It was just after this year's national Day of the Dead in Mexico—when I saw one of the more peaceful deaths I have witnessed in years. My work in palliative care involves meeting people at all stages of their diagnosis—and sometimes it means being there right at the end.
This elderly gentleman with multiple health conditions had become more sleepy over three days and then gently died on the Monday. He required no additional medications like morphine—no syringe driver to help with nausea or breathlessness. His family were with him.
Occasionally, he woke up and would say a reassuring word or two—or smile—and then drift off again. A few hours after he died, I spotted some Halloween decorations on the ward in the style of the decorated Mexican Día de los Muertos skulls—and it got me thinking about his death and also our general knowledge of dying and death. I wondered how many people have witnessed an ordinary death in the UK.
In Mexico, Day of the Dead is usually celebrated in some style in the first days of November—with thousands taking to the streets to remember, celebrate, and be festive. In this celebration, it is common to give gifts to friends such as candy sugar skulls—to share traditional pan de muerto—bread of the dead—with family and friends, and to write light-hearted and often irreverent verses in the form of mock epitaphs dedicated to friends and acquaintances—a literary form known as calaveras literarias.
But is humor and such a festive approach translatable into European attitudes towards death and dying—and why do people here know so little about what ordinary or natural dying looks like?
It has become apparent again in November's and December's discussions here in the UK about assisted dying—that ordinary deaths are far from everyone's agenda. Some politicians and commentators claim that there is a tidal wave of terrible deaths occurring—and that is why we need the law to change. England and Wales are on the cusp of legalizing medically assisted dying. I'm a German palliative care doctor living in Wales—so I have a few observations.
It may sound platitudinous—but we will, of course, all die one day—despite many attempts to resist it, most notably the "Don't Die" movement set up by American entrepreneur Bryan Johnson. Naturally, when you inhabit a world of illness and palliative care, there is sadness—but there's also quite a lot of room for light-heartedness, candor, and even the odd bit of black humor.
My patients with this approach are often the ones I can speak to most easily about how they envisage the next years, months, or weeks—and also how they would like their ordinary death to look. We even talk about ways to make the chances of an unpleasant death with burdensome symptoms much less likely.
Being born is something we all share in common—and is probably far more planned out and talked about. There are even detailed birth plans, outlining all types of scenarios. But death and dying plans? Those are rare. People think it's important when you ask them—but then would rather not do it themselves. In Britain, it's called "not in my back yard, thank you very much."
Opinion articles on the topic of death tend to handle it serenely, gingerly—and usually in "safe mode." Including this piece a few years ago, where the author imagines death scenarios they are "okay with"—including "Dinner with family, then meteor": Some Ways That I'm Okay Dying | The New Yorker.
This article stuck with me—as I often find a bit of humor goes a long way to introduce challenging topics. But can we only ever imagine catastrophic deaths when we let our imagination run wild?
At present, there are 8.1 billion people on this planet—all of us will die. In my experience as a foreign "import" from Germany, the British prefer to quickly proceed to talk about the weather whenever the topic of death and dying is brought up in conversation. But many of the deaths we see in palliative care are very peaceful.
The author Kathryn Mannix—herself a palliative care doctor—has described ordinary deaths as rather boring, in fact, and often uneventful. I sometimes recommend that relatives who want to spend the last few days with a loved one make sure they have books, newspapers, puzzles, and music on standby.
It is difficult—especially as a palliative care professional—to make too much light of this, given the distress and grief it causes so many. For this reason, it has been a topic that we tend to tuck away and only bring up when we absolutely have to. But just a few minutes before the meteor strikes is rather late.
Many will actively sabotage the conversation when, for instance, an elderly relative starts talking about what they would want in their final days—or even after they have died. "Don't talk like that, Hazel—you've got loads of time left. Be more POSITIVE! No need for that dreary talk."
Many people I meet at work remember snippets of conversations—even those microsecond exchanges that were swiftly interrupted due to not wishing to continue down this unpleasant line of thought.
Sometimes, when we see a patient who is no longer able to converse because they have a severe pneumonia and have also had a major stroke—and are desperately ill—the grandson will recall a brief conversation: "I remember once he said he had a phobia of being artificially fed for weeks, unable to speak—and that he'd want to be cremated, not buried. Is that useful?"
Even the briefest of conversations can reveal a lot about an individual's outlook and how they would want to be treated. These snippets are like gold dust to concerned health and social care professionals—hoping to do the right thing when the default is often invasive intervention.
Too much negativity here—especially from a doctor? Well, we in palliative care bring this topic up a lot—not to bring it about more quickly (death)—but to plan for what will happen to us all. Do you prefer to be at home, in a hospice, or in a hospital—or would you accept all three? Why not have a death plan—or a "future care plan"—if you want to prepare? A "Day of the Dead plan"—perhaps decorated with beautiful Mexican artwork. Like this, we ensure ordinary deaths can be coordinated well whenever that time may arrive—with medications on standby just in case issues come up.
Good palliative care can ensure that patients avoid unpleasant breathlessness, pain, nausea, and other symptoms. And the aforementioned death plans? In Wales, we have a host of forms and guidelines on how to write an advance and future care plan—in which you can specify requests and preferences.
Many people who fill these in feel a great sense of relief when their ideas are written on paper—either by themselves or by or with a healthcare professional who can provide guidance. Even if they merely state that the last hours should be spent together in a room with those close to the patient—with a backdrop of Echo & The Bunnymen playing gently.
But good palliative care is missing in the UK—and there are many areas that are underfunded. A lack of doctors and nurses in particular has made news stories of bad care at the end of life far more common. Sadly, this has meant that those who feel assisted dying is a solution to this chronic underfunding have been heard far more loudly in recent months.
We need a better understanding of ordinary deaths—and must not lose sight of such deaths. Medicine has vastly improved over the years—but has failed to provide us with answers, and it is perhaps sometimes too present in the care of the dying patient. We are about to make death even more clinical in the UK—but I am not sure that is wise.
Professor Mark Taubert is a Consultant in Palliative Medicine at Velindre University NHS Trust & Cardiff University School of Medicine, UK.
All views expressed are the author's own.
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