Taboo or not taboo?

Posted by Michael Jarvis, onetime Manager of the Natural Death Centre

For very many people in the UK ‘death’ is a subject left unmentioned. If you are reading this then you are part of a minority. A minority, furthermore, who would generally like to see more public openness regarding dying, death and funerals. We know the benefits: peace of mind from discussing one’s individual wishes, removing an unnecessary burden of decision-making from the bereaved, possible financial advantages from advance planning, and so on. 

Death seems to be a taboo subject for many, but does the general reticence to mention death, let alone discuss it, make it so?  We need to understand how it this has come to prominence. It wasn’t around in the time of our Victorian forebears despite their sensibilities in many areas (skirts on piano legs, for example). Rather, it was paraded with openness in art and literature and surrounded by a great deal of etiquette and ritual. Type ‘Jay’s of Regent St’ into a search engine to see details of a whole store devoted to mourning dress and accessories. So what happened in the last century to bring about such a seismic change? 

First, war and a pandemic. The First World War brought death on such a massive scale that repatriation was not feasible and Victorian and Edwardian notions of mourning were unsustainable. The scale of loss of life was immediately surpassed as a result of a global ‘flu pandemic and in the aftermath ‘death’ as a subject began to be swept under the carpet.  

Second, and there’s a degree of irony here, better living. In the 20’s and 30’s homes fit for heroes might have been a bit thin on the ground, but improvements in medicine and sanitation brought about a significant rise in life expectancy which had been less than 50 years for both men and women in 1900. Conversations which began “We should talk about what happens when I die” would increasingly be answered by “Don’t be silly, you’ve got years ahead of you!” 

Third, and perhaps most relevant, is the simple fact that death is now largely institutionalised. Death happened in Victorian homes; now the event is most likely to occur in a hospital, outside the home and away from friends and family. It is most likely too that they will not see the body which will be removed by undertakers. Undertakers themselves would prefer the use of the term ‘funeral directors’, another example of the dead being at a distance from the family.  

Taboo? Perhaps on reflection it’s not so much that death is a forbidden topic as that for many people death happens to others, elsewhere, and is dealt with by someone else. And here’s the rub, denying the existence of death is unhealthy. Unless we can change that mindset we run the risk of creating psychological problems and we lose control: control of that which we wish for ourselves, that which will ease the pain of bereavement and even lessen the likelihood of family disputes and squabbles.  

Put bluntly it is my view that we would all be the  better if more people felt able to have conversations about death and its various implications. Projects such as the Good Funeral Guide and the Natural Death Centre have done and are doing sterling work but there’s a lot that individuals could do. Think of all the clubs and societies in your area – from the W.I. to Rotary via Probus, Lions, Mothers’ Union and countless others, the one thing they have in common is that from time to time they struggle to find speakers. Offer your services. Challenge them to put death on the agenda.


Time’s up, take yourself out

A theme that we like to explore on this blog is the way in which longevity has reconfigured the landscape of dying. The blessing of long life has its downside: protracted decline. We are likely to linger longer, much longer, than our forebears. There’s a physical cost in chronic illness and possibly, also, mental enfeeblement. There’s the emotional cost to the elderly and their families. And then there’s the financial cost, which the government has wrestled with and now kicked deftly into the long grass.

In the Sunday Times Minette Marrin wrestled with it, too. I’ll have to quote a lot of it because the ST website is paywalled. She suggests some interesting solutions:

Last Thursday the Office for Budget Responsibility (OBR) announced in a chilling report that the escalating costs of an ageing population will mean yet more national austerity. Pointing out that the proportion of people over 65, who now make up 17% of the population, will rise to 26% by 2061, it estimates many increased costs, in care of the elderly, health and pensions, amounting to an added £80 billion a year in today’s money.

In the next 20 years, the number of people over 70 is set to rise by 50%, reaching nearly 10m, according to the Office for National Statistics.

The OBR states that Britain’s public spending will be “clearly unsustainable” over the next 50 years, despite the spending cuts. So, far from care for the elderly rising above today’s inadequate standards, it is almost certain to fall further below them. There’s no money now and in future there’s going to be even less. 

Universal bus passes (which cost £1 billion a year), winter fuel allowances (£2 billion) and free television licences must go. 

Everyone must accept that their savings, including their homes, may have to be spent on paying for care in old age. There’s no universal right to leave one’s property to one’s children.

Taxes of all kinds must rise hugely, or else there will have to be a large hypothecated tax upon people reaching old age. Services to old people must be reduced … Health service care must be rationed for the very old. Palliative care of every kind should be available, but not ambitious treatments.

There should be fewer old people. I’ve often felt the best thing one can do for one’s children is to die before real infirmity sets in. The taboo against deliberately shuffling off this mortal coil, as people did in other cultures in the interests of younger people, is wrong. Most people say they never want to be a burden to others in old age; it would be good if more of us felt able to prove we mean it, by taking a timely and pleasant walk up the snowy mountain. Especially since there’s no money left. [Our bold]


Doctors need to grieve, too

There’s an interesting piece in the New York Times here about the emotional difficulties doctors experience when working with people who are going to die. People often characterise doctors as cold and uncaring when, in fact, they may simply not be coping:

We found that oncologists struggled to manage their feelings of grief with the detachment they felt was necessary to do their job. More than half of our participants reported feelings of failure, self-doubt, sadness and powerlessness as part of their grief experience, and a third talked about feelings of guilt, loss of sleep and crying.

Our study indicated that grief in the medical context is considered shameful and unprofessional. Even though participants wrestled with feelings of grief, they hid them from others because showing emotion was considered a sign of weakness. In fact, many remarked that our interview was the first time they had been asked these questions or spoken about these emotions at all.

Even more distressing, half our participants reported that their discomfort with their grief over patient loss could affect their treatment decisions with subsequent patients — leading them, for instance, to provide more aggressive chemotherapy, to put a patient in a clinical trial, or to recommend further surgery when palliative care might be a better option. 

Unease with losing patients also affected the doctors’ ability to communicate about end-of-life issues with patients and their families. Half of our participants said they distanced themselves and withdrew from patients as the patients got closer to dying. This meant fewer visits in the hospital, fewer bedside visits and less overall effort directed toward the dying patient.

Oncologists are not trained to deal with their own grief, and they need to be. In addition to providing such training, we need to normalize death and grief as a natural part of life, especially in medical settings.

To improve the quality of end-of-life care for patients and their families, we also need to improve the quality of life of their physicians, by making space for them to grieve like everyone else.

ADRTs — who does and who doesn’t

From a letter in the New York Times:

Older adults who do not formally convey their treatment preferences to loved ones create a distressing situation in which children and spouses must make emotionally draining (and costly) decisions about whether to continue or stop life-extending treatment.

As Ms. Jacoby points out, one obstacle to planning is a reluctance to discuss and confront one’s own demise. Yet my research, based on interviews with more than 7,500 Americans, points to another important obstacle: money. Many people complete their advance directives as part of their estate planning; the living will is written up along with one’s will and other documents to protect one’s assets.

But many people with few financial assets to protect do not take the important first step that often kicks off the advance care planning process. People in the lowest quartile of assets are only half as likely as those at the top of the assets ladder to have a living will, to appoint a health care proxy or to discuss their treatment preferences with loved ones.