This article was originally published on the School of Law blog https://criminaljusticeinireland.wordpress.com.
End-of-life decisions are legally and ethically complex. These type of decisions are especially emotive and it is an area of the criminal law which has been subject to considerable scrutiny. In particular, discussion of end-of-life decisions often relates to euthanasia, assisted suicide, and the liberalisation of laws in other jurisdictions e.g. California will legalise assisted suicide on 9th June 2016. However, discussion about the regulation of end-of-life care, such as specialist palliative care, is often overlooked. Despite this, it is argued in this post that detailed professional guidelines need to be introduced in this area. This should be viewed as an active step in ensuring that legitimate palliative care practices are not co-opted by or deployed as a stop-gap in the debate on euthanasia, as has recently occurred in France. In effect, professional guidelines in this area have a considerable role in clarifying the legitimacy of specialist palliative care practices thereby mitigating suggestions of criminal liability or impropriety in medical practice.
Specialist Palliative Care
Care for a person near the end of their life is often provided by the medical specialty of palliative medicine. It is an approach which aims to reduce and, if possible, eliminate suffering near the end of life, thereby improving the quality of living and dying. There are different levels of palliative care ranging from the low general palliative care approach up to specialist palliative care which is normally provided in a hospice setting.
It is the practices associated with specialist palliative care, such as palliative sedation, which raise concerns about professional liability and the legitimacy of the distinction between this practice and euthanasia. Palliative sedation has been defined by the European Association for Palliative Care as “the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering”. This form of sedation normally requires the presence of a refractory symptom. This is a symptom for which no appropriate treatment or alternative palliative methods are available. The sedative drug is usually administered when a patient is judged to be close to death i.e. where death is expected within two weeks. Sedation is to be administered at the lowest level which will give suitable pain relief for the patient. In this respect, there is little evidence that the death of a patient is hastened where the sedative is administered in such a fashion. Nevertheless, the practice of palliative sedation has been described as “slow euthanasia” and “backdoor euthanasia”. Such suggestions raise questions about the legitimacy of the distinction between palliative sedation and euthanasia. This raises the spectre of criminal liability and has the potential to impact negatively on the development of palliative care.
The suggestion that palliative sedation serves to hasten the death of a patient was dismissed in a 2015 Medico-Legal Journal of Ireland article (Lombard J, ‘Sedation of the Terminally Ill Patient: The Role of the Doctrine of Double Effect’ (2015) 22(1) MLJI 22). This also made it clear that the doctrine of double effect provides support for the administration of palliative sedation. Nevertheless, any such complex practice should be able to point to clear professional guidelines as a support for decision-making rather than drawing on an ethical justification such as the doctrine of double effect. Professional guidelines can serve as a bulwark against any weakening of the distinction between specialist palliative care and euthanasia. As noted above, this distinction has recently been somewhat weakened in France by new legislation on end-of-life care.
The French ‘loi sur la fin de vie’
In January of 2016 France introduced legislation which addressed medical care received at the end of life. In particular, the French ‘loi sur la fin de vie’ (End of Life Act) introduced a right to request and receive, subject to certain conditions, palliative sedation near the end of life. The origin of this legislation dates back to the French presidential election of 2012 where François Hollande signalled that steps would be taken to provide medical assistance to people so they could end their life with dignity. As such, the French ‘loi sur la fin de vie’ served to side-step a debate about euthanasia in France but the effect of this law is to suggest that palliative sedation can somehow act as a form of euthanasia for those near the end of life. In this regard, the law is viewed as a step towards providing for active assistance in dying in France. Moreover, the government refused to clarify that the intention of the doctor administering palliative sedation should not be to cause death. This is legally and ethically problematic for the provision of palliative care which is based on an intention to relieve the pain experienced by a patient; an intention which is not to be achieved by bringing about the death of a patient. As it stands, the French ‘loi sur la fin de vie’ appears to strike at the core principles of palliative care.
The Role of Professional Guidelines
The legal framework in Ireland for specialist palliative care is diverse in that it is composed of legislation, professional standards, and publications issued by representative bodies. In the context of palliative sedation, the Irish Association of Palliative Care has published both a discussion paper on palliative sedation as well as a position paper on artificial hydration in terminally ill patients. The European Association of Palliative Care has also published a recommended framework for the use of sedation in palliative care but this requires steps for implementation at the national level. These documents are helpful in clarifying specialist palliative care practices and in addressing questions of liability but they are not as detailed as the Dutch and Scottish guidelines on palliative sedation.
The Royal Dutch Medical Association (KNMG) issued a ‘Guideline for Palliative Sedation’ in 2005, and revised guidelines were published in 2009. These guidelines were a focussed attempt at distinguishing specialist palliative care practices from euthanasia. The guideline was particularly comprehensive as it addressed indications and preconditions for palliative sedation, the decision to begin sedation, the provision of hydration, as well as wider issues such as dealing with the patient’s family. Such guidelines not only serve to distinguish between practices but also provide much needed clarity for patients and healthcare professionals.
In late 2014 the Scottish Palliative Care Guidelines were published. These Guidelines contain substantial detail about the provision of specialist palliative care. For instance, the Guidelines set out the steps for pain management in detail as it refers to drug options, dose titrations, forms of pain, and potential side effects such as opioid toxicity. A main benefit of detailed professional guidelines such as this is that it clearly distinguishes legitimate pain management from criminal actions such as euthanasia.
This post does not envisage professional guidelines as being a panacea for legal and ethical issues raised by specialist palliative care but it is argued that guidelines serve to provide clarity for all parties, distinguish legitimate medical practice from euthanasia, and ensures that ethical justifications such as the doctrine of double effect need not be relied on to the same extent as might otherwise be the case. In effect, there is a delicate balance to be achieved in this area. The scope of the criminal law as it relates to euthanasia must be clearly circumscribed while ensuring that specialist palliative care can continue to be provided in an atmosphere where there are no negative connotations around this form of care.