Breaking the silence about death and dying

Irish people, it is commonly held, are good at death but not good at dying. This means that we celebrate death well with high attendance at funerals, wakes, commemorative events and so on, but we shirk away from talking about dying with family and friends, even when we know death is imminent.

A conference in Dublin on Thursday, Living and Dying Well in the Community, aims to break the silence about dying, particularly dying at home.

Organised by the Irish Hospice Foundation, it includes speakers such as Prof Mayur Lakhani, the chairman of the UK National Council for Palliative Care and Dying Matters Coalition, who will talk about how, after years of most people dying in hospitals in the UK, the tide is turning and more and more people are dying at home.

“At least 75 per cent of deaths can be anticipated. They are frail, older people with multiple conditions who will die naturally through ageing.

“We need doctors to talk to these patients about dying, where they would like to be looked after, whether they want to go into intensive care, and who they would like to make decisions for them if they can’t,” says Lakhani.

Overmedicalised
In Ireland, there is a similar move to reduce the numbers of people dying in hospital, not least because four out of five people diagnosed with a serious illness say they would prefer to die at home.

According to our latest figures, about 40 per cent of people die in an acute hospital, 20 per cent in a public or private nursing home and 25 per cent die in their own beds.

And, while it is widely acknowledged that some people need specialist medical care in a hospital or hospice in their final days, it is also known that some people are overmedicalised in the last year of their lives, receiving complicated interventions and being resuscitated when their chances of survival are very low.

“Death has been overmedicalised but the pendulum is swinging back and the palliative-care movement is helping that.

“Some people will require specialist intervention and will not be able to stay at home. For some relatives, it will be too traumatic or not practical to bring a person home to die, but we must remember that most people don’t die in uncontrolled pain now.

"They die relatively comfortably and, for a lot of people, death goes smoothly and is a gradual, gentle dwindling," says Dr Paul Gregan, chairman of the Primary Palliative Care Steering Committee, who will also address the conference.

“We know that 80 per cent of people with end-stage disease in Ireland want to die at home. And, in the last year of their lives, the majority of their care is provided by a GP and a primary-care team so we must provide supports for these healthcare professionals to manage the care of our most vulnerable patients when they need it most,” says Gregan.

Some of the GP supports Gregan refers to are out-of-hours palliative medicines (often not routinely available in pharmacies), out-of-hours advice from a specialist in palliative care (available only when there is a hospice close by) and medical cards for terminally ill patients that give them access to therapies and specialised equipment for their homes.

Recent moves by the HSE to extend availability of medical cards to terminally ill patients beyond six months have been welcomed by the Irish College of General Practitioners and the Irish Hospice Foundation alike.

Night nurses
The Irish Hospice Foundation also fundraises for Irish Cancer Society night nurses for people who are dying of illnesses other than cancer. Currently, these are the only free out-of-hours night nurse services available for the terminally ill. And a standard out-of-hours palliative care handover form is being piloted in Cork and Kerry.

This document requires GPs to inform out-of-hours doctors about the specific needs of terminally ill patients in their practice.

And, while the move to bring death and dying back into the community is undoubtedly driven by economics – ageing population and sky-rocketing hospital budgets unable to cope with increased costs of caring for the dying – the concept is arguably good for society only if the community supports are in place to support the dying and, later, their bereaved loved ones.

For this to happen, we need to talk more about dying.

Prof Lakhani of the Dying Matters Coalition says, “We are less exposed to death and dying than previous generations. Many conditions that once killed are now treatable and life expectancy is increasing.

“In the UK, we have found that fewer than one-third of the public have asked a family member about their end-of-life wishes, or talked about their own. Our ambition in the Dying Matters Coalition is to reduce the fear of dying, to encourage people to discuss end-of-life wishes and to increase knowledge and awareness of palliative care.”

According to Lakhani, when people are dying, their biggest fears are being a burden on their family, dying in pain or dying alone.

“Doctors need to initiate earlier conversations with people with advancing disease so that it is not left until the patient is too ill or does not have the capacity to make decisions. The time to plan is when you are well. It gives you a chance to put your affairs in order, manage your relationships, to say “Sorry,” or “I love you.” In Ireland, the Advanced Healthcare Directive, which is currently being drafted, will give people choices about what medical interventions they don’t want during terminal illness.

Death plan
Planning for more people to die at home, or in a nursing home, will also require more non-medical conversations about death and dying. The idea of making a death plan might seem morbid but, in fact, it is something some people consider. Similarly, so-called death cafes are opening up as places where people can go to discuss terminal illness, dying and planning for a good death.

The Think Ahead initiative of the Forum on End of Life in Ireland, thinkahead.ie, which will also be discussed at the conference, encourages people to talk about dying. In many ways it is only when dying and death are again considered part of the natural cycle of life that people will fully re-embrace the idea of dying at home.

Jim Rhatigan of the Milford Care Centre in Limerick will speak about the Compassionate Communities Project, which offers social, emotional and practical support to people living with a serious life-threatening illness, facing loss or experiencing bereavement.

Understanding that compassionate care involves everyone in the community, as well as doctors, is perhaps the key to the whole issue.

Living and Dying Well in the Community: The Future of Primary Palliative Care in Ireland takes place in the Ashling Hotel, Dublin, on Thursday. See hospicefoundation.ie