Deciding how to live out your final days
An Advanced Care Directive, or a living will, allows us to make decisions now about our future healthcare, says Margaret Jennings
IT may be an issue we avoid thinking about too much, and it certainly isn’t a chirpy dinner party conversation topic, but underneath the surface often lurks the fear— as we get into our later decades — that we may be unable to make choices about our end-of-life healthcare, due to incapacity.
Over the past 50 years medicine has advanced at such an amazing rate that we have developed an ability to resist and postpone death in many new and complicated ways, says Professor Willie Molloy, geriatrician and chair in clinical gerontology at University College Cork.
“Healthcare professionals are stuck with such policies that they have to treat people no matter what. All these people are dying and the policy says everybody has to have CPR,” he says.
But what would you, the patient, want for yourself in such circumstances if you were competent? And do you ever spare a thought for those close to you who could be left in highly emotional circumstances with the responsibility to make decisions, due to your inability to communicate your desires?
While as a society we recognise the need to make a legal will, to outline our wishes about distribution of our possessions after death, the idea of expressing our healthcare desires in advance, is not too far removed then, from that concept.
Enter the Advance Care Directive (ACD), a type of Living Will, a written statement that we can make now — while we are able — about our healthcare, for a time in the future when we may no longer be able to communicate our desires.
Such an ACD, called Let me Decide, which features in an explanatory book of that name, has sold over 1 million copies globally and was produced after many years of research by the UCC professor.
“It’s an instructional directive which allows you to state in advance what treatments you want or don’t want, which doctors and family can follow. But you can also have a proxy directive, nominating a person with the authority to decide the kind of treatment you should receive in healthcare and personal care, like a power of attorney for healthcare, who can act on our behalf,” says Willie.
“It empowers the person to make their decisions and takes the family off the hook so the family are not stuck with these decisions, which is awful for the family. It can divide families; it can cause terrible fights.
“It also takes the healthcare professionals off the hook and the person’s death is better planned. In nursing homes, we have found that if you have the programme in, you are more likely to die with a family member if you have used Let Me Decide — and the care is fabulous.”
Ongoing research is being carried by UCC regarding the ADC in community hospitals and in homecare settings in Ireland, he says. At St Lukes Home in Cork where Let Me Decide has been available for residents since 2010, there has been an enthusiastic response. “Every single resident is offered it and it is their choice to accept Let Me Decide into their care plan or not to accept it,” says director of nursing there, Neil Mac Kay.
“Our current uptake is in the region of 90% and has remained consistent throughout. Let Me Decide enables the resident to retain autonomy in their decisions regarding their medical and nursing care whilst living in the nursing home and also if they wish to seek hospital care,” he tells Feelgood.
“On transfer to hospital care - if that is their choice, then a copy of the ACD is given to the resident to take with them to hospital and this further empowers and informs the receiving healthcare team of the resident’s decisions. It empowers the person to choose what and how they wish to receive treatment.”
The ADC values the person’s choice and decisions predominantly at the palliative stages of their lives, but equally, in all deci- sions the resident wishes to make in regards to their healthcare decisions and choices, adds Neil.
Meanwhile, the home care service provider, Home Instead Senior Care, is currently working close with UCC in piloting the Let Me Decide initiative in Tipperary.
“Our expertise has given us a deep understanding of the concerns of our growing ageing community, and ranked high among them is worry over what might happen to them if they are no longer able to make their own decisions over their treatment and care,” says Michael Wright, managing director of Home Instead Senior Care in Tipperary.
“With Let me Decide, clients have told me how comforting it is knowing decisions have been made in advance of time and that these decisions won’t be left to their adult children,” he says.
If the anticipated results emerge from the pilot programme then Home Instead Senior Care would like to see the programme rolled out nationwide, he added.
More information on the Advance Care Directive and the explanatory book Let Me Decide, which includes the directive, can be found at http://www.letmedecide.org/
HANDING OVER: Patients can also have a proxy directive, giving a named person the right to decide their treatment and healthcare plan.