The patient-doctor relationship is a central part of the hospital ecology and is constantly evolving – especially with the ascent of Dr Google. It tends to be the case that, upon finding something wrong, we will firstly, google it incessantly, secondly, go to the GP and listen to their diagnosis, and finally begin spewing out the scary, bold words we have read on various web pages. For healthcare professionals, especially GPs, they are increasingly faced with demands for unnecessary treatment and medication, as they are, by and large, told by the patient that their diagnosis is wrong.
However, in a speciality where there is no cure to fight for, where no matter what WebMD tells you, it won't make a difference, is the patient-doctor dynamic different in palliative care? Do patients ever get frustrated at David and his colleagues? Or, in a speciality that is more personal than others, was there a consistently amicable relationship? Upon asking David, he said: “Palliative care is a very relaxed speciality and we have time which is one of the most valuable and vital resources. It allows us to build a better rapport with patients“. David said that it wasn’t uncommon for patients to talk informally with him or perhaps to call him by his first name - testament to the trust patients have in palliative care healthcare professionals and the very sensitive topic with which they are working. Continuing, David said that he will get patients who are angry, meaning the doctor-patient dynamic isn't as smooth as in other times: “If I was to generalise it does tend to be the younger patients who get angry and there is a very good explanation for that. When you are older, it is a lot easier to reflect upon the life you have lived and draw strength from it but when you are young and only just beginning, the dynamic is different. That circumstance is much more difficult but that is part of my role." In this circumstance, David says that he tries to empower them and to show them that, in the time left, they as a speciality can still help the patient do whatever it is they want to do.
This in particular made me think about the concept of 'time'. In disease and dying, 'time' appears a very powerful, diverse and determining force: how much time you have lived might affect your attitude toward death, in dying time is running out, and what remains, before death occurs, is the most precious time of all – filled with final ‘goodbyes’, ‘thank you’s’ and ‘I love you’s’. Importantly, 'time' also allows palliative care professionals to understand and develop relationships with their patients and ultimately, allow for their patients’ time left to be the most fruitful possible.
When I told some of my peers that I was interviewing a palliative care doctor a lot of them responded with “oh gosh that’s going to be sad surely?” or “wow, I couldn’t do that!” or “they are real heroes!”. This made me curious about what David gaged the public perception of palliative care to be and how that made him, said hero and handler of death, feel: “Commonly, the public view of anyone who works in palliative care is that they will either describe you as an angel or a hero, or, they will respond very negatively because you are associated with death. I will get comments like “Oh that’s so sad, oh that must be so depressing or, wow that’s so heroic". This was uncannily in line with how my peers had responded. However, and particularly relevant in the context of COVID-19, David said that the labels “angel” or “hero” made him feel "uncomfortable", and that: “All I ever want is to be good at my job and be the best I can be, not so that I can be told I’m an angel or that I’m worth my weight in gold, but for the patients”.
Where palliative care is a unique speciality within healthcare and where David had formed deductions about other specialities, especially their handling of death, I was curious as to how he thought other specialities perceived of palliative care: “Other specialities look at palliative care as being a more touchy-feely specialty, which is true. We are much more involved with patients and their family, the priorities are very different, and its highly patient-driven." Similar to public perceptions, David said that when he was starting out and would say that he wanted to go into palliative care, other healthcare professionals would either respond with “oh isn’t that going to be so depressing” or “that’s really special, we need people like you“.
Here, the modesty of palliative care is distinct and mildly antithetical to other specialties. While all specialties and organs of healthcare provision are highly patient-orientated, one could argue that within palliative care, there are limited material rewards and certainly less recognition for such important work. Consequently, the humility of the healthcare professionals and prioritization of patient experience is amplified.
Further exploring the differences and dichotomies between other healthcare specialities and palliative care, I asked David how he felt the atmosphere in a hospice differed from that of other wards in hospitals: “I think that the hospice is a very unique space. It is very calm and peaceful, we don’t have a traditional ward layout. There are a lot of side rooms and soft furnishings, it’s a lot more like a home. Patients have their own private space to make whatever they want it to be. Whereas, in the hospital, the environment depends on the speciality but for the most part of course it is very clinical and not very homely". Here then, hospice geographies lie at an intersection - between intimacy and detachment. As David said, they have soft furnishings and private spaces . Most hospices are converted homes, quite opposed to the sky-crapping, glass-walled complexes we associate with today’s hospitals. They emulate the cosmetic makeup of a home yet also have medical equipment, reception desks, and uniformed staff. Subsequently, this creates a hybrid of familiarity and 'clinicalness'. Where dying is both a scientific and spiritual process, this setting supports death, especially for the patients who are unable to return to their own homes.
When I first arranged to interview David and began thinking about palliative care and what it entails, one of my first thoughts was "Oh goodness, I couldn't do that!" - not necessarily because it would be too sad or tragic, but because I, as someone highly prone to health anxiety, would think I had absolutely every disease. Where the premise of hypochondria is a fear of the worst-case scenario, there is no doubt that, through witnessing the worst case scenario everyday, I would leave work thinking I was going to die. Upon asking David about this, I expected him to say he was immune from such feelings through his continuous exposure, but rather he exclaimed, "Oh goodness, yes", saying that he has to "take it all with a pinch of salt. I would be lying if I didn’t say that every time I got a little ache here or a pain there I don’t think could this be this or could this be that." However, David remarked that it is a skill he has learnt to live with and hone, reasoning that "while I do often see the one in a million cases , that’s what my job is. That is what I signed up for."
Along with learning how to manage spells of health anxiety, David explained that working in palliative care has changed the way he views life. When discussing this, David used the word privilege - saying how it is an honour for him to spend time with patients who are often very philosophical toward the end of their journey and share their advice and stories, advice gained through hindsight that a lot of the general public do not have access to on such a regular basis. David cited family as a recurrent theme: “People often talk about family as being so important and the most worthwhile investment in life and that has definitely changed my own views on family. Not that I had dismissed family, but it does remind me of how important that is“. The other facet of life David’s patients focussed on, or perhaps wished they hadn’t focused on, was work: “As most medical students will say, when you start out there is a lot of wanting to be the best but actually I hear a lot of people tell me that they wished they hadn’t wasted as much time with their careers as they had done. They never regret it, but they do sometimes tell me that they invested the best years of their life into this career and they are laying here now and it’s making no difference at all”. Overall, David said that "every interaction [he has] with a patient does stay with [him]", and that this has definitely “changed certain aspects of [his] outlook“ .
Interestingly, this brings further to light the unique doctor-patient dynamic in palliative care. Where patients are very sick, frail and potentially lacking full cognitive function, it may often be presumed that doctors are the only parties that occupy a paternalistic role, as they use their knowledge and expertise to guide, inform, and tell the patient what's what. However, as I have already discussed, palliative care is also a speciality guided and informed by the patient themselves - not solely in how they would like to go about their own death, but also in their sharing of accumulated wisdom. Despite the patients' suffering, they leave a mark on the staff. Through drawing on their lived experiences of life and mortality, they impart knowledge and advice to those around them - advice that is invaluable and would otherwise be unreachable.
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