A FAMILY SIT around their terminally ill father's bed, unable to communicate with him and wondering if they are doing what he would have wished. A judge is roused in the middle of the night to sign an interlocutory injunction in an emergency where the ethical issues are unclear. A doctor with a patient who is mentally incapable of making a decision relies on the word of a "next of kin", choosing a rarely seen relative instead of a close friend who visits the patient almost daily, writes KATE HOLMQUIST
The way the Irish health care system frequently handles the ethics of critical care and the process of dying is “chaotic”, says Patricia T Rickard-Clarke, law reform commissioner and key author of the final report and draft legislation, Bioethics: Advance Care Directives, which was launched this week. “Currently there is no law to say that a patient’s views must be taken into account. A doctor can even go against a patient’s expressed wishes and say, ‘I’ll operate anyway because I’m saving this life and I know what’s best’.”
She quotes a statistic to illustrate the imbalance of power between doctor and patient: in one Irish study, 46 per cent of elderly patients who had the words “do not resuscitate” on their charts were not consulted, and in most cases these fateful words were written by relatively inexperienced junior doctors.
“The fact that you are 85 years old and ill does not mean that ‘do not resuscitate’ should automatically be on your chart,” says Rickard-Clarke. On the other hand, she adds, an elderly person should ultimately be allowed, if they choose, to die naturally and with dignity of what may be one of an ongoing series of heart attacks or bouts of pneumonia.
WHETHER A DEATHis "good" or "bad" in Ireland, where advanced care directives are unheard of, depends on the experience of a patient's health care team in sensitively managing terminal illness, and even on how much pressure a hospital is under. Most people would probably agree that "bad" means a doctor ignoring a patient's wishes or not even bothering to find out in the first place. Rickard-Clarke says that the new legislation on advance care directives (or living wills) is about moving away from this kind of paternalism, and towards giving adult patients "dignity and autonomy" by allowing them, in advance, to indicate in writing, or verbally to a healthcare professional or spiritual adviser, how they wish to be treated, or left untreated, in the event of critical illness.
For example, under the proposed legislation patients will be given the right to refuse treatment, such as chemotherapy, if it is unlikely to prolong life significantly. If you do not want to be rescuscitated after major trauma or a heart attack that leaves you brain dead, or in any situation where your quality of life thereafter is likely to be poor, then your wishes will have to be respected as long as you put them in writing in advance. But you will not have the right to refuse basic and palliative care, such as oral nutrition and hydration and pain relief.
Another major element of the legislation will be that people may appoint a proxy or grant an enduring power of attorney so that decisions can be made on their behalf. The proxy can be a family member, partner, friend, health care professional, spiritual adviser or any other trusted person. The proxy would be legally entitled to speak for you should you become incapable, but the medical team – at senior level – would still have a strong influence.
Choosing a proxy could be especially useful for people newly diagnosed with dementia who are still able to make decisions about the future, says Maurice O’Connell, chief executive of the Alzheimer’s Society. Family “aggro” can result when no one can agree on what a parent would have wanted. Appointing a proxy and/or granting an enduring power of attorney can prevent misunderstandings in the future. Next of kin currently have no rights under the law and will continue to have no rights under the new legislation unless they are made a proxy or have enduring power of attorney.
But the most groundbreaking aspect of the legislation is that it will give patients some feeling of control over what, currently, can be an authoritarian system, thereby improving quality of life. An as-yet-unpublished research document for the Hospice Friendly Hospitals Programme, seen by The Irish Times, quotes a health care professional saying: “I’ve yet to remember when a patient had full, you know, control over what they exactly wanted.”
For example, a young man who had been living with cancer was admitted to hospital for a test, but expressed the wish to go home straight afterwards. Due to hospital delays, disorganisation and a lack of regard for his wishes, one test led to another until he ended up living the final five weeks of his life in a hospital bed, instead of home where he wanted to be, if only for a few days. Under the proposed legislation, his wishes would have to be taken seriously.
Another example given in the report: a widowed father of teenagers was effectively brain-dead following an operation, and his children could see this. But instead of discussing the process of taking the man off life support with the children, the doctor took the man back to the operating theatre to prolong his life, thus keeping him alive for another 24 hours. The children felt that their father’s death had been taken completely out of their control. Under the proposed legislation, a parent anticipating such a situation would have been able to write that extraordinary measures should not be taken to prolong his life, and would have appointed a proxy to act on his behalf.
LIVING WILLS SEEMto hold out the hope that if you make a plan for a good death now, you won't have to worry about dying badly in the future – but is this realistic? How sure can you be that you won't want to be resuscitated until you're actually hanging on the brink? (Under the legislation, your words will be heeded only if you have put them in writing or have them on your medical chart.)
In real life, “99 per cent of the time” the opposite impulse is seen in victims of major head and spinal trauma, according to clinical neuropsychologist Dr Simone Carton, of the National Rehabilitation Hospital in Dublin, who says: “The will to live is very strong. We see an incredible thirst for life . . . Many people with spinal injuries in wheelchairs have better mental health and well-being than most ‘normal’ people.”
She fears that in the worst-case scenario under the legislation, a proxy might assume that a person would not want to be brought back from the verge of death if it meant they would be brain-damaged or in a wheelchair.
“And if I am in that situation myself, to what extent might my friends sway me to think that death is better?” she says. “It’s a bit of a trend that would worry me.”
Another health warning comes from Prof Allan Kellehear of the University of Bath, author of The Social History of Dying (Cambridge University Press), who was in Dublin this week to speak to the Irish Hospice Foundation’s forum on dying.
“What a person says about how they would like to die all depends on when you ask them,” he says. “Most people say ‘at home’, but two days before people die, the number who decide they want to die in hospital goes through the roof. When you are confronted with the reality of dying, things get really messy for everyone, including the patient.
“The idea of saying ‘do not resuscitate’ is good in principle, but it overlooks the fact that dying is living – so all the sneaky, trivial things still happen to you right up to the moment when you die. All I can say is that to ask people to consider making an advance care directive is a good thing because it makes people think, and I’m all for anything that encourages people to open the conversation about these important matters.”
How it's done elsewhere
THE US
Patients are likely to be asked by their doctors for written advanced care directives, sometimes in the form of a questionnaire. Since 1990, patients in any US health care institutions that are in receipt of federal funds must be told of their right to refuse life-sustaining treatment and advised to complete a directive, which must then be kept in their medical records. They may have a proxy or enduring power of attorney.
THE UK
Directives have legal standing following the high-profile case of Tony Bland, who was left in a persistent vegetative state at the age of 17 by the 1989 Hillsborough football disaster. Even prior to this legislation, a paralysed 19-year-old (“AK”) was allowed to have his ventilator switched off after indicating this wish by means of eyelid movements. In the “Re C” case, a man with schizophrenia who believed he was a renowned surgeon was allowed to refuse a leg amputation that doctors said was life-saving (he survived).
EUROPE
Legislation has been enacted in 20 Council of Europe member states. The Council of Europe’s own draft legislation is expected to be adopted and passed by the end of this year or early in 2010.
AUSTRALIA
In Queensland, before a person can refuse life-saving treatment, their health must be in decline and the person must have a terminal illness, be in a permanent vegetative state, be permanently unconscious or have an illness from which there is no reasonable prospect of recovery.
SINGAPORE
One of the two witnesses to the directive must be a medical practitioner and neither witness may be beneficiaries of the person’s estate or insurance.