Can Palliative Care Support in the Community Help Bring Some Value Back to Death (And Life)?

When I recently saw a doctor-colleague facing the impending death of his son-in-law from cancer, the transformation that happened in our society (about how it deals with the dying) over two generations became obvious to me. The most striking memory is the expression of the dying man’s 15-year-old son, who was walking in the background choosing books and cramming them into bags. He was not part of the conversation; when he came close the conversation flagged. He was being given an unspoken message: “This is grown-up talk; kids are not part of it”. He responded by pretending not to. He was being sent away to live with an uncle so that his father’s illness and death would not disturb his studies…..

A normal dying process was stretched out over weeks by interventions including an endotracheal tube and artificial ventilation of his lungs (but no pain relief). At the height of his suffering, he tried to pull out the tubes and cables, but his arms and legs were bound to the bed. His wife and father-in-law could visit him for only 5 minutes a couple of times a day, and each time had to watch the man dying a thousand deaths, his dignity and personhood violated in the worst possible way. Eventually, when the doctors suggested a tracheotomy and total parenteral nutrition, the family said no. The man died without seeing his son one last time, and the son was denied one last hug.

An excerpt from a writing by Dr M J Rajagopal1

In January 2022, a report was released by the Lancet Commission on the Value of Death1. The report highlights how dying has changed radically over the last several generations. With people living longer, death is now coming later, and dying is often prolonged. Potentially inappropriate treatment continues into the last hours of life. More and more people are dying in hospitals as opposed to with family back in their community.

Healthcare and individuals appear to struggle to accept mortality. Conversations about the imminence of death can be difficult. Doctors, patients, or family members may find it easier to avoid them altogether and continue treatment, often leading to inappropriate treatment even when diagnosed with an illness which is irreversible, and especially at the end of life.

Death during Covid times has served to illuminate the value of a good death – for many, it was a medicalised and lonely experience, with loved ones unable to bid their last goodbyes, and come together to grieve.

The Lancet Commission1 propositions that good palliative care can provide better outcomes for patients and carers at the end of life. Palliative care regards death and dying as part of the process of life. It recognizes that it is a relational and spiritual process and not just a medical one. While there is a need to address pain and other physical symptoms, there is also a need for more thought to be placed on the importance of families and communities as part of the eco-system of support and care for the dying.

As a carer in Australia shared: “I…. did not know you could care for somebody at home but she was dying and not dying fast enough for the hospital system and they kept sending her home and taking her back in and then sending her home again. And it was very distressing …. I decided that we could do better and brought her home…I managed to care for Mum until she died at home which was a great experience for everybody, her family and me.”

The full report can be read here: https://www.thelancet.com/journals/ lancet/article/PIIS0140-6736(21)02314-X/fulltext.