This article was published by Mercatornot on January 18, 2021.
There is a fundamental difference between assisted dying and palliative care
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| Dr Helen Lord |
Tasmania, Australia’s smallest state, like many other jurisdictions, is currently considering legalising voluntary assisted dying (VAD). It is of great concern that legislators are seeking to incorporate this into palliative and medical care.
Voluntary assisted dying sounds like a description of what should be occurring in normal medical practice: clinicians recognising those who are dying and then assisting them to live comfortably until they die. Such medical practice is currently the domain of palliative care, which can, and does, deliver relief of pain and suffering for those who consent to receive it.
The delivery of palliative care is highly personalised; it is not an impersonal process involving the meeting of various legal criteria. Palliative care requires communication by those with the necessary skills and attitudes to assess, enable, ease, and give good holistic medical care. There is no medical condition that has as a treatment the prescription of lethal substances with the intention to kill.
Palliative care
There is an extensive, publicly available evidence base for palliative care. However, there is no publicly available evidence base for the giving of lethal substances to patients — except for that used in the United States for capital punishment.
Modern palliative care arose because many people witnessed the common experiences of dying last century: patients neglected and left alone in windowless small rooms at the end of a corridor with families and friends excluded. The hospice and palliative care movement arose to provide them with a suitable environment and with appropriate patient centred care that valued and respected the dying person. It involved and was concerned with care of the dying person’s family and friends.
The evidence bases for the pharmacology of pain relief and symptom control developed, and Palliative Medicine was recognised as a medical specialty in Australia in 2000.
Palliative care principles are based on respect, valuing the life of each individual patient, and seeking to ensure that the vulnerability of those dying does not lead to a denial of care or abandonment. These palliative care values are constantly being challenged by the increasing corporatisation, bureaucratization, striving for efficiency and fragmentation of modern health care. There continues to be a need for better, more available palliative care services — yet we now see a demand for VAD.
Fear of pain and suffering
VAD is being driven in Tasmania by those who say they want choice because they fear pain and suffering at the end of life. They claim wide support from the community in general.
Yet experience so far in Victoria, the first Australian State to legalise VAD, is that only a small percentage of people take up the offer. Stories of pain and suffering in dying are repetitively aired by grieving relatives and friends or by treating clinicians who have not known about, or sought access to palliative care for advice. The powerful effect of transference of guilt and grief in these situations is clear, but not widely recognised.
These stories perpetuate the myth that the end of life is associated with pain and suffering, which I know from my experience is not true for the majority, and certainly not the experience of those who are referred to and are able to access palliative care in a timely manner.
There are still many people in Australia who do not have access to palliative care services or an appropriate place of care when they die. It is irresponsible that legislation based on “choice” is being proposed when there are many within society denied choices through lack of access to palliative care.
Effects on vulnerable patient groups
Patients with serious and terminal illnesses are vulnerable to suggestion due to the psychological effects of facing life-threatening disease. There are also many groups within our community who are likewise vulnerable: the elderly; those living in rural areas; those with physical disability; those with mental illness; those in marginalised minorities.
These groups of people will inevitably face increased pressure to accept VAD if such legislation is passed, because of their less privileged access to care.
Once VAD is allowed, although initially in strict circumstances, it will rapidly become normalised and will be seen by the medical profession as an easy option: the options of other care and treatment modalities will be not worth considering. This is already being observed in Victoria with VAD being suggested by clinicians as an option for people surviving suicide attempts.
Disability groups in Canada are reporting that people living with disabilities are asking to access VAD because they cannot afford financially to go on living.
Effects on the medical profession and palliative care
Maintaining the integrity of the medical profession, upon which we all rely when we are ill, should be of paramount importance. Having doctors licenced to assist in suicide or the deliberate termination of life lessens the trust that patients can have in their doctors. Such behaviours go against the long-standing convention that doctors do not harm their patients.
Doctors heal, restore, ease and comfort; they do not kill, even if asked. Being involved with VAD violates a moral code that most doctors rely on for their identity; hence the very existence of VAD creates for all doctors a risk of moral injury, in the same way as is seen in combat troops facing ethical dilemmas over life and death.
The impact of just one case of VAD on a clinician’s psychological health and practice is greater than in any other aspect of medicine. Clinicians in the Netherlands liken the psychological effort required for each case of euthanasia to being like that of “climbing Mount Everest”. It leaves “little else in the tank” for the practice of good medicine or for self-care.
For all the talk in public about VAD being for the relief of pain and suffering, it is known that most people accessing VAD do so because of issues of control or autonomy. Logically, therefore, there should be no need to involve doctors or palliative care services in the procedure of VAD. Survey results suggest most Australian doctors are unwilling to be involved in VAD, and most would refer patients for palliative care involvement. However, the legalisation of VAD places palliative care services in a moral bind.
The effects of legislation similar to Tasmania’s VAD, Canada’s Medical Assistance in Dying (MAiD), introduced in 2016, on palliative care practices are starting to become apparent. One Canadian palliative care unit has reported significant staff distress with clinicians being physically sick on the days of MAiD procedures; palliative care staff having to support patients who are ambivalent about MAiD so they can go through with it; patients not having pain relief in case it denies them being able to access MAiD on capacity grounds (perpetuating the myth of painful dying); having just one person considering MAiD causing considerable psychological involvement of all staff meaning that other patients needs are neglected; staff who are unwilling to be involved in MAiD being taunted by comments that they do not really care by patients wanting MAiD; staff being more uncomfortable in discussion of end-of-life matters in case they are misinterpreted.
Palliative care services in Victoria have also reported significant issues arising in their units since VAD was legalised there. Referrals to counselling for palliative care staff suffering from psychological distress because of their involvement in VAD have begun. Increased anxiety in palliative care patients because of the existence of VAD has been noted. In the interests of maintaining the functionality of heath care teams, and because of concern for other patients on their units, patients having VAD are being transferred elsewhere.
For all these reasons as caring communities we should be thinking most cautiously before bringing state sanctioned suicide and euthanasia into the medical and palliative care arenas.
There are fundamental ethical differences between palliative care and VAD procedures; we need to protect the vulnerable in our communities and those who are dying; and we need to support the staff of our palliative care and medical services in their work, not compromise them.
Dr Helen Lord MB BS MPHC FAChPM has worked in palliative medicine and general practice in Tasmania for over 30 years
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