I virtually attended a Palliative Medicine conference over the past three days and have heard talks from a wide range of speakers. Included were a gastroenterologist and a haematologist both from specialties who are still unsure about which patients to refer to palliative care, and when to refer them.
It becomes a self-fulfilling prophecy if all the referrals we get are very late then we cannot do as much for the patients and their families. If the referral only arrives 72 hours before death or two weeks before death, does that mean palliative care is synonymous with end-of-life care? But that is not what we are trying to do in reality. Our services are happy to work alongside other specialties. A patient can be on the liver transplant waiting list and also receive palliative care from the local hospice. This is different to the USA where admission to the hospice programme means you cannot have ‘active’ treatments anymore. We have many patients who are still on their palliative chemotherapy/radiotherapy/immunotherapy and many other active treatments including haemodialysis. Even as the patient undergoes various treatments we are keen to help reduce suffering in its many forms, both physical and emotional, spiritual, and social.
How can we get this important message across? A patient referred to palliative care/hospice doesn’t mean that you have given up on them. One of my mentors Dr David Perez who worked in Medical Oncology would talk to his patients about coming to the point where there were no more active Oncology treatments available and the time had come for Active Palliative Care.
Death is not a medical failure, it is an admission that we cannot control Nature. We can’t stop a hurricane from happening with our too human tools and knowledge. Illness can sweep through a patient and their family’s life leaving a trail of destruction. Modern medicine has made many advances over the past century but we have not been able to cure death. People will still die of things and even if we come up with cures for all current diseases, Nature will produce something else. The COVID pandemic has been a stark reminder of this fact. So how arrogant are we doctors to think we can control Nature? It’s like King Canute ordering the incoming tide to reverse itself.
Death is not a medical failure. Death is a part of everyone’s life. It is the end point of our current lives. Who knows what may happen in the future? Will it be like science fiction in which an amalgam or avatar of your conscious mind could be saved and loaded into a computer of some sort? We’ve all read or seen some of those stories. “It’s life Jim but not as we know it,” springs to mind.
Is death a defeat or is it just a fact of life, of everyone’s lives? Modern Medicine would have us believe that we can live forever. People over 80 may be given bad diagnoses and prognoses and may be upset and accuse the doctor of robbing them of so many years of life with their bad news. Whereas even 20 years ago living past the age of 80 was an achievement that many people did not have the privilege of doing. Where I work in South Auckland living to retirement age, 65 years old in New Zealand, is something that not everyone has the chance to do.
Sure it’s all relative, everyone is different and has their own story to tell. I am trying to share some stories of the death and dying of average, ordinary deaths of everyday people. People just like me and you. It could happen to each of us, no matter how strong your denial is.
The doctors, their patients and their families would’ve tried everything in their power to keep the person alive but we have not been able to cure death despite many advances in modern medicine. As Shakespeare wrote in Hamlet, Death is the great leveller. No matter who you are, or what you have, it will level the playing field out in the end. Everyone will be affected by it at some stage.
Has society changed to be death-denying? Until COVID struck people might have reached the age of 32 and may never have had to attend a funeral in their whole life. I attended my first funeral just before I turned two years old. I remember standing at the edge of what I found out much later to be my great-grandmother’s gravesite. In each cell of my body, her mitochondrial DNA lives on. My father told me to mind the edge as he didn’t want me to fall in. I found it interesting to be given some gravel to throw on top of what looked like a large rectangular wooden box. People didn’t usually offer little boys stones to throw. I was worried that it would make the box dirty, but I was assured that it was okay to do so. I wasn’t sure why everyone around me looked so sad. Some were so upset that they were crying. What had happened and why were we there?
COVID has led to unimaginable scenes playing out on media screens worldwide. With mass grave sites dug in places like New York City. Thousands of people have died in first-world countries across the globe over the past two years. Death has made a horrible comeback. You thought you had defeated me, well you were wrong.
So how do you get society to accept care for the dying when society has moved away from it? When modern medicine had been so successful that people can no longer accept that they or their loved ones are dying. When the families of clinically brain-dead people go to court to try to stop the doctors from discontinuing life support. Modern medicine’s greatest success has led to a death-denying culture. We don’t talk about it and it won’t happen. Well, it does happen. To everyone. Everyone alive, will at some stage die. Hopefully after a long life but not everyone is so lucky.
Just because you refer to palliative care doesn’t mean you are abandoning your patient, you are just widening the team of people who will be there to support your patient, their family and also yourself.
Do the other specialties think we may be stealing their patients away from them? So how to do the stealth approach? Let’s not talk about death and dying, instead why don’t we have a serious illness conversation? We aren’t referring you to palliative care but supportive care or supportive oncology. St Christopher’s – says it is, “More than just a hospice.” We don’t want to frighten our audiences after all.
I’ve been called many names in the past, a lot of people have called me Jason, David, and John. As other people in medical school didn’t look like me, apart from us all being of Chinese origin and wearing glasses. Some of us were skinnier, others were taller. Did we all look the same to our teachers? Not to all of them, but to several of them. Call me a hospice doctor, call me a palliative care doctor. Call me whatever you want. I just want to help. What I want to be known as is a doctor who cares.