Watching MPs debate the Terminally Ill Adults Bill in recent weeks has left me and fellow clinicians wondering how many of them have been to a specialist palliative care unit. It has raised a concern about whether people understand what palliative care actually provides, and what we clinicians actually do. How many people have an idea about what hospices and palliative care teams can help with, and would knowing more about such services strengthen calls to make them core parts of NHS provision?
Palliative care and assisted dying have seemed in opposition in recent weeks, with people picking sides as though they were rival football teams. I work in a sector that has had to rely heavily on charity and fundraising, which only goes so far. Last year was one of the worst in terms of fundraising for one of our local hospice charities.
Palliative care is about living, joy, fun and thinking about your legacy
Specialist palliative care in all settings is in a crisis of under-resourcing. We know that palliative care provision is patchy, and inequitable, with some geographies, settings and patient groups receiving completely unacceptable levels of care. Many don’t have seven-day on-call cover, when the reality is that crises at the end of life can occur at any time of a given week.
Palliative care is not all about inpatient hospices for those who are in the last days of life. We have (in some parts of England and Wales) community teams, outpatient clinics, support teams in general hospitals, day services and out-of-hours on-call provision. We often get involved from diagnosis onward, get to know some patients over several years, and even discharge them again if they feel better and their symptoms improve.
And when it comes to dying, most deaths are uncomplicated. Many will not require much more involvement than good local district nursing teams and their usual GP care if systems are working locally. We in palliative care probably need to do far more to dispel some of the narratives that many recent bad death anecdotes have brought up in the assisted dying debate. Yes, bad deaths certainly happen, but many people die peacefully each week, and such ‘ordinary dying’ is, of course, not reported on. In England and Wales in 2023, over 500,000 deaths were registered. Even ten bad deaths amongst those would be newsworthy, of course, but it does not constitute a norm. It was different when I was a junior doctor in the early 2000’s, when I saw some very bad deaths and there was zero palliative care provision in some of the English hospitals I worked in.
Hospices being described as full of dying patients, their pain poorly controlled and their senses dulled with high-dose morphine drips, is not the reality. The ’20 bad deaths a day’ statistic that was highlighted by assisted dying pressure groups has been debunked as unreliable. And faecal vomiting, so vividly described by some MPs, is more talked and written about than it is actually seen on wards and in communities.
When I worked at our local hospice, over half the inpatients would be discharged back home again after they had received help with their symptoms. This was often a surprise to them, because many appeared to assume that you never really leave a hospice alive. Some of the older images of hospices full of dying people seem to prevail in the collective memories, when in fact modern-day ‘palliative care inpatient units’ actually have a rather different role.
The same goes for palliative care more generally: much of it happens in the community. I have seen many of my palliative clinic patients for years, and they live life alongside their terminal illness. Always knowing that time may be short, perhaps one pneumonia away from potentially dying, but equally living life to the full whilst they still can, jetting off on holiday, or going clubbing, hiking, cycling and working, and generally being part of their local communities.
One of my younger patients recently told me in a video consultation that she just doesn’t fit the ‘image of a cancer/palliative patient’ that people in her environment have come to expect. Many of my patients hold jobs and are on reasonable doses of morphine or oxycodone, without too much in the way of side effects, so they can actually get on with their lives. They drive their cars, perfectly legally. We also review whether they still require the meds, sometimes weaning them off opioids once a reversible pain crisis is over. All this makes predicting a diagnosis of less than six months with any form of accuracy quite hard.
The recent debates have made many of us working in this area feel somewhat downhearted, partly because there are a lot of clichés about this area of work that will just never go away. But it has made us think about ordinary ‘living with dying’ in our society, and how we show that it can be done well. Some of us try our best to frame this world in a more positive light, and I know quite a few patients who are quite happy to help in this, which of course is a good start.
A number of my patients have agreed to become part of information campaigns to talk far more positively about palliative care and living with dying, including good advance and future care planning for when their illnesses progress. We have produced videos together on why you may want to consider having a plan for when you become less able to communicate your views, or are getting closer to the end. Sound dreary? Not if you take my patient Keith’s approach to it, who sold tickets to his own funeral party.
A lot of palliative care clinicians, including Dr Kathryn Mannix with her books (including With the End in Mind) have sought to demystify this area of life and also to inject a bit of much-needed humour and warmth into ‘ordinary dying’. It’s poorly understood, and people like to brush it away. With assisted suicide, it now risks being medicalised even further and also brought forward quite considerably for some people.
News and media narratives don’t always help: ‘All the medical care stopped and then the patient was for palliation only‘ or ‘They were then just for palliative care’. If ‘no longer for active care’ means they are now for palliative care, I invite anyone to join our very active ward rounds with patients who receive blood transfusions, iv antibiotics, immunotherapy and scans, all within balance and reason and in close consultation with patients and families. We actively review and discharge some of our patients because, whilst they may have a disease that will likely be life-limiting and their risk of dying is that bit higher, they may still have years ahead of them. Amongst some of my patients and their families, this sometimes raises a chuckle. ‘We thought: palliative care, that’s it, just a few more days…’ Not so.
Recent heated debates may have left some with the impression that most deaths in the UK are bad, that palliative care cannot do anything and that hospices are ghoulish places that only give morphine infusions. Think opium den, just with doctors and nurses. This is completely wrong.
Palliative care is evidence-based, follows guidelines and reduces strong opioids as much as it starts or increases them (careful titration according to evidence-based guidelines). Palliative care can bring cheer; it brings out the best in people, thinking outside multiple boxes and helping people focus on important achievements in life: getting rid of a nasty infection with intravenous antibiotics, getting a blood transfusion to improve anaemia, receiving immunotherapy from the oncologists, radiotherapy, being pain-free to go for a bracing walk in the Cotswolds, getting to a Millwall game, getting married in Vegas, getting to a Slipknot concert, just being yourself. Whether you’ve got six days, six weeks, six months or six years left to live (and who knows?).
Wherever you stand on matters like assisted dying, good palliative and end-of-life care should never be under-prioritised. We need better funding and in parallel we need to convey very clearly that palliative care is about living, joy, fun, thinking about your legacy and working with a team to get on top of the big challenges. It’s only a little bit about dying. Let’s call it assisted living.
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