Death: cell division ceases, the cogs in your brain stop turning, the cardiovascular system collapses, your lungs fail, and circulation halts. Not temporarily, but indefinitely. Your body completes its very last process - whatever that may be. After two hours, rigor mortis kicks in causing your muscles to stiffen - those muscles you will never use again - not to lift a spoon, read a book, kiss a cheek or hold a hand. Once pink and plush, now stripped of their colour and functionality. This will happen to you - the most inevitable process known to man.
For some, namely my own father, death was quick and sharp. Taken in seconds, a sudden loss of control and the car crashed. The steering wheel pierced into his ribs, breaking all twenty-four of them - their collagen framework puncturing his heart. I remain thankful my father never suffered, screamed in agony, or felt life evaporate from him. I’m grateful I never had to watch him disintegrate before me, losing physical and cognitive function, whilst more moments he was to miss would gradually occur to me, stinging like salt in a fresh wound. He was gone, that was that, and I was to have to no say in the matter. However, more commonly, death occurs as the result of a chronic illness, an amalgamation of successes and failures, tests and trials, risks and chances, hoping and surrendering.
Within medicine, palliative care is the specialty people attend when they have lost this battle, when the balance has been tipped, and commonly, when people have lost hope. I conducted an interview with David - a doctor in palliative care. He works both in a hospital and a hospice and enlightened me on the multiple different facets to palliative care. He spoke fondly of his specialty, what it has taught him, how it has influenced his view of death, the differences between palliative care and other specialties, and common misconceptions therein. While palliative care is a widely misunderstood specialty, I hope this interview demonstrates that it is quite incongruous with such conceptions. Whilst yes, it is sad and grief stricken, it is also hopeful. Palliative care is a place of acceptance and celebration and of peace and trust. Mostly, it is the stage where the grand finale will take place.
My first question to David was why he chose to work in palliative care: “I get to build such a relationship with the patients, and I get to know them well. Palliative care is different from a lot of other specialties in that there isn’t any facelessness“. David works predominantly in a hospice but also makes regular visits to hospitals to see patients on other wards. He informed me that his role as a palliative care doctor differs depending on whether he is in hospital or a hospice: “In the hospital I see myself as a patient advocate. I tend to see my role as more of a chance to listen, give information, to understand what the patient wants and doesn’t want, and what the patient doesn’t know and needs to know. It’s about letting their teams know what is important to them and how they are feeling“. Whereas, in the hospice, David told me that his roles are more and varied. While always being there to support the patient, his roles may also include talking to doctors and family members on their behalf, for example if a patient no longer wants to continue their treatments. Equally, sometimes his role may be more paternalistic and "helping them see that actually at this time, if this is what is important to them, we need to start working on that, maybe not starting a whole new treatment but making sure that they are happy and are doing what they want in their final days". In this sense, David said that, more often than not, he has to be the realist: "I have to burst a lot of bubbles - I have to be honest, that’s a large part of my role. And sometimes the truth does hurt“.
I asked whether he had moments where he wished he didn’t have to “burst a bubble” or break bad, in this context, fatal news:“When I was less familiar, I did feel fear of how they might react when I do break bad news because you never want to cause harm but sometimes you know that the news you are going to break will cause harm. In my experience you never truly know how a patient will react or respond. I have become more relaxed and less anxious about breaking bad news now because it’s more about seeing how that news will impact the patient“.
Whilst David’s roles differ depending on the setting, within both he is there to support the patient; help them on their journey; allow them to forge an individualised death; ensure that their needs are met and that they are fully informed.
Hospices first entered the care scene in the 80s and 90s and often had very Christian names such as 'St Anne’s' or 'St John's'. However, David said that the narrative is changing and that increasingly hospices are "trying to be more inclusive and reflective of British culture today as opposed to what British culture was in the 80s or 90s", adding that "within our specialty we have tried to change our approach to culture and spirituality”. The process and ritualization of death and dying is highly subjective and culturally diverse. Where David is working with death everyday, he witnesses this subjectivity a lot: “I have noticed that Asian families, both second generation and first generation, view death very differently. They have a larger preference for being at home, that is a lot more important to them. They are also slightly less comfortable welcoming in care from the outside. That is a generalization of course but it is something I have picked up on and largely down to the importance of family in certain cultures”. Further, David said that patients who are more spiritual ask for more involvement from religious leaders and that often, as they are moving toward the end of their life, might enter a “re-admission of practice or faith“.
Regarding the cultural, spiritual and religious preferences of his patients, David said that as a specialty, palliative care "strives to not just find these differences but react to them“. Where palliative care allows for a stronger and closer bond to be formed between healthcare professional and patient, David said that through spending time with the patients and gaining their trust that they as a specialty are able to “understand their culture and what is important to them” . Thus, dying and death are approached in a culturally and spiritually sensitive way, with doctors striving to meet their patient’s needs and respect their beliefs. More so, continuous efforts are being made to break with the past, in an attempt to be more welcoming and inclusive.
A word that David continuously used throughout our conversation was 'hope'. Initially, his use and emphasis of this word baffled me: within a specialty synonymous with death and where the sensation of hope is associated with looking forward to a better future, was there a place for such a phenomenon within the walls of a hospice? David responded: “Hope is everywhere. We try to install a lot of hope into patients and a large role of ours is giving hope. Often when patients first arrive they have lost hope and a lot of our role is trying to offer them hope but at the same time ensuring that we don’t make any promises.“
However, David also acknowledged the other side to this - uncertainty: “I get asked on a daily basis, the age old question of, “how long do I have left?” and there is just no answer for it. The way I have learnt to handle it is to make sure the relatives and the patient are aware that there is a huge amount of uncertainty“ . Continuing he said, "I would say that out of most specialties we deal with uncertainty the most. Through my training and through continuing to practice, I have become a lot more comfortable with this uncertainty“.
Here, death appears multifaceted. Death is the most inevitable, imminent and inescapable process, however, its cause, when it will occur, and what form it will take is entirely unknown, uncertain and unpredictable - something that many seek comfort in, and others fear and trepidation. Subsequently, those working in palliative care uncover many grey areas and are very accustomed to navigating them. The torch guiding the staff and patients through this uncertainty, however, is hope, which appears ubiquitous within palliative care.