It’s not fair it’s not our decision
By Rhonda Pryor*
In the work I do, I am constantly exposed to literature from Melbourne’s Austin Hospital claiming national prominence and best practice around issues of voluntary euthanasia…but there remain questions that Bill Silvester, Director of Austin’s Advanced Care Planning, and others struggle to answer.
Associate Professor Silvester has frequently argued that good palliative care, such as provided by the Austin, is the key to dying well and with dignity. In most situations this is probably correct: yet a few years ago, during the Wheeler Centre’s Euthanasia Should be Legalised Debate, Silvester conceded that, even with the best pain management in the world, occasionally palliative patients still experienced physical suffering.
Photo: Palliative care…WHO/Chris de Bode
In understanding suffering, we need to acknowledge its multifaceted nature. Suffering also includes the loss of physical and neurological control experienced with degenerative diseases such as dementia. Even with controlled pain relief, some individuals do not want to live their last months or days at the whim of others, in a state of dependence.
I have worked in management roles in the care industry for the past 25 years, including faith based, disability focused and community organisations. Unlike most in our society, I frequently witness death and consequently I am convinced our current attitudes and practices around death are driven by a form of societal denial and disengagement with the realities and relationships around dying.
It seems to me that many individuals who are not yet palliative, but who have a terminal illness want to die with control and dignity – they want to die as they have lived within their own value system. We do not argue that the State should dictate our values in respect to how we live our lives, unless what we do is harmful to others, nor should the State determine the values of how our lives end.
I have seen patients so sick that they are no longer able to articulate their values and associated needs and have witnessed a health and aged care system that does not provide adequate funding to employ enough skilled staff to respond to these needs in a timely manner. If most of us want to use the toilet, have a cup of coffee or get out of bed, we can at the moment we want to. We do not have to wait the legendary nurses “just a minute”, which stretches to an hour and sometimes two and often that’s far too late. Even if the waiting didn’t bother us, we might not choose for someone else to feed and wash us or change our over-filled continence pads. In these circumstances, unless they so wish, why should a person have to endure these cascading indignities before inevitable death?
In describing this slow and painful process, which happens to many people every day, I am reminded of Dante’s nine circles of hell. I have known numerous frail and/or profoundly disabled people experiencing chronic pain who have begged their doctors to put them out of their misery. I have read notes written by some doctors, where even though the terminally ill and distressed patient has had enough of the physical and existential pain and pleaded with the doctor to help put an end to it, the doctor sanctimoniously writes: “I told her I was sorry, but it is illegal”.
Pain control is not universal
Consultants, working in best practice settings, might be able to control pain in most of their patients, but I can assure you this is not a universal situation.
I know of a doctor who was reluctant to prescribe “breakthrough” morphine pain relief for his patient, for possible use over a weekend, because he did not like the idea of having unnecessary morphine at the nursing home premises. Doctors on holidays rely on locum services to attend their patients; these locum services cannot be called until after 6.00 pm. If there is a heavy call on the service, the locum may not get to the patient until the early hours of the morning or sometimes not at all; so no pain relief is available.
Some doctors have strong faith views and are reticent to prescribe adequate pain relief, as it may prematurely end life. Not to forget the minority of patients, who, because of the nature of their illness, even in best practice palliative care environments, continue to experience uncontrollable pain. Imagine how these patients must suffer in less optimum settings.
Ironically, against this backdrop, euthanasia occurs every day without consultation with patients or their loved ones. In this arena, doctors and nurses have extraordinary power. They decide how much morphine patients can have and when they can have it. Doctors can unilaterally make the decision that a sick elderly patient is palliative. Once a doctor, driven in part by their own world view, decides a patient is palliative, usually all medications, other than pain relief and comfort measures, are ceased.
I recall a situation of an elderly woman who suffered a stroke; her doctor decided she was palliative and told her he was ceasing her medications. He did not appear to give her the choice of continuing to live with a diminished quality of life. The ceasing of the medications meant that she died of complications related to underlying conditions and not of the consequences of the stroke. This woman and her family were certainly not provided with informed choice.
When a patient is palliative, the doctor usually prescribes either regular or as-needed morphine; in most cases both will be prescribed. In making the prescription the doctor advises a varying dose, for example between 5mg to 10mg at stated intervals. Within this range, at any given time, it is at the discretion of the nurse how much is administered.
Whilst morphine is an extremely effective way to provide pain relief, it also has the potential to decrease respiration enough to hasten death. So every day across Australia, nurses are deciding when and how much morphine they are going to administer. In reality how much is given, and when, can again very much depend on that individual nurse’s belief systems, faith and experience.
‘Not on my shift’
Whilst never witnessing this, I have also heard numerous anecdotal reports of nurses not wanting patients to die on their shift, because they did not want to have to stay back and complete “paper work”. Because of this, just in case it ended the patient’s life, they have withheld appropriate pain relief.
Doctors and nurses are practicing euthanasia every day without, in most cases, informed consent from the patient or the people who matter in that patient’s life. Is it fair that doctors and nurses have this control and power in the absence of informed consent? What is this telling us about our society’s commitment to a person’s basic human right to control the fundamental decisions of how they live their lives, and as part of that living the circumstances of their death?
I support voluntary euthanasia; this is not saying if I was seriously disabled, had a terminal illness or was experiencing constant and unremitting pain, I would voluntarily end my own life, but I would like the right to choose.
It is also important to recognise that people can, and sometimes do, change their mind. People, who thought they would want their lives to end in particular circumstances, sometimes make a different choice when such circumstances arrive.
I have a strong belief and commitment to human rights and an individual’s right to determine how they live and die. In arguing this, I also want safeguards allowing people to change their mind. I have an emotional “that’s not fair” reaction to the current situation where I live in a society that actively practices euthanasia but denies this.
The decision on euthanasia is often being made quite unilaterally by medicos for the rest of us; that’s not fair!!
* Rhonda Pryor is a member of Civil Liberties Australia