End of Life Care for Patients with Severe Eating Disorders in Canada and Great Britain

2023 has been a notable year where end of life decisions for those with severe eating disorders are concerned. One notable change to end of life care has come in the form of Canada’s decision to expand the country’s criteria for medically assisted dying. Due to come into force in March 2024, those with chronic and incurable eating disorders will be eligible for medical assistance in dying (MAID) for the first time. Initially legalised for terminal illnesses in 2016, this will be the third amendment to the Canadian MAID eligibility criteria. Following on from changes to include non-terminal but incurable conditions in 2021, this extension to include MAID for those with a serious incurable mental illness “will make Canada one of the most expansive countries in the world” for medically assisted death.

Whilst it is considered that this will advance parity of access for the care of incurable mental and physical incurable illnesses, the alterations to MAID guidelines have been met with mixed reactions since their announcement. Some psychiatric and charitable organisations have criticised the expansion, including Canada’s largest psychiatric teaching hospital. Toronto’s Centre for Addiction and Mental Health has argued that on the basis of inadequate research into possible consequences, the country is unprepared for the move. Canadian and global News outlets have subsequently queried whether it is therefore “a good idea to give the most vulnerable an easier way to die”.

With just over 6 months left prior to the introduction of the MAID mental health provision, a lack of clear consensus remains. However, for 47-year-old Lisa Pauli, the changes to the law could not come soon enough. The Canadian has suffered from Anorexia Nervosa (AN) for almost 40 years, and weighing just 92 lbs (approximately 41.7 kg), she is too weak to even carry her shopping home. Whilst AN is certainly not incurable or terminal in all cases, longer term presentations of the condition can develop into Severe and Enduring Anorexia Nervosa (SEAN) as seen in the instance of Ms. Pauli.

Medical care for SEAN has proven to be a cross-jurisdictional issue, with the prospect of a full mental and physical recovery proving a virtual impossibility for some patients. Looking within the borders of England and Wales, care for AN or SEAN patients presenting with low BMIs is often focused on reversing the effects of a patient’s low weight and possible malnutrition. Clinically assisted nutrition and hydration (CANH), such as nasogastric feeding, can be authorised without a patient’s consent under either the Mental Capacity Act (2005), or the Mental Health Act (1983). At present, no advance decision refusing CANH has been upheld on the basis that no patient with AN has been found to have the requisite capacity at the time of drafting, despite medical evidence to the contrary. CANH can be life-sustaining care, but it is important to note that frequent instances of compelled treatments can in fact lead to “futile and harmful” consequences.

In addition to the physical discomfort of CANH, described in the case of A Mental Health Trust v BG [2022] as like “acid under skin”, there can be longer term detriments. This can include a revolving door process of weight gain during inpatient care and subsequent restriction and malnutrition following discharge. Multiple bouts of unsuccessful treatments can lead some SEAN patients to the conclusion that “that death (from their condition), while perhaps not welcome, will be inevitable”. Notwithstanding this, the availably of palliative care options in England and Wales have historically been limited. Those at risk from dying of SEAN may however soon be provided with a new ‘severe and enduring eating disorders pathway’. As reported by the Telegraph, who are in possession of a leaked NHS guidance document, across NHS clinical networks in the East of England since last year. The Telegraph has reported that this is set to be offered to patients as young as 18.

In a statement issued by The Royal College of Psychiatrists, The College suggested that whilst palliative care could be appropriate in the most severe cases, this should not become common clinical practice. In the light of novel research shedding light on AN’s biological aetiology, it is possible that new treatment methods could be discovered. Increased funding for such research is therefore a necessity- but equally important is greater funding for chronically overwhelmed eating disorder treatment units across England and Wales.

Echoing the lack of consensus on the Canadian position, it is therefore clear that decision-making pertaining to end of life care for patients with eating disorders is a contentious topic. Whilst palliative care and MAID are typically complementary but pathways intended to give individual’s greater choice about their care, both options have drawn heavy criticism. A common thread running through critiques of proposed changes in both jurisdictions is the failure to “first increase mental health care funding”. The challenge now must be to prioritise finding the ‘right’ balance in caring for those with AN. Securing an approach that promotes the autonomy and dignity of patients will therefore be crucial to ensuring that those with AN are at the heart of the decision-making process and can “choose their own pathway”.

Rachel Jenkins, PhD candidate and part-time tutor, Durham Law School.