Meeting grantees and learning about their work constantly challenges our preconceptions and in the case of palliative care, has made me completely reassess. I was apprehensive ahead of my first visit to a hospice but instead of a place of hushed voices and despair, I found the hospice strangely life affirming. It’s partly the physical surroundings – hospice architecture aims to create calm, reflective spaces full of natural light – but mainly the holistic joining of clinical expertise with emotional support for both patient and their family. And I certainly never expected to see a gym!
At the Marie Curie Hospice Hampstead, alongside a range of clinical and holistic therapies both in- and out patients use the gym under the supervision of the physiotherapist, and many find exercise improves treatment related side effects and also their stamina. Better physical fitness can mean being able to return to everyday activities such as cooking a meal or outings with family and friends, improving the quality of life of the patient and creating valuable memories.
I had also assumed hospices were part of the NHS so were surprised to find that adult hospices only receive on average a third of their funding from the state, and children’s hospices even less, around a fifth. I have since learned that children’s hospices work very differently to adult hospices; while palliative care is always at the centre they work more holistically, providing respite and a range of other services for children with life limiting conditions and their families.
I was better prepared for my first visit to a children’s hospice, but was nevertheless taken aback to find that most of the young patients were out for the day, several at medical appointments, and some even at school. Again, a reminder that good end of life care means helping people make the most of the time that is left, however limited.
For patients, their families and also the thousand who volunteer every year, involvement with hospices provide language and the space to better prepare for what is ahead, and a reminder that there are many different ways to approach wellbeing . Palliative care aims to create the best possible day for patients today. It’s an approach which takes a bit of getting used to. Decades of penicillin, vaccines and other medical advances have eradicated diseases that used to be fatal and vastly improved treatments of many long term conditions. We have come to rely on science, and the medical profession, to come up with solutions, and have, as a consequence, become distanced from the realities of death and dying. This is evidenced in mainstream attitudes, in how we invest huge resources in the search for new drugs and cures and very little in palliative, and in the training of professionals. End of life care is the Cinderella branch of medicine – as bestselling author and the 2014 Reith Lecturer Atul Gawande says; “I learned about a lot of things in medical school, but mortality wasn’t one of them.” For me, the main thing I’ve learned is that our attitude to palliative care needs to change.
One in three people will be touched by hospice care at some point in their lives.
Hospices across the UK support around 360,000 people each year – that’s 120,000 patients and 240,000 family members
More than 125,000 people give up their free time to volunteer in hospices each year.