Now Chief Executive of St Christopher’s hospice, she pointed out that “20 per cent of our patients are non-white British and more than half come from the two most deprived quintiles of the index of multiple deprivation.”
The issue of how best to treat those Professor George described in an email as “the disadvantaged dying” proved one of the most fascinating aspects of the seminar. The pioneering treatment at the Princess Alice Hospice in Surrey (where, incidentally, Wellcome Trust writer Chrissie Giles spent much of last Summer running a creative writing class – see ‘Stories from the day hospice’) stands out in this regard. Dr Andrew Hoy, Founding Medical Director of the Princess Alice, admitted to being “frankly embarrassed by the hospice movement’s stricture that actually they would only take AIDS patients who happened to have a cancer”. In those less enlightened days, before the advent of anti-retroviral drugs, and when the stigma surrounding HIV/AIDS was great, concerns over patient confidentiality and the impact on the local community were predominant. In cases where community support was crucial, this could also have an effect on the vexed issue of funding – a recurring topic in many of the Witness Seminars. At that time, 90 per cent of the funding had to come from charitable sources, and there was great concern that if an institution ceased to be predominantly a cancer hospice, funding would not be forthcoming. Professor Clive Seale recalled “considerable tension about this in the 1990s … as the public view of people with HIV/AIDs was felt by many to differ from that of people with cancer, creating something of a dilemma with hospice advocates, perhaps concerned to maintain the success of their fund-raising activities.”
The role of palliative care continues to change with the times. Dr Mary Baines was a contemporary and friend of Cicely Saunders, and is a great advocate of care at home, where much palliative medicine is now practised. She was involved in starting the first home care team in 1969, two years after St Christopher’s started, “and now there are 800+ people at home, and 48 inpatient beds. So that is by far the biggest way in which hospice now works: working with general practitioners rather than taking over their care.”
The most powerful testimony of the positive role that hospices have to play, and the image that will stay with me the longest, came from Mrs Jean Gaffin, currently a Trustee of St Luke’s Hospice, Harrow and Brent: “…it was around 1970–72; I had a neighbour who went into St Christopher’s, and I visited him. I asked his wife on the way there: ‘What’s the difference? Why is he not in [their local hospital] St Helier? Why is he in this place called St Christopher’s which is so difficult to get to?’ And she said: ‘When he went into St Christopher’s, they cut off his number tag on the wrist and said, “You’re not a number; you’re a person”’. And I’ve never forgotten that remark.”
Tilli Tansey is Professor of the History of Modern Medical Sciences at the School of History, Queen Mary University of London.
The Makers of Modern Biomedicine Project at Queen Mary University of London is supported by a Wellcome Trust Strategic Award.