This week’s guest blog post is a review of the recent BBC Horizon documentary, We Need to Talk about Death, written by Living Life to the Fullest Co-Researcher, Sally Whitney. In the documentary, Dr Kevin Fong makes a personal journey through the moral questions about death that face not just the medical profession, but each and every one of us. Many of the themes discussed in the documentary relate to the stories of disabled children and young people living with conditions labelled as life-limiting and life-threatening, and those of their families, that we are gathering in our project, Living Life to the Fullest. You can watch We Need to Talk about Death here on BBC iPlayer.
The program touched on issues that were relevant not just to palliative care and the process of dying, but in fact seemed to me to be applicable to the whole of healthcare.
It portrayed a range of doctors and facilities (hospices and cancer centres) that clearly understood the importance of doctors taking a step back from their everyday, medical school-enforced method of treating patients. In normal practice doctors are happiest “actively doing things” to improve symptoms of pathology, “continuing treatment in a pursuit of a cure”, as this has been at the core of all their training. And this pursuit of ‘curing’ can have a negative effect on patients’ choice, with some feeling penalised for not choosing to go for the most aggressive treatment option. Some people don’t even feel they have the option – whatever the cost to them personally. One patient in the documentary commented, “you may feel duty bound to go ahead with the treatments”.
A consultant admitted; it’s “easy to slip into the conveyor belt of big treatments,‘but harder to have the conversation [about the facts of dying]. It’s easy to go to default [mode].”
Importantly, this programme highlighted the need for a change of focus. One of the palliative care doctors stated “a patient passing away isn’t a failure” and conceded that at the end of a person’s life they want to “spend (their) time doing the things that make [them] human, not things that make blood tests better”.
The comprehension that dying is a part of a person’s life, a life that holds journeys, histories and relationships, and is not just a biological event happening to a biological organism, is a breakthrough. It’s about recognising the patient as a multi-layered person, giving choice to that person and giving them back the control over their life and their body – ultimately, treating them as a whole. The doctors on the documentary described this shift and change of focus as a tool that “empowers the patient… [looking] at what’s important; the quality as well as the quantity of their lives. It’s about not letting disease control your life”. And that’s what seemed most striking, the need to give patients choice. Not just in the matter of their lives ending and how they want that to happen, but also for ALL patients under the authority of physicians. Choice and ownership of one’s own body and way of living is key. One patient stated, “it’s about what I want to do with my life not what others want me to do with my life”. Simply put, it’s a “change of focus to what’s going to make an individual’s life better, not just [bring about] change in a scan”.
The understanding that the dying process is not just a biological stage nor a failure on behalf of both patient and doctor to ‘overcome’ a disease was summarised by one of the hospice doctors when he said; “Dying isn’t about dying from a disease, it’s about dying from a life”. It was this emphasis on life that was the central theme of the documentary.
The notion of dying being a process of completing life gave a poignant and positive interpretation of death. Dying becomes a period where a person uses their energy to complete life.
More than that, the documentary highlighted some of the same themes we have drawn from our project, Living Life to the Fullest. That, regardless of the length of life or the timescale one has before it ends, each life can be lived to the full, fully completed and that every moment of that life is important no matter how long it is. In regards to the young people living with LL/LTIs that have participated in our project, it is clear that every moment up to the point of death is important, valued and lived fully. The provision of palliative care and hospices for patients allows this ‘fullness’ of living and allows them to “live the best life they can”.
However, what was clear was that this isn’t something that can be achieved without a lot of effort and energy. The programme spoke of “frank, in depth” conversations about death that are difficult to have. However, once had, “almost everyone feels better for having them”. This ability to discuss dying leads to a number of positive outcomes for an individual; it helps them to “prepare, enables them to grieve and may lead to an acceptance of something that is inevitable for all of us”. Most importantly, it returns the power to have both choice and control to the patient. They have the right to reclaim the narrative of their lives back from doctors and live their chosen, full lives to the very end.
The power of choice (not just in terms of treatment options) was strongly illustrated by the discussion about the dying process only being able to happen once the patient has permitted it. It can only happen successfully when a person “understands what is happening, engages with it” and has taken steps to allow it to happen. These steps may involve the resolution of relationships, completion of tasks, planning and decisions about the meaning a person attaches to the life they’ve lived. If we consider dying to be the concluding chapter to the story of a life then we can more clearly understand it as needing to be a greatly considered, significant stage of a person’s journey that needs to be completed. As one of the palliative care consultants stated about death “it’s about the biography, not the biology”.
Perhaps the whole of medicine can learn something from the palliative care approach? A life is only as valuable as a person attributes meaning to it. Therefore, clinicians need to consider what course of action adds the greatest value to their patient’s life, whether that life is only halfway through its journey or whether it’s coming to the end. Whatever that action may be, it is clear that it needs to be something that allows each individual to live their life to the fullest, regardless of time left.
Sally Whitney, Living Life to the Fullest Co-Researcher