A plan for the future is important for end-of-life care
WHAT if an elderly loved one was seriously ill, on the brink of death? What if your family was split, torn between allowing the patient to pass away — or insisting on every last ditch effort, from tube feeding to CPR (cardio-pulmonary Resuscitation), to prolong life, regardless of the quality.
“Six months later when the parent dies, members of the family can turn around and say ‘What the hell were we doing? We dragged out mother’s death.’ There can be guilt forever in a situation like that,” says UCC Professor William Molloy of the Centre for Gerontology and Rehabilitation.
Prof Molloy is the author of the first Irish edition of Let Me Decide, the health and personal care directive that enables a person to record their healthcare wishes in advance. This means that their hopes can be respected should a time ever come when the person can no longer communicate or decide for themselves. The booklet is a concise guide to the issues around the concept of an advance care directive (ACD). It’s timely, given that legislation on ACDs is due to be rolled out in Ireland in the near future.
Prof Molloy is heading up a pilot study in ACDs involving St Luke’s Nursing Home in Mahon, Cork; Haven Bay Nursing Home in Kinsale, Co Cork; and St Colambanus Nursing Home in Killarney. The study is funded by the Irish Hospice Foundation and Atlantic Philanthropies. In co-operation with the study, over 50% of the residents of these three Munster nursing homes have signed up to some form of advance care planning, made with relatives and health care professionals.
In the population as a whole, less than 5% of people have an advance care plan, says Prof Molloy. “We’re not familiar with advance care plans in our society, but we’re trying to change that. With legislation on the way this year hopefully, we’re offering the Let Me Decide booklet to the government for free.”
Prof Molloy has worked in memory clinics, and his area of speciality is Alzheimer’s disease. “I get people coming into me with early memory loss. I see them five, six or seven years later in a nursing home. When they’re transferred to an emergency department, their family makes decisions for them. People didn’t have any way of letting their wishes be known. So I’ve been building on research into ACDs as a result.”
There are half a million people in this country aged over 65, says Prof Molloy. By 2050, this will rise to 1.5m. “There are going to be a lot more older people and a lot less younger people to take care of them. What we have now are the baby boomers in the middle paying for children and older adults. But as the boomers move up, there’s very few coming behind them with smaller families being the norm. It’s a big problem for publicly-funded health systems.”
As people live longer, the number of people suffering from dementia will increase. “I would suggest that 50% of deaths will happen in nursing homes by 2050. Traditionally, the hospices have dealt with cancer. At the moment, about 25% of people die in nursing homes with 5% dying in hospices. Despite the fact that nursing homes deal with more deaths than hospices, we don’t have formal palliative care in nursing homes.”
In response to this, Prof Molloy’s research team is developing an online educational programme on palliative care. Part of it involves health care professionals talking to the bereaved three months after the death of a family member about the quality of the palliative care. The co-ordinator of the team, Dr Nicola Cornally, says introducing ACDs is opening up channels of communication. “It’s something they wanted to talk about but were holding back, feeling they couldn’t talk about death. Studies have shown that most people would not opt for CPR.”
Prof Molloy says he and his team are opposed to euthanasia. “Everything we’re proposing is legal. It’s palliative care. It’s approved by the Catholic Church and all the major churches. I think euthanasia is a huge mistake. But it’s starting to creep in in Europe. If you have a life-threatening illness and want palliative care and not to be resuscitated, you’re not saying ‘Kill me’.” Dr Cornally says the Let Me Decide booklet only looks at what people can refuse in terms of treatment. “You can’t ask for assisted suicide or euthanasia.”
People are confused about ACDs. “The problem is that people call them ‘living wills’ and naturally assume that they have something to do with solicitors. But really, solicitors are not qualified to draw up an ACD. It’s something you need to do with your family doctor who knows about your health issues. We would say that you should keep ACDs simple — and keep them within the health care system.”
Catherine McCarthy, aged 87, is a resident at Haven Bay Nursing Home in Kinsale.
“I had a bit of a stroke, so they say,” says this former pharmacist. Her husband is in another nursing home. She has three children and two grand children.
Having stated her wishes about her end-of-life care with her children and a health care professional, McCarthy admits that planning ahead is not something she ever envisaged. “You can only plan a certain amount. I never made plans before, because like everyone, I never thought I’d get old.” She says the study she is involved with “is a good idea. It will make people more aware of the decisions they have to make”.
- Familiarise yourself with the terminology. The Let Me Decide booklet (€10) may help.
- Make sure your proxy (the family member entrusted by you) or proxies, as well as your health care professional, are working together using the defined terminology.
- Review yearly your directive with your GP.
- If, on review, you make no changes, just write ‘No Change’ on the chart and sign it and date it with your doctor.
- Update all copies of the directive and have everybody involved sign them.
- To purchase a copy of ‘Let Me Decide’ (€10), go to www.ucc.ie/en/cgr.
CONNECT WITH US TODAY
Be the first to know the latest news and updates
