'Do not resuscitate': Ide’s plea for wishes to be respected
Each night as Ide Cantwell- Barnes goes to bed, she carefully places a chair on its side in her hall so it blocks the entranceway.
Pinned to that chair and protected in a plastic pocket is one of many photocopies of her prized Advanced Healthcare Directive (AHD) or ‘living will’.
Another copy of the AHD has been blown up to A3 size and pinned to the wall directly opposite her front door. Around each of her wrists, the 80-year-old wears a bright red ‘do not resuscitate’ plastic wristband.
Three copies of her AHD have also been set to the CEO of the Limerick Hospital Group, Professor Colette Cowen.
Ide has a degenerating sternum, meaning that if, in the event of a medical emergency, cardiopulmonary resuscitation (CPR) was performed on her chest, she would suffer agonising pain as her chest would collapse.
Her AHD is a document, outlining how if due to sudden ill health, she is unable to communicate or lacks capacity, she wants it known that she does not want resuscitation. It is signed by three medical doctors and names her decision- making representative, who can make decisions on her behalf if she lacks capacity.
Ms Cantwell-Barnes used the draft AHD, drawn up by the Irish Hospice Foundation in its ‘Think Ahead’ booklet, to make her wishes known.
“I just want to be guaranteed that I won’t be hammered to hell and so I have done everything I possibly can to make sure that my wishes are registered in advance. If paramedics have to enter my house in the case of an emergency, they would have to trip over my AHD to get through to me,” says Ide.
“However, I am still not guaranteed that basic certainty as while the Assisted Decision Making (Capacity) Act was signed into law by President Higgins in December last year, this act doesn’t include a specific commencement date bringing it into effect.
“Its various parts, and most importantly part eight, which deals with advanced healthcare directives, still haven’t been commenced by the Department of Justice in consultation with the Department of Health.”
Because these parts of the act haven’t been commenced, AHDs are valid in common law, by precedent and custom, but are not governed by a statutory framework. Until the act is fully enacted, Ireland’s overriding legal response to capacity continues to be governed by the outdated 1871 Lunacy Regulation (Ireland) Act.
Age Action Ireland has long campaigned for a regulatory framework around AHDs.
Ms Cantwell-Barnes, who lives in Croom, Co Limerick says: “It would be enormously beneficial for me if I there was some timetable for when this act will be commenced so I can have the peace of mind of knowing my wishes will be respected.”
The Department of Justice has said commencement is taking place on a phased basis.
A high-level steering group was set up in June this year to oversee the establishment and commissioning of the Decision Support Service.
Work is also to begin shortly on devising a code of practice governing AHDs.
Analysis: ‘I want to be a happy camper when I leave this world’
Many issues must be resolved before the Assisted Decision Making (Capacity) Act is commenced, writes
AS WITH most medico-legal issues, the argument around the commencement of the Assisted Decision Making (Capacity) Act is complicated.
Mervyn Taylor, the manager of Sage, the support and advocacy group for older people, said it could take three years before the bill — most specifically, part 8 which deals with Advance Healthcare Directives (AHD) — becomes law because of the many budgetary, legal and technical issues that need to be clarified.
“We need to get it right,” he warns, and pivotal to this is ensuring a proper budget for the Decision Support Service, run by the Mental Health Commission, which will oversee the register of AHDs and will offer support to decision makers.
Budget is also the most immediate concern for the Mental Health Commission. When asked about a likely timetable for commencement of part 8, a MHC spokesman said it is working with the Departments of Health and Justice “to secure resources to commence the scoping out of a project plan to address the pre-implementation and implementation of the act”.
“The commission is anxious to resolve the issue of resources quickly so that the DSS can be established at the earliest opportunity. The board of the commission has requested a meeting with the Department to Health to progress this,” she said.
Then, once some agreement around a budget is made, there is a raft of technical, legal and medico-legal issues that must be ironed out before advanced health directives or living wills can exist within a full legal framework.
According to the Department of Health, a multidisciplinary working group will begin work, once it is established, on drawing up a code of practice around advanced health directives, on how they operate “on the ground” for the person who makes the directive, their family, health and social care professionals and the person’s designated healthcare representative, a person nominated in advance with making decisions on their behalf should they be unable to.
Once this working group has completed its work on AHDs, it will submit its recommendations to the Director of the Decision Support Service, who has yet to be appointed. And it’s only then advanced health directives can be “legally commenced”.
It’s this technical and legal detail around how AHDs will work that is crucial, according to Dr Eilionóir O’Flynn, deputy director of the Centre for Disability Law and Policy at NUI Galway and an expert in supported decision making.
“There is a real need for AHDs to be recognised as legally binding. You can take all the precautions including informing doctors and family of your wishes but you don’t have that full legal certainty that your wishes will be respected,” she said.
“For example, if you refuse certain medication or treatment in your AHD, there is a difficulty if medical staff can’t find out your wishes because you do not have an AHD with you.”
Key to the new capacity legislation is the public advanced health directives register which will be set up by the director of support services. The directive maker can send his document to the register and it can then be “securely accessed” by the necessary professionals, if needs be.
“We have yet to decide who can access this register and we must respect data protection laws. Can emergency medical technician staff access this information? Where can people find the information? Are they duty bound to find it if it exists? What happens if they are not aware of the AHD? This detail has to be fully worked out before we can legally commence this,” Dr O’Flynn said.
Patient records aren’t digitised in this country meaning that doctors can’t readily see your medical history on a centralised IT system.
Dr O’Flynn said the AHD register “raises issues again around the need to digitise patient records, to have something like a PPS for healthcare as this would make the process far more streamlined. But again, this raises issues around security and data protection,” she said.
The Assisted Decision Making (Capacity) Act is a groundbreaking piece of legislation for this country that stretches far beyond advanced health directives. Central to it is respecting the right of people to make choices for themselves and there is a statutory presumption of capacity, unless there is evidence to the contrary.
Age Action has long sought a legal framework around AHDs, especially when nursing home inspections have revealed ‘do not resuscitate’ orders being written up by doctors without family being consulted.
Anecdotes also abound about DNRs being cast aside in nursing homes when medical and nursing staff feel compromised on medical and ethical grounds. Will a family sue them if they follow the patient’s expressed wishes?
Dr O’Flynn says that at present, some health professionals can see advanced health directives as “potentially dangerous” when there aren’t clear medical and legal guidelines in place around how to interprete them.
“AHDs are comforting for patients but challenging for practitioners without the necessary clear guidelines in place,” she said.
Both Taylor and O’Flynn would like to see tags or bracelets for AHD holders so that health professionals will quickly see that they have expressed their wishes in advance.
“In the case of Ide Cantwell-Barnes, medical staff will most likely agree with her decision and she has taken all practical precautions to ensure that her wishes are known.
“But what about the more complex case for instance where somebody refuses all forms of psychiatric medication and ECT as they know what doesn’t suit them.
“This might be unsatisfactory from other professional people’s perspective and so issues can then arise around involuntary detention under the Mental Health Act,” says O’Flynn.
Ide Cantwell-Barnes says she is fully prepared to “get a temporary tattoo and put it on my forehead every day if that’s what it would take” to ensure her wishes are known and respected.
“I just want to be a happy camper when I leave this world. There are numerous databases in place around the microchipping of animals in this country yet nothing for humans who want to make decisions about their long term care.
“As there isn’t a timetable in place for when the Assisted Decision Making Act will be commenced, I believe there should be an interim register in place that would ensure nurses and emergency medicine personnel would not feel at risk by respecting our wishes,” she said.