Unavoidable truths: let’s talk about death
Most of us don’t like to discuss it, and up to 50 per cent of Irish adults haven’t made a will. But, with advance care directives soon to become law, dying is a hot topic
Photograph: Getty Images
Frances O’Rourke, right, and her late sister, Mary
It was three days before I was due to fly home that my sister’s husband broached the subject of the funeral. We had researched the options beforehand – in Canada, you don’t have an automatic ritual to slip into, you have many choices. My sister wanted a religious service, but was happy with the suggestion that the whole event take place in a funeral home. In North America, the wake the day before and the service can all be held in a funeral home, where there’s plenty of room for parking and people don’t have to leave for the after-party. She had only one stipulation: her friends must be offered drink as well as food.
She thought – we thought – that organising the funeral would be months away. Just over a week later, I was back in Canada, negotiating with the funeral home over drink. They didn’t have a licence, but if we handled and served it, that would be fine. And so Mary, my baby sister, who turned 59 the day she died, had a good send-off on a hot June afternoon in Ottawa.
Even though Mary knew that time was running out – she had metastatic breast cancer in the lung – she really wasn’t ready to die. In May, her doctors prescribed radiation to tackle cancer that had spread to the brain, and, she said, “They must reckon I’ll at least get summer”. Still, she died at home, as she had wanted, with the help of daily visits from the hospice care team, frequent visits from family and friends, and in the care of a husband who minded her patiently and lovingly to the very last.
The death of a loved one
By a certain age, many, probably most of us, have experienced the death of someone close. We know the questions that can arise: is there some kind of medical treatment we would refuse? Would our mother have wanted X or Y procedure carried out? Yet many, probably most, of us still won’t, can’t or don’t think or talk about it. It’s seen as morbid or superstitious. We fear that talking about death may bring it closer. Forty to 50 per cent of Irish adults haven’t even made a will.
Yet death and dying is a hot topic. A year ago, a Londoner held a “death cafe”, inviting strangers to meet for cake, coffee and a chat about death (see panel). The Government will soon legislate to give advance care directives – a living will – legal force; the public is being invited to make submissions by March 7th. Advance care directives are statements made by adults about the type and extent of medical treatments they might and might not want at a point when they might be incapable of making a decision themselves.
Pragmatic or morbid?
Niamh Walker, a retired Dubliner who created her own directive five years ago, says that a lot of us, half jokingly, say, ‘Oh, shoot me if I get Alzheimer’s’. But it
is irresponsible not to provide family and friends with some information about what you would actually like to happen in that event, she believes. “I’m not trying to control what happens, I’m just putting down some markers – provide some guidance,” she says. She was prompted to do it “after seeing some people having medical interventions in hospital that kept them going, but miserable”. She has revised it once since drawing it up, and may do so again.
Some friends and family are comfortable that she has done this, others think it morbid. Her directive expresses her preference for the kind of medical treatment she would want in certain circumstances. As for her funeral, she says, “that’s for the people left behind – they can do whatever they want”. Friends react differently when she tells them about her directive, but some, especially those who live alone – “where there isn’t someone to hand who’ll know your wishes and can interpret on your behalf” – say they have given the idea a lot of thought.
She agrees that most of us would be very tentative talking about “dying matters” to someone who is very ill. She believes having an advance care directive could help in this circumstance, enabling someone to ask: “Have your wishes changed?”
It’s hard to argue with those who are urging us all to look ahead while we’re still reasonably fit and well. Raising the topic with a family member or friend after a diagnosis of a life-threatening illness is likely to be a lot more difficult.
Dr Paul D’Alton, clinical psychologist at St Vincent’s Hospital, Dublin, says that “pop psychology myths that tell people to ‘think positive’ and ‘battle on’ often add further suffering to the unavoidable pain of death and dying”. People have a right to have conversations about death – and not to have them, he says. But he maintains that people will die with less fear, less anxiety, when we can approach our mortality.
The hospice movement
The Irish Hospice Foundation has been driving major changes in the way we approach dying matters. Its document Think Ahead , described as an end-of-life planning tool, grew from a series of public meetings held all over the country in 2009 and 2010, and it’s a model of plain talking.
It is now widely recognised that hospitals’ focus on cure can marginalise those who need care; the foundation’s “hospice in hospitals” campaign has succeeded in getting many hospitals to provide a quiet room where a dying patient and his or her family can spend final hours. Palliative care – care for patients who cannot be cured but who may yet live for years – is more advanced and much more widely available, in and out of hospitals. It should ensure that virtually all patients with serious illness die without needless suffering, says Dr Paul Cregan, consultant in palliative medicine.
Kildare GP Dr Brendan O’Shea, a director of the TCD/HSE GP training scheme, has just stepped down as medical director of K-Doc, a Kildare GP out-of-hours co-operative. Co-op members frequently found it was difficult to make good decisions in an acute out-of-hours situation in the absence of documented records of what a patient wanted. The GP training scheme decided to offer the Think Ahead package to patients in the months after they had received a significant, if non life-threatening diagnosis. “We found they were not upset by it. Most found it easy to use and very effective at causing them to discuss these issues with their families.”
He says there is wide recognition that people may well change their minds about future care and that GPs should ask patients regularly – perhaps every two years – if they are still comfortable with what they have decided.
It is already of practical help: “If I am called to a nursing home out of hours and the patient has an Advanced Care Directive in their file, having consulted with the patient and the family on the spot, I will be comfortable in providing comfort care for that patient in the nursing home and will not feel obliged, as I might have in the past, in transferring that patient to the casualty department of a hospital.
“We’re encouraging patients to make the running on this – they can just download the form on thinkahead.ie, either on their 50th birthday or after the diagnosis of an illness likely to impact on their longevity. The time to do this is when they’re clinically stable, not when there’s an anaesthetist hovering over ready to intubate.”
Surveys show that most of us want to die at home, but in practice most of us die in hospitals or nursing homes. We have our own ideas about a good death: for most, it’s a quiet, peaceful one, going gently into that good night, whether at home or in hospital, with loved ones gathered around and time to say goodbye. Some of us might favour the no-warning death, possibly good for the deceased, although emphatically not for his or her loved ones.
Personal experience tells me that it’s probably a good idea to have a black sense of humour too, not just to cope with the inevitable indignities that occur when your body is breaking down but also with the truth that no matter how much we plan, we may well be surprised by death.
Irish people handle death itself well: our rituals, known and understood by most, serve us admirably. We aren’t embarrassed by open coffins, we flock to funerals to support the bereaved, we know how to celebrate the deceased person. But dying? That’s a different matter.
For more information see hospicefoundation.ie ; thinkahead.ie ; iapc.ie (Irish Association of Palliative Medicine); dohc.ie/consultations ; dyingmatters.org
DEATH CAFES : A NICE CUP OF TEA AND A CHAT ABOUT DYING
Death Cafes started in London three years ago and have since spread across Europe, North America and Australasia. At a Death Cafe people gather to eat cake, drink tea and discuss death. Jon Underwood, a council worker from east London, held the first British Death Cafe in his own home in 2011, inspired by the work of Bernard Crettaz, who had established such cafes in France and Switzerland. His first drew 33 people who talked about plans for their own death, their experiences of death, or just to learn more about the subject.
An invitation to one in New York reads: “Join us for an informal gathering where you can safely share with others your questions, concerns and/or experiences regarding any of the many aspects of death – our birthright.”
The cafes are growing in popularity, especially among women, who Underwood says are keener to talk about death. In January 2013 there were 50, and now there are over 500. Underwood speculates that the increase in interest “may be due to the baby boomer generation, which make up a significant proportion of our attendees and who are now, demographically speaking, beginning to die in greater numbers”.
Underwood says one of the best things about the Death Cafe is the quality of the dialogue. “When talking about death, people just tend to say it as it is, without artifice or pretension, and it makes for a fantastic conversation.”
For more information – and a guide to how to hold your own, see deathcafe.com