Throughout my discussion with David, the theme of an individualized, personalized, and patient-driven death was brought up recurrently. For David, this was the bedrock of palliative care, the very essence of what it offered as a specialty. Where death and dying often appear to be processes that are largely out of our control, David emphasised that palliative care is all about patient empowerment, "showing patients that they are in control of their own death and it can be safe“. Death, after all, is a hugely individual and unique process, with each patient on a very different journey toward it. With this in mind, for those working in palliative care, it is about "patients being in the driving seat and focusing on what is acceptable to them - we follow their guidance and always aim for an individualized death“.
The individualised, patient driven death that David described was also synonymous for him with being a ‘good death’: “For me, a good death is one that is in keeping with a patient’s personal wishes and hopes. It is about dedicating time to plan, discuss and understand what is important to a patient. Of course then it is also about dignity, peace and control”. David mentioned a patient who had died the day of our discussion: “Her main concern was that she wanted to be pain-free, wanted her sisters at the bedside, wanted to be visited by her own priest, wanted to have particular flowers and the room decorated exactly how she wanted it“ . To David, this patient’s death constituted a 'good death': “It was what she wanted and that’s what we provided. We have limited control over the process of dying but it is about achieving everything else around the death. It is a very subjective process and I like the way, as a specialty, we do it. I definitely wouldn’t want a checklist to work from. It is the end of a unique journey and it should be whatever they want it to be". Here, whilst the hearts in my university accommodation pounded on through teenage and twenty-something tantrums and triumphs, others stopped. The heart of David’s patient stopped peacefully, with the patient surrounded by people and items they loved, pain-free and comfortable. Whilst I am aware that not all death and dying occurs in this manner, it is evidence of the pivotal and wonderful work that David and his team do.
Throughout the past eighteen months, death has been a word and event we have heard and witnessed more often than ever before. Where palliative care's ethos is that of spending time with the patient to build a relationship, trust and understand their preferences such that an individualised death can be delivered, COVID-19 and the lack of social contact has challenged this significantly. Throughout the pandemic, especially for those who have died of COVID-19, their deaths have almost all been identical: surrounded by hospital staff, hospital equipment, and other patients, missing anything that is unique, specific and special to them. Explaining, Davis said that “people haven’t had time to plan for the death they want. This definitely challenges my view on whether those people had a 'good death'. On the one hand, yes given the circumstance but would that live up to my standards – probably not“. Often, we might think of all the things the pandemic has changed and affected: our social lives, education, work, family dynamic, mental health, hobbies, freedom and ability to go shopping, travel, or take part in sports. Largely speaking, it has totally reconfigured the way we live our lives. However, one element of life, of normal life, COVID has also affected is death - of the experience, preparation and feeling associated with it. This in particular paints death not as something extraordinary, exceptional or unfamiliar but as something natural, normal and part of life.
Developing on times he felt he hasn't been able to administer a good death, David explained that this is most common in the hospital, as opposed to the hospice, and almost always in relation to patient wanting to be at home, but sadly not being able to: "Because of our complex interaction with health and social care, there have been times where we have missed the boat and the patient has become too unwell so hasn’t been able to go home. This is not an uncommon situation. I do recognise that this is one of the less streamlined services but for those patients, I do feel like we haven’t done well by.”
This definition and label of a 'good death' was surprising to me as I have always considered by father’s death as being a good death: instant, pain-free, and cognitively unaware of his impending mortality. However, upon consideration, if he had been diagnosed with a terminal illness, both I and he would have wanted it to be exactly this - individualised, within his control, and managed - entirely in line with what David described. While this doesn't render an instant death as 'bad', it does however highlight just how subjective death and understandings of it are - even more of a reason why an individualised death is of central importance within palliative care.
The ease with which David mentioned the patient who had died only a matter of hours before our phone call led me to ask how he viewed death, both as a medical professional and as an individual outside the clinical realm: “Unsurprisingly I am very familiar with it. I see it on a daily basis. It’s a culmination of a lifetime of experiences and relationships. It’s a grand finale." From a medical perspective, David said that he "doesn't see it as being overly medicalised" and that from spending time with his patients throughout the process, doesn't see it as being as sad as one would think: "A lot of my patients feel very at peace that their time is close. I have had patients who are happy and joyous“. Speaking about his non-medical and more personal sentiment toward death, he said: ”I’m not scared of death, I believe it is a natural process, but it is also such an individual experience . In my own death I hope that I have control. The common thing I see is that patients who have some sort of control or a road map have a much better outcome and much happier than those who have a more unclear trajectory“.
The idea of death as being a natural process is something we hear a lot - it is inevitable, normal, part and parcel of life and what it means to be alive. Perhaps further highlighting how subjective this process can be, death can be 'natural' in many different ways: biologically, scientifically, religiously, and spiritually. Upon interrogating this idea with David, he said that for him, even as someone who works with death professionally, death has an aspect of all the above: "Scientifically, I might be able to quantify it – failing heart , failing lungs, loss of appetite. I can explain the physiological aspect of it. However, there is often a change that occurs in patients when they know that it is their time. It’s not uncommon for me to go into work and have a colleague tell me that a patient has decided that today is their day to go - this to me is the natural part of death that is perhaps more spiritual and much harder to quantify and explain, but is also right and okay.“ Concluding, David said that the medical professional side of him would “hide behind death as being scientific“ but the human-being, non-medical side of him “knows there is a complete other aspect to it“.
Along with death and dying, the 'afterlife' is another connected concept that also has multiple different beliefs attached - scientific rationale says it doesn't exist, but religion and sometimes our hearts and minds, whether we follow a faith or not, believe it does. Further drawing on the tension and attachments between the medical professional and non-medical facets of David’s personhood, I explored this with David: “I’m very conflicted. Whilst the rational, scientific side of me finds it hard to follow the rationale for it in religion, there are moments when I think about how molecules first came together to become a cell and I do think there is something more powerful to that. Whilst I might not describe myself as religious, I would say I’m spiritual. I believe we are a culmination of all the people we have interacted with in our lives and that carries on after we die. I believe that I will live on in the memories of those I have touched and those who have been close to me”.
David’s understanding and view of death and the afterlife was inspiring to me and made me wonder how my peers and myself understand death. Upon asking a friend of mine what they thought death would be, they said: “I think it will be like an extended form of sleep but I am scared of death", reasoning that “there is no second chance, there is no going back and there is certainly no recovery". I asked what type of death they would like when the time comes: “I just hope it's painless and I would like to be able to say goodbye to people". My own views are akin, however I don’t think I could stomach saying goodbye, similar to how I couldn't have stomached saying goodbye to my dad. Shortly after my dad died, I would wander to the bench in my school field, look up at the clouds and imagine him sitting on one - watching, comforting, and guarding me. I hope to do this too - be it from a cloud or from their memories - for those I leave behind.
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