EDITORIAL: by Peter WestmoreNews Weekly
Uncommunicative patients - a call on our compassion
, April 10, 2004
Several years ago, the Federal Parliament voted decisively to overturn a Northern Territory law which permitted euthanasia - physician-assisted suicide. A separate, but equally important, issue is whether doctors should continue to treat patients who, as a result of a serious brain injury or conditions such as advanced dementia, are unable to communicate with others in what is described, in the medical terminology, as a persistent vegetative state.
It should be emphasised that such people are not dying: they have periods of wake and sleep, and brain scans show there is brain activity which responds to the presence of loved ones, as well as sensations of pain and discomfort. They just cannot communicate, and more correctly should be described as having "locked-in syndrome".
I recently had the opportunity to participate in an important conference in Rome to discuss these qustions.
The number of people in this condition is currently not large. Austria and Italy keep reliable data showing that two in 100,000 are affected. For Australia, that would be 400 people.
However, their condition imposes severe burdens on the immediate family, and ties up medical resources which, some argue, should be used on patients with better prospects of recovery.
The problem is certain to increase with the rapidly ageing population, with an expected increase in the number of people completely dependent on others.
Although the Rome conference was convened by two agencies of the Catholic Church, the participants reflected the whole range of medical and ethical perspectives. All believed they had the best interests of the patient, and their families, in mind.
Many of the participants clearly believed that patients with poor "quality of life" are better off dead, and that doctors should either not treat infections to which such patients are susceptible, or should accelerate patients' death by withdrawing nutrition and hydration, or lethal injection.Bed blockers
One presentation by a doctor from Holland, comes particularly to mind.
He described how the role of doctors caring for patients in a vegetative state in a nursing home had changed over time, "from reacting to complications", which clearly aimed to keep patients alive, to "a pro-active role in which evaluation of the total medical treatment, including ANH [artificial nutrition and hydration], has become the starting point" of the process to bring about the death of the patient, if the next-of-kin agree.
At the same time, intensive efforts were made to get the family of the patient to agree. Discussing one particular case, he said, "We prepared them for our decision to withhold and withdraw treatment, including ANH."
He described patients without hope of recovery as "bed-blockers" - who were occupying space which could more usefully be taken by others.
Little wonder that euthanasia is now legal in Holland, and over 10 per cent of all deaths are brought about by acts or omissions of doctors.
This is not just a problem which exists in Holland. In both Britain and the United States, doctors present indicated that a similar approach is taken, at least in some cases.
Far different was the approach taken by some doctors from Italy and Spain. In these countries, a network of medical units have been established specially to look after these patients and their relatives.
They provide continuing medical treatment, on-going nutrition and hydration, posture and muscular therapy, as well as sensory and musical therapy, and other forms of mental stimulation. Families, of course, are regarded as crucial to the patients' well-being and possible recovery.
Interestingly, they showed that a significant minority of patients recover consciousness, and can either be discharged into less intensive medical facilities or, in some cases, return home.
However, the primary focus of these centres is respect for the person, however helpless and dependent, and true compassion for others. Not surprisingly, these centres have a strong Christian motivation.
The case for this approach was strengthened, in my view, by two important facts.
The first is the problem of misdiagnosis, and the second is that some (at least) of these patients have the normal range of human feelings (such as feeling pain, depression and anxiety) even if they are unable to respond.
The question of misdiagnosis was referred to in several papers, but was dealt with comprehensively by Dr Helen Gill-Thwaites of the Royal Hospital for Neuro-Disability, London.
Citing research at the hospital, and the medical literature, she reported that between 18 per cent and 43 per cent of PVS patients were misdiagnosed, and were capable of some level of response to external stimuli. These people need rehabilitation therapy.
The conference was told of patients who had recovered after being diagnosed as being in the persistent vegetative state, who clearly remembered hearing doctors discuss their case, feeling intense hunger, thirst and pain, but being unable to make their feelings known.
Interestingly, most had a strong desire to continue to live at this time, even though they were aware that medical staff regarded their condition as hopeless.
Our society must decide whether it is prepared to assist these patients, or not.
The utilitarian approach - that such people have no "quality of life" or that their lives are not worth living - will predictably be applied to a much larger group of elderly people (such as those with Alzheimer's disease), as has occurred in Holland.
The alternative approach is to continue to provide medical care and therapy for these patients, until they are rehabilitated, or until natural death.
The choices made will have important implications for the type of society in which we and our children live.
- Peter Westmore is President of the National Civic Council