Extract of evidence to the Canadian Special Parliamentary Committee on Medical Assisted Dying Committee/Comité Aide médicale à mourir AMAD@parl.gc.ca
Professor Ilora Baroness Finlay of Llandaff FRCP FRCGP FMedSci FHEA FLSW
Evidence to be given orally on 18 October 2022
Specialist palliative care
In 1989 Palliative Care was recognised as a specialty in the UK and developed its own higher specialty training programme, which now involves 5 years training in Internal medicine after obtaining a medical degree, plus 4 years specialty training in palliative medicine. This includes a minimum of 6 months in each of Community team, hospice, and a hospital support team, making a total of 9 years post-graduation training.
In 1989 the distance learning Diploma MSc in palliative medicine was established at Cardiff University which has trained over 3,000 doctors around the world; many have become leaders in their own countries.
Notably in Canada, Palliative Care was only recognised as a medical specialty in 2017, after medical assistance in dying (MAiD) was enacted in 2016.
Recently the Health and Care Act 2022 in England has been amended to include the requirement for the commissioning of palliative care to meet the needs of the population (including access to specialist palliative care) as a core NHS provision.
What is palliative care
Palliative care has been defined in the following ways:
World Health Organisation
|An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.|
Association for Palliative Medicine of Great Britain and Ireland:
|Palliative care is active, total care of patients whose disease is not responsive to curative treatment.
The control of pain and other symptoms and of psychological social and spiritual problems is paramount.
The goal is to achieve the best possible quality of life for patients and their families.
Priorities focus on meeting every individual’s goals, to deliver individualised, holistic care.
International Association for Hospice & Palliative Care:
|Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families, and their caregivers.|
Note that all require improvement in the quality of life of patients and their families/carers. All also have a focus far beyond the physical symptoms of disease, with stress on the psychosocial aspects of care being very important.
There is strong evidence that the way a person is cared for can enhance their sense of dignity and personal value. Non-empathic attitudes, care that is dismissive and that fails to enhance a person’s sense of worth had been shown to destroy a person’s self-esteem and sense of dignity. (ref 18)
When people become ill with serious life threating disease the time of diagnosis is the highest risk time for suicide, but the incidence of suicide drops over time even though disease progresses. This means that good psychosocial support is needed around the time of diagnosis or original disease recurrence and suicide represents a failure of care provision.
Thus, an important role of palliative care is to work in conjunction with other medical specialists such as oncology, neurology, cardiology etc to accurately diagnose the underlying causes of distress in all domains – physical, emotional, social, and spiritual / existential concerns. The concept of total pain or overwhelming distress was shown by Cicely Saunders, founder of the hospice movement, to arise from the amplification of the pain experience by emotional and psychological anguish, including depression, fears, worries, unresolved guilt, and past traumas in life. The physical pain can have several disease related causes, each of which need tailored treatment. Thus, good palliative care goes far beyond prescribing analgesics, such as opioids. An example of this is illustrated below:
A young patient had overwhelming pain requiring many breakthrough doses of morphine through the evening, but then slept all next day. Through gently listening, this person disclosed the devastation of an adored friend’s suicide in late teenage years. Every evening at visiting, the fear of inflicting such pain of parting their child was overwhelming. After discussing ways to prepare the child for bereavement, and lessen such pain in grief, analgesic requirements dropped dramatically, and the person went home.
Suicide, assisted dying and euthanasia
A desire for death can occur at any time in a person’s life and can fluctuate. People may feel that death is their only option at some times in their lives but live on to find new meaning in their lives, grateful to still be alive. A frequent feature of those expressing a suicidal wish at a crisis in life is that they cannot think through the implication of their death for others, nor do they conceive of the finality of death (discussion with Samaritans volunteers).
Now that Canada has lifted the reasonably foreseeable death requirement last year, the term “assisted dying” has become inappropriate because those whose lives are being ended by lethal drugs are not in the dying phase of their lives. Therefore the term “physician assisted suicide” (origin of the word suicide is sui=self and cide=killing), where the person takes lethal drugs supplied by the clinician, or euthanasia, where the physician injects lethal drugs, are the legally accurate descriptors.
This will be particularly relevant from March 2023 when mental illness by itself will be a sole criterion for allowing life ending drugs, even though many mental illness conditions resolve over time. It is unclear from the proposals how suicide prevention strategies will remain intact in the face of the legislation.
Legislation and autonomy
The duty of a legislature is to its citizens. Primarily that requires the protection of the population from harm as much as is possible and inevitably requires the restriction of some freedoms where the exercise of such a freedom may endanger others.
In the exercise of autonomy in civil society, the relational nature of autonomy is paramount – thus autonomy does not mean “I want therefore I get” but means that the autonomy of one person cannot override the autonomy of another. The patient cannot demand a clinician does something to them that the clinician is not in agreement with and conversely a clinician must not suggest a course of action that they know is harmful. In the exercise of autonomy each person has a duty to consider the implications for self and others – in a free society autonomy is a relational right not an absolute right.
Specific issues to be considered with any legislation on assisted dying
Lack of publicity around good deaths, scare stories and the portrayal as MAiD as the only way to have a good death are deeply misleading. The following core issues are ill-understood:
- Prognosis is notoriously inaccurate – even in those expected to die within 72 hours, 3% improved (Liverpool Care pathway data). The Royal College of General Practitioners, in evidence to the House of Lords Select Committee on the Assisted Dying Bill, stated ““It is
possible to make reasonably accurate prognoses of death within minutes, hours or a few
days. When this stretches to months, then the scope for error can extend into
years” (HL Paper 86-1)
A patient, referred three decades ago, was expected (by his GP, surgeon, oncologist, and myself) to die within 3 months. He was desperate for euthanasia. Overall improvement took several weeks to achieve. 11 years later his wife died, leaving him to bring up their three children on his own and he is still alive today and living independently.
- Diagnostic errors are not rare. At post-mortem around 1 in 20 patients are found to have died from a different condition to that entered on the death certificate. (RCPath data)
- Many physicians fail to adequately assess decision-specific mental capacity. Medications can interfere with capacity, particularly opioids and steroids. Disease itself interferes, through metabolic disturbance or brain lesions. The steps in assessing capacity involve identifying if there is a disorder of the mind, that may interfere with the ability to retain information and weigh up the implications of a decision for self and others. Patients with disability but unable to access the support they need and who have financial difficulties, say ‘I don’t want to die but I don’t want to live like this’ (ref films from Canada). However, it is important that failures in state provision of disability support do not inadvertently coerce people into ending their lives. Failure of the state to care for its citizens is not a valid moral or ethical reason for the state to be complicit with their death.
- Doctors are poor at detecting coercion when physical injury is not evident – both internal coercion from a person’s mental state and external coercion which may be overt or covert. Most abuse goes on behind closed doors and many victims remain in abusive relationships because they have no means to escape. Hourglass (a charity focusing on action against elder abuse) data reveals that 1 in 5 people in the UK over the age of 65 have been affected by abuse, 83% in their own home. Such abuse is principally financial (37%), neglect (21%) and psychological (33%).
- Doctors compassion blinds them to identifying coercion. Doctors are trained to believe what they are told, not to suspect coercive pressures.
- Coercive pressures externally can come where society denies a person the support they need to live well and maximise their quality of life. For many patients, loneliness is a contributory factor to despair, which is relieved thorough initiatives such as compassionate communities, domestic modifications, providing appropriate equipment or a more patient focused approach to care. Disability phobia can result in disabled people being shunned and isolated, as well as provoking fear of rejection in those who are newly disabled.
- The influence of doctors in a consultation is considerable. When a patient says, ‘I can’t go on’, the doctor has two diametrically opposed options. One is to confirm that the patient wants lethal drugs, to process that request and thereby give the stamp of medical beneficence to ending life, making it particularly coercive when euthanasia is offered as a medical ‘treatment’ option. The other is to ask the patient what it is that is making life intolerable, address their fears, and above all listen to the issues and then act to improve the person’s quality of life. Having had countless numbers of such conversations, I know that although it is hard work to meet people’s needs, it is rewarding for all, particularly for family/carers.
- Drug regimes used to end life have never been scientifically evaluated in practice. If ending life is being offered as a medical intervention, then it should be subject to the same rigorous evaluation as any other intervention (such as chemotherapy), to detect complications and to determine the mode of action. Where long-acting paralysing drugs such as rocuronium are used, the complete inability of the patient to move means that respiration is impossible, and the patient dies of asphyxia. The short acting sedative drugs, such as propofol, have a short half-life and some patients will rapidly regain consciousness but when paralysed by rocuronium the onlookers will have no signal that the patient has regained consciousness. Bupivacaine is being used to induce cardiac arrest but without monitoring it is possible that cardiac arrest occurs after consciousness has been regained but not detected. In considering extension of MAiD to those with psychiatric illness the committee must be aware that many of these patients are physically strong, may have a history of alcohol intake that will have induced liver enzymes so their metabolism shortens the time of sedation from propofol and midazolam.
- Consultations to assess patients for MAiD are not audited. The nature and thoroughness of assessment processes are unmonitored. Doctors’ communication skills and unconscious biases vary. All such ‘assisted death’ consultations should be recorded and scrutinised by an independent evaluation panel to ensure that doctors are complying with their duty of care. In the UK in the 1990s we had the mass murderer Dr Shipman – under the Canadian legislation one can see how he might never have been eventually detected or convicted.
Many factors influence mental capacity, including medication, disease, infection etc. The person must be able to retain information and, importantly, weigh up the implications of their decision for self and others.
Assessments of mental capacity is complex. As well as undertaking all efforts to maximise capacity, it is particularly important to help the person see the implications of a decision for self and others, and to understand the finality of death.
For those with psychiatric illness, the natural history of much psychiatric disease, such as anxiety-depression states, post-traumatic stress disorder, anorexia etc is that the patient recovery may take months or years with appropriate management, but is attainable. Patients with severe mental illness can lack capacity for major decisions such as to end their life as they have an altered sense of reality. As disease progresses, an advance directive cannot be relied on because personhood changes and the patient is no longer the person they were previously, with different values and priorities in their daily life to those held previously.
Early life ending of patients provides cost-savings to health and social care, with calculations of savings up to Can$135million through MAiD (Albaladejo A. BMJ 2019;364:1852 doi: 10.1136/bmj.l852). Such data should be transparent and the public fully informed as this is a contributory factor in influences on provision of lethal drugs.
The latest figures show that MAiD results in a cost saving of Can$149 million (Cost estimate for bill C-7 “Medical Assistance in Dying”. Ottawa: Parliamentary Budget Officer. Oct 20, 2020.) This will drive decision-making in care provision towards viewing a patient’s death as a cost-saving, particularly when care budgets are under pressure.
The state offer of death as a choice discriminates against those who are ill or disabled. It carries the societal message that as they are no longer healthy and economically contributing to the national finances, their lives are of less worth to society and are disposable.
The mentally ill are often those who have been failed by society: those with adverse childhood experiences, victims of abuse or those with addictions that have resulted from pressures of alcohol, gambling or drugs promotion in society. Mental health services then also fail them as they remain distressed and disturbed. To then offer them death as a solution to their problems discriminates against them, as it no longer requires society to provide care and support, but views their lives as not worth supporting.
Development of Canadian Palliative Care
It appears incongruous that there is no legal obligation that people can access the palliative and support care they need in Canada, yet it is an obligation that those potentially eligible for life ending drugs are to be given this as a therapeutic option.
Widening access to palliative care support for patients requires an extensive programme in palliative care training for generalists and for medical, nursing, social work and allied health care professionals. All such training should be kept separate to MAiD assessment and management training. Training should include aspects of communication skills, management of common symptoms, care planning and the assessment of mental capacity for specific decisions.
Specialist palliative care teams should be funded completely separately from MAiD providers to ensure that palliative care and hospice resources are not eroded, as this would deny patients any choice, leaving them the only option of death by MAiD.
Specialist palliative care needs to be recognised as an essential medical service, with a requirement that it is core funded in the same way that maternity and emergency services are deemed essential. Recent legislation in England requires health care commissioners to commission adequate palliative care services to meet the needs of their population.
Hospice and palliative care units in hospitals should never be required to admit patients specifically for MAiD to be administered but should maintain a focus on the relief of unrelieved causes of distress, whether physical symptoms or psychosocial distress. Consideration should be given to developing a funding formula for palliative care services to ensure adequate provision to meet the needs of the population.
There is an urgent need for research to examine the way that consultations over MAiD are conducted to ensure there is no coercive influence and that patients have exhausted the offer of treatment options. There is also an urgent need to evaluate the precise mode of action of drugs used in a lethal cocktail and to monitor the mode of death.
There is a need to evaluate the nature of consultations, by prospective monitoring, in which applications for MAiD are assessed, as it is notable that although the majority of physicians only conduct euthanasia occasionally, a small number are conducting a large number of such deaths.
The rapid escalation of deaths under MAiD and the number of reports in the press of coercive pressures on Canadians should give the committee reason to pause and rethink both the possible expansion of the programme and the way it is monitored and delivered. It may be far safer to remove MAiD provision from healthcare providers and to have patients assessed by an independent body outside of healthcare, with assessments recorded and auditable.
Lethal drug cocktails should be evaluated for safety and efficacy under standard ethical and scientific safeguards, to determine whether patients have regained consciousness while asphyxiating under the current cocktail of drugs used and determine the modes of action of the drug combination used.
As legislators, the question must be whether the current law is fit for purpose. If it is not, then the next question is whether a change will increase protection across society, particularly of the most vulnerable, or whether on balance the demands of some will put the lives of others at risk. The duty of a civilised society to care for all its citizens without discrimination must recognise ways that the vulnerable are inadvertently put at risk. The current proposals appear to be an existential threat to those with disability, whether through physical disability, mental illness or a combination of both.