I’m currently taking some time out of the hustle-bustle of the busy ICU to undertake a bit of an elective period in palliative medicine. So I’ll be posting a bit on some of the aspects of palliative medicine that I think are relevant to the critical care clinician, be they doctor, nurse or paramedic.
The first thing I want to talk about may seem obvious, but I’m surprised how few people know the true answer… What is Palliative care?
I’m reminded of the episode of “The Big Bang Theory” where an oblivious Sheldon keeps responding to an increasingly exasperated Penny’s request to know what Leonard does for a living with the answer “What is Physics?” I sometimes feel the same exasperation trying to explain what I do to my colleagues.
I guess the main misconception is that people are confusing palliative care with end of life care. A Venn diagram come in handy here (When don’t they come in handy?) End of life care is one aspect of palliative care, but that not all there is.
So if it isn’t end of life care, then what is palliative care? What about societies and college’s definitions? They must be helpful.
“an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
“Palliative Medicine is the study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life”
Derek Doyle, Oxford Textbook of Palliative Medicine, 1st Ed
“the medical care of patients whose disease is not responsive to curative treatment”
Australasian Chapter of Palliative Medicine
The WHO definition seems a bit wordy. The definition from AChPM is more concise, but I think that the essence of palliative care is best summed by Sir Raymond Hoffenberg, past president of the RCPE;
“Palliative medicine is no more, no less than the quality of care we should be offering all out patients every day – care tailored to their needs, skilled, compassionate.”
That’s all it is. Good, meticulous, common-sense bedside medicine. Provided by compassionate, pragmatic doctors who don’t lose sight of the big picture. Sounds a lot like intensive care doesn’t it. Palliative care is medicine that doesn’t ignore the elephant in the room. We acknowledge that the patient has an incurable illness. We don’t dance around the topic of death. We provide simple, effective treatments that are aimed at improving quality of life. Still sounds a lot like intensive care doesn’t it?
The other thing I like about Hoffenberg’s definition, is that it reminds us that while being a specialty in it’s own right, the delivery of simple palliative care is an essential skill for all doctors. More importantly, the delivery of good end of life care, is an essential skill for all health care professionals. A palliative care consult should only be required for difficult, complex cases. Unfortunately the increasing silo-isation of modern medicine means that very few doctors feel comfortable saying the word “death,” never mind providing end of life care. The result of this of course, is that scores of patients who wanted to die at home end up dying in ICU without anyone ever asking them what they wanted.
Some of my colleagues are genuinely surprised when they see me ordering blood tests, or ordering a CT. “Aren’t you the palliative care registrar?” They say with a tone of confusion. As if the only thing I should be ordering is a huge dose of morphine. But modern palliative care is more than just syringe drivers and laxatives (obviously that’s still a huge part of it though.) We will do bloods to find things that we can treat to improve quality of life (hypercalcaemia or anaemia for example.) We will do CTs to find things that we can treat to improve quality of life (big pleural effusions or ascites or bowel obstruction or biliary obstructions.) One of the things I enjoy the most about palliative care is it allows you to think outside the box. It allows you to use a drug for it’s side effects rather than it’s intended effect; to do a minimally invasive procedure knowing that the risk-benefit ratio almost always lies in favour of benefit.
Some patients receive palliative care for years and years (prostate cancer, motor-neuron disease) many receive palliative care while still receiving disease modifying treatment (myeloma, and indeed many solid organ tumours in the age of “-mibs” and “-mabs”) and some patients receive palliative care while simultaneously awaiting a cure (cystic fibrosis awaiting lung transplant.) We look after a heterogeneous group of patients of all ages who don’t all have cancer. In many ways it’s just good, general, internal medicine that doesn’t get bogged down in pointless minutiae.
The other aspect of palliative, of course, it the social and spiritual aspect. Until recently I’ve never had to ask a patient if they’re religious (I actually ask “what’s important in your life”) or talk to a patient about their fears. It’s both incredibly difficult and incredibly rewarding.
So what is palliative care? It’s medicine. The way it should be. Delivered by caring, compassionate doctors and nurses (and paramedics) who understand the big picture, can communicate with patients about spirituality as well as symptoms, and have an understanding of pharmacology and pathophysiology that allows them to prescribe simple effective treatments focused on quality of life. That’s all. We don’t ignore the elephant in the room, we embrace it.