Good afternoon, good evening. Thank you for your invitation to present my views on end of life today.
My name is Raphael Cohen-Almagor. For more than 30 years, I've been studying end-of-life concerns.
Ethically speaking, I think patients should be able to receive medical aid to end their lives. This should be done in the most attentive and careful way.
I restrict my reasoning to autonomous patients who are able to decide for themselves. Incompetent patients are, by definition, not autonomous. As they're unable to decide for themselves, the road for potential abuse is wider.
During the past decades I served as a consultant to several legislatures on end-of-life treatment. Inter alia, I served on the public committee that legislated the Dying Patient Law in Israel. I submitted to you the specific section of the law that addresses advance directives.
Advance directives are problematic. They're often made without the opportunities for full informed consent. On what basis did a patient make the decision that she would not want to be treated? A decision not to receive treatment should be based on a clear understanding of the situation. It is essential that a patient understands the disorder, the available alternatives and her chances and risks. This can be rather complicated when the physicians themselves do not have a clear picture about the condition and cannot provide a reliable prognosis.
My research in nine countries—the United Kingdom, Canada, Israel, the United States, Australia, New Zealand, the Netherlands, Belgium and Switzerland—shows that there have been a number of cases in which a physician playing God has abused their position of authority to make decisions that are not in the patient's best interests. Also, end-of-life care is often compromised due to economic considerations and a shortage of resources.
Research has evidence that advance directives are often made without an opportunity for full informed consent. For example, in the United States, advance directives might be utilized by medics against the patient's best interests to save costly resources. The research shows that advance directives have not fulfilled their promise of facilitating decisions about end-of-life care for incompetent patients. Many legal requirements and restrictions concerning advance directives are counterproductive. Despite their benevolent intentions, they have created unintended negative consequences against patients' wishes.
Let us examine the highly problematic case of dementia. As you may know, medicine at this point has not fully deciphered the mysteries of the brain. We know a lot about the heart, about the lungs, about the kidneys and about other organs, but we are yet to fully understand the brain. The human brain is struggling to understand the brain. Therefore, caution is a must.
In the first stage of dementia, patients tend to suffer from fears of becoming a burden on loved ones and on their medical care, as well as losing their independence and dignity. The suffering is mental. The suffering can be alleviated with dualistic palliative care that addresses the patient's mental, psychological, physical and social needs with assurances that the patients have an intrinsic value notwithstanding their deteriorating current condition, with family solidarity and with compassion and respect for the patients who are now at a junction where they need attention more than ever before.
As patients with dementia tend to be older adults, they should be assured that it is payback time. All their lives, they gave to others—their children, their friends, their society. Now it is their turn to receive. The moral imperative is to provide compassion and care for people with dementia.
With the advance of dementia, its distressing symptoms become more frequent. Pain and agitation become more common as death comes nearer, but generally speaking, these are treatable symptoms. Studies have shown that cognitive behavioural therapy, palliative care and hospice care could greatly improve the care of patients with advanced dementia. Patients with dementia who receive hospice care have fewer hospitalizations and milder psychiatric symptoms as compared with those who did not receive hospice care. Furthermore, families of patients with dementia who receive hospice care report greater satisfaction with care. When individuals are aware of the complexities of dementia and factor in the contradiction at the end of life whereby, with severe dementia, they will not be able to remember their previous wish and may well be pursuing other interests, yet are making a conscious decision that this is the time when their own lives should be terminated, that decision is bound to be fraught with doubts.
At the onset of the illness, death is premature. In the later stages, it is questionable because the patients show that some aspects of life are still meaningful to them. In the last stage, the patients are no longer autonomous to make such momentous decisions, and the physicians cannot be sure what the patients then want.
The dementia paradox cannot be solved with euthanasia. It needs to be addressed by more care, compassion and good doctoring. The medical team has a crucial part to play in promoting quality of care, from diagnosis until the last stages of dementia, to assess changes in cognitive functioning, memory, depression, fears, communication difficulties and behaviour alongside identification and treatment of symptoms. Early requests to die are often the result of desperation that the medical staff and the patient's beloved people can forestall by providing them outstanding support, care and sharing that will assure the patients that they are and will remain members of the human community. What we should do—