A brief history of palliative medicine and its failures.

Are people listening?

Palliative medicine formed as an officially recognised specialty in 1982. It’s not the youngest medical specialty but it was certainly a late comer to the medical party. Through its initial inception and growth in the 1980’s and 1990’s it was often stated that palliative medicine was expected to succeed by becoming irrelevant because those in other specialties- oncology, geriatrics and so on would become increasingly skilled at managing all phases of life limiting illnesses. Put simply- the specialty of palliative medicine would cease to be needed as a consequence of its own success in normalising dying as part of healthcare and of life. 

What went wrong?

If we are to accept that palliative medicine has failed in its initial aim to become successfully part of all specialties and therefore no longer need to be a separate specialty then the question as to what went wrong has two parts.

The first part is to answer whether palliative medicine has grown out of its initial ambition and in doing so has become more than the formalisation of a medical approach to hospice medicine.

The second part is to answer whether the specialty has failed at its intrinsic task- to educate and include end of life and palliative care in all care. 

 Has palliative medicine become ‘too big for its boots’?

The phrase: “if we build it, they will come”, comes to mind when considering this conundrum. In the very act of creating a specialism, initially often drawn from anaesthetists and GP’s, we shouldn’t be surprised when that specialty discovers how much more it can offer as a consequence. If we asked an orthopaedic surgeon to concentrate only on the hand wouldn’t we expect them to become extremely good, perhaps the best, at managing hand problems? So palliative medicine has become very good at managing complex symptom control. We are also good at helping people who are in the terminal phase of life, but that isn’t what we are great at. Arguably our clinical nurse specialists are better at the general dying bit than many doctors, regardless of specialty. In Dame Cicely Saunders immortal words: “end of life care is the litmus test for all good nursing”. It seems here that the question: whether palliative medicine has simply grown and become more than the formalisation of a medical approach to hospice medicine is a good one but isn’t important to why end of life care isn’t more universally embraced. Instead it answers why palliative medicine continues to be needed and that its existence is not justified by the lack of something in other specialties but by the increasing complexity of medicine. So it is that palliative medicine wasn’t ever going to be able to make itself redundant as a specialty. Its existence proves its success at demonstrating its own value. 

 Has the specialty has failed at its intrinsic task- to educate and include end of life and palliative care in all care?

At time of writing I medically supervise a 19 bedded hospital palliative care ward. It is not a specialist palliative medicine ward for the most part. On most days it looks little different to a general medicine or geriatrics ward1. Except that everyone on it has had a clear and implicit recognition that they are dying. They will not necessarily die in hospital, we discharge most patients and we are not attempting to be a hospice. Each week we have a change of occupancy in 17 out of 19 beds. The ward provides an oasis for many patients, away from the acuity of many wards and in a place where the staff share an acceptance of the patient’s time of life -something that is as therapeutic as any tablet or injection. The positives for patients are clear: they appear to follow a more consistent and ordered discharge, a more satisfactory death and families consistently praise our staff, yet the question remains- are we removing dying from parts of the hospital? Statistically our ward looks after approximately 40% of all deaths in our hospital. The hospital remains the commonest single place of care for a person in north west Surrey to die in, which is statistically normal in most of the UK. So 40% of all deaths occurring in one ward is a lot of death and it is a significant number of patients removed from other places in the hospital where they would otherwise have died. 

 Increasingly, each organ, bone and rash requires its own specialist. Medicine has become so complicated that although generalists remain important none of us can know everything2. There is a temptation to view dying through such a lens. I would argue that doing so removes us from accessing those very specialist skills that help people earlier in their diagnoses and remain relevant even as the diagnosis becomes bleaker. So have we failed as a specialty? I think perhaps we have. The question though might be better phrased- is dying one specialty’s province, and if not, then have we failed as a community of both health care and non-healthcare workers to recognise it as part of life? This question answers itself in part - dying was never intended to sit in one place literally or figuratively and by creating havens of dying such as hospices and the ward I’ve spoken of above; we have created centres of excellent practice but also divided that practice from the normal. 

Solutions?

The majority of health care interventions occur in hospitals or through hospital direction. For many years there has been a desire to direct more care through community centres and yet when it comes to dying most people still die in a hospital as the commonest single place of death. So it is that perhaps by concentrating more on working with hospital specialists we might engender the earlier conversations and preparation needed to then ensure that if people want to die in the community they get the chance to. This will require a concerted effort on the part of ICB’s (Integrated Care Boards) and Health Boards, to provide for sufficient palliative medicine input in hospitals alongside the rest of the workforce needed to deliver palliative care well. If all of the resources are in the community then it is unlikely that anything will change, a balance is needed.

As a society we will always have a gap between resources and aspiration. However, there are resources that may be providing very well to only a select few in our communities. An equalitative approach where all funding is allocated more equally on a regional basis could allow the changes above to be enacted. However, in order to do so these changes would require tremendous political and social support and to enable this people would have to understand what palliative care is and we are still some distance from this aspiration. The presence of discussions about palliative care and about dying on news and talk shows demonstrates that change is slowly occurring and with support more can be done. I’m hoping to help this change by writing this article and I’d like to challenge you- how can you help?

Disclaimer: all opinions in this article represent those of the author and not those of his employer.

1.    NHSE 2026 model for acute admissions to hospital and the first 72 hours including section 2:Frailty.  https://www.england.nhs.uk/long-read/the-model-acute-pathway-standards-for-care-of-acutely-unwell-patients-in-their-first-72-hours-in-hospital/

2.    The assisted dying bill 2026. House of Lords. https://bills.parliament.uk/bills/3774