The Irish, it is said, are great with the dead, but not so good with the dying.
A new survey carried out by the insurer Royal London would seem to bear this out. One thousand adults were asked about their experience with death, dying, and bereavement.
When posed the question, “Thinking about the last time you suffered the loss of a loved one, what is your greatest regret?”, nearly half (49%) of the respondents agreed with the statement: “There are so many conversations I wished we had before they passed”; 32% chose “I have no regrets”; 13% regretted not having discussed family and possessions, and 12% regretted not discussing funeral arrangements.
It’s not just relatives who avoid these conversations: Doctors, too, tend to shy away from these discussions with their dying patients, so much so that the phrase 'the difficult conversation' is now routinely used.
Why should this conversation be so difficult?
There is an understandable reluctance on the part of both doctors and families to cause distress or extinguish hope. This reluctance — or, as the late doctor and writer Kieran Sweeney put it, “a hesitation to be brave” — is misguided, and often only increases suffering by inappropriate and futile treatment at the end of life. Most of us, when asked, express a preference to die at home, but only 20% of us will do so.
More than half of all deaths in Ireland and the UK take place in acute general hospitals. Too often, the difficult conversation takes place at a time of crisis, in a crowded, noisy environment.
Sometimes, this conversation never happens at all. The Liverpool Care Pathway was designed to bring hospice-type care to patients dying in NHS general hospitals. An audit conducted some years ago found that most patients on the Pathway (now abandoned) didn’t know they were dying. People who are “actively” dying — as the oxymoronic phrase would have it — may be too weak or too drowsy to engage in such conversations.
Nowadays, even in the year of the Covid-19 plague, most deaths still occur after a prolonged illness: We have ample time and opportunity to have the difficult conversation. Some doctors use a simple test to trigger the difficult conversation in patients with a chronic, life-limiting disease.
The test is the following question.
And this conversation should be a process, not a once-off dialogue, and should involve families too.
How can doctors do this in the setting of an acute general hospital? Professor Robin Taylor, a Scottish chest specialist, developed a model for early end-of-life care in patients with advanced chronic obstructive airways disease (COPD) and emphysema. If the answer to the surprise question is “no”, the patient and their family are invited to a dedicated clinic run by a specialist nurse. Forty-five minutes is allocated to the initial “conversation”.
This is the forum where the “difficult” issues are explored: What is your understanding of your condition? What matters to you in terms of quality of life? When you are next admitted to hospital, do you want maximum intervention, up to and including ventilation in the intensive care unit? Have you thought about where you would prefer to die?
These are the questions that doctors cannot explore during the average busy out-patient clinic, questions that may be inappropriate at a time of crisis. The very fact that this conversation is called “difficult” is emblematic of the obstacles to it. Surely, the conversation should be essential, not difficult, and should be an ongoing dialogue, rather than a single hurried exchange triggered by an emergency.
Hospitals and health services will have to support doctors to have this conversation.
As dying has become increasingly medicalised, the role of families and communities has diminished. Death is now hidden away in institutions, and its cultural and religious significance has faded; we are losing the language and rituals. We need a rebalancing.
We need to recognise that death is not simply a medical event — dying people and their families have needs beyond the merely clinical. Dying is a spiritual and relational process: A “good” death requires more than pain control and symptom relief. Families and communities provide the meaning, connection, and support that the dying and the grieving need.
Although we may avidly follow the daily Covid-19 mortality data, death is still taboo. But it doesn’t have to be, the conversation needn’t be difficult.
“I die, you die,” writes Kevin Toolis in his new book,, “but we still have a choice. Do we die alone in fear, lost among strangers? Or do we die within a community who hold us close and see, no matter how far from greatness, their own dying brother, their own dying sister, their own dying self, worthy too of the same respect, for being just human, just mortal, as we are?”
Seamus O'Mahony is a retired gastroenterologist and author of(2016). His new book, , will be published in March.