In Ireland, we have a reputation for being good around death. We turn out in vast numbers at funerals and we speak easily about people who have just died. But how good are we about talking about our preferences for care in advance of our own deaths?
Many people will have witnessed unnecessary and sometimes traumatic life-saving interventions on loved ones who may have slipped away more naturally had they stipulated in advance that they didn’t want to be resuscitated or transferred to an acute hospital in their final hours.
On Tuesday, the Irish Hospice Foundation launched its updated advance care planning toolkit, Think Ahead. It includes a personal wishes and care plan booklet (where you can record whether you would prefer to die at home, in hospital or in a hospice, and even specify what type of funeral you would like to have), an Advance Healthcare Directive booklet (where you can stipulate what treatment you would like to refuse or request and name a healthcare advocate to act on your behalf if you are unable to make these decisions yourself) and a medical summary form (with details of the above preferences for your medical file).
People trust their GPs and getting a paper document allows people to engage with these issues
Dr Brendan O’Shea, who gave the Dún Laoghaire TEDx talk on the seven steps towards a good death in 2021, says that GPs are well placed to initiate end-of-life conversations with their patients. He gives the Think Ahead documents to some of his older patients. “People trust their GPs and getting a paper document allows people to engage with these issues,” says the Kildare-based GP and assistance adjuvant professor in primary care and public health at Trinity College Dublin.
Dr O’Shea also believes it’s important to have end-of-life discussions before someone is too sick, too frail or too anxious due to a progressive medical condition or impaired cognitive function due to dementia.
“People often don’t get around to making Advance Healthcare Directives in the pre-terminal phase when the probability of over-medicalisation is greater or the inappropriate transfer to a casualty department or inappropriate resuscitation,” says Dr O’Shea.
But if the person stipulates in a written Advance Healthcare Directive that they don’t want to be transferred to hospital in their dying moments, that default option of transferring a patient to an acute hospital won’t happen.
And writing an Advance Healthcare Directive is simpler than it sounds. In fact, although it is a legal document — as part of the Assisted Decision-Making (Capacity) Act, 2015 — it can be written in plain English but must be signed in front of two witnesses to be valid. The revised Think Ahead documents provide guidance on doing so.
Áine Flynn works for the Decision Support Service which is a new State service that provides information to the public on all aspects of the Assisted Decision-Making (Capacity) Act, including Advance Healthcare Directives and designated healthcare representatives. “You can write an Advance Healthcare Directive five minutes before going into an operating theatre or you can write it well in advance with precise instructions on the type of healthcare you refuse to have,” says Flynn.
You can also request specific treatment in your Advance Healthcare Directive, although the clinical judgment of the medical team treating you can override these requests. And while your family might know your exact preferences, they don’t have legal powers to override medical decisions if the person’s wishes are not written down in an Advance Healthcare Directive.
Talking about dying can be hard, but talking about it can making dying and death less fear-filled and a better experience for everyone
Kevin and Lyla Monaghan from Newbridge, Co Kildare, made the decision to specify the type of care they would prefer to receive when close to death. “I don’t want to be put on a mechanical ventilator because I don’t want to prolong the situation by being kept alive if I’m not going to get better,” says Kevin Monaghan, an 81-year-old retired builder who is in good health.
Lyla Monaghan, a sprightly 75-year-old, says she would only like to be administered CPR if her doctor believes it would be medically beneficial. “We have made our wills and told our six children what our wishes are and we have filled out the Think Ahead documents. It’s important to map out what you want for those who are left behind.”
Valerie Smith from the Irish Hospice Foundation says: “Talking about dying can be hard, but talking about it can making dying and death less fear-filled and a better experience for everyone.”