Let’s talk about death and dying

There is an old joke about someone collapsing on an aeroplane mid-flight. The flight attendant shouts out, “Is there a doctor onboard?” A passenger comes forward but just stands there. “Why aren’t you doing anything? He’s dying!” the flight attendant cries. “I’m a doctor of philosophy,” the passenger says dryly. “We’re all dying.”

I can relate. I’m a moral philosopher, and a lot of my professional life has focused on matters relating to death. From the rightness or wrongness of abortion, to the morality of capital punishment or the ethics of using dead bodies for medical research, I’ve found that death, in the abstract, is an endlessly fascinating subject.

But death is no longer just abstract for me.

A few years ago, I lost my mother to cancer. I am currently facing a serious health probem of my own. So I’ve had a lot of time professionally and personally to contemplate death in the not-so-abstract. 

I teach in the department of medicine at the University of Cape Town, where I talk to my students about respecting patients’ choices, avoiding causing harm, helping others and treating all people fairly. Developed by biomedical ethicists Tom Beauchamp and James Childress in the 1970s, these standard ethical principles — called autonomy, non-maleficence, beneficence and justice — signalled a shift from the past paternalist approach of Western medicine and have dominated medical training ever since. 

In my classes, we talk about patients’ rights, including the right to refuse lifesaving treatment like blood transfusions on religious grounds, or the right to have life-sustaining treatments withdrawn, like saying no to more chemotherapy or other cancer treatments. But we don’t talk about what happens after patients exercise these rights, and what it may feel like for the treating clinicians when their patients die from what seem like preventable deaths. 

Difficult conversations

In June I attended the annual Palliative Care Conference in Durban. I ran a workshop for conference attendees — nurses, clinicians, social and community workers and hospice carers — all of whom treat and care for patients with terminal diseases. I was struck by how at ease they all were when they talked about death. 

In my workshop on using the tools of philosophy to resolve ethical dilemmas, I used an example of a child with terminal cancer to illustrate a point, and during the break, one of the workshop participants, a palliative care nurse (a nurse that helps make patients at end of life as comfortable as possible) came to show me a photo on her phone. It was of her niece with a similar condition, and tragically, a similar prognosis. While I focused on the tubes attached to the young child’s body, she focused on the child’s smile and the fact that her parents had the chance to hold their baby. 

I wanted to rage and cry at the injustice of the situation, but she seemed calm and at peace. These different reactions suggested to me that there is a critical need to transform the way we relate to death — and we can start by having conversations about it. 

We can start with our medical students who are focused on their future jobs of “saving lives”. Of course, I’m not suggesting we shouldn’t train our healthcare practitioners to focus on saving lives. But I do think — given that we are all going to die — that we shouldn’t avoid the subject as many of us do. We could do so much better to prepare our students ethically, emotionally and practically for one of the critical things they will have to deal with in their professions. If we talk about death with our students, and how it feels to see someone die, perhaps they will be better equipped to help support those who are dying and those who are grieving.

Talking about death is challenging. It touches all of us in different ways, whether in our personal experience or professionally. We may have competing views about it, informed by our experience, our religion, our culture. But “difficult” is not a reason not to have the conversation.

Here’s the thing: not only do we not talk enough about death with our students, but we also don’t talk about dying. I recently read palliative paediatrician Alastair McAlpine’s wonderful Prescription: Ice Cream, his memoir of his experiences as a medical student and then intern at Chris Hani Baragwanath Hospital. One passage stayed with me:

“No lecture had prepared me for this. No one had counselled me on how to comfort someone who was dying. Or what to say to someone who was in such pain and distress. I had studied the pharmacological approach to pain management, but not how to deal with loneliness, fear and sadness. Nor how to manage my own feelings around a patient who was slipping away. I didn’t know what to do or say. In the face of death, words felt impotent and inadequate.”      

Patient mortality, professional failure

For many philosophers, the task is to analyse and understand death. For me, the task is also to make space for it: in our classrooms, our hospitals, and our hearts. 

In our classrooms, we need to go beyond asking students what kind of doctors they want to be and ask them to think about what kind of doctors they want to be when their patients are dying. 

We need to have conversations about how to transition from offering care that cures to care that comforts patients with irreversible conditions such as terminal cancer or end-stage organ failure. When we teach students to be empathetic to their patients’ and families’ situations, we also need to caution them about becoming overwhelmed and not taking on their patients’ suffering as if it were their own. If we don’t teach them how to manage their own mental health, we risk them suffering from depression, burnout or compassion fatigue. We need to teach them to learn from experience without being consumed by it. 

In our clinics and hospitals, we need to challenge the idea that patient mortality equates to professional failure. We can reframe morbidity and mortality meetings, which allow clinicians to review patient care and treatment, as opportunities for learning rather than for shaming. We can encourage our colleagues to view each other — and themselves — as companions who support patients in the full human experience rather than as warriors fighting inevitable biological processes.

Chocolates and jokes

Upon receiving my recent diagnosis, my first thoughts and words were “I don’t want to die”. I realise now that what I meant was, I don’t want to die now. Or soon. 

But having to consider that I will die at some point has helped me think about how I’d like to live with whatever time I have left — and hopefully it’s a lot. It’s also helped me talk to others about how I’d like to die and what I’d like after my death. (For example, I don’t want the word ‘feisty’ on my tombstone, however appropriate a description of me it might be.) 

Talking about death has reduced the anxiety I had about death, and given me some assurance that when the time comes, I can trust others to know that I will have dignity in dying. That if I cannot care for myself, or speak about what I want, they will be able to do so for me, authentically — and hopefully with a dash of dark humour. I’m not religious, so I asked for chocolates and jokes rather than thoughts and prayers. 

I believe that how we care for ourselves and for others is fundamental to who and what we are. How we live with the dying can say a great deal about who we are, and how we die can say a great deal about how we’ve lived. 

Heidi Matisonn is a senior lecturer in bioethics in the EthicsLab at UCT’s Neuroscience Institute and department of medicine.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.