Skip to main content Accessibility help
×
Home
Hostname: page-component-dc8c957cd-vwk4l Total loading time: 0.441 Render date: 2022-01-26T23:39:59.283Z Has data issue: true Feature Flags: { "shouldUseShareProductTool": true, "shouldUseHypothesis": true, "isUnsiloEnabled": true, "metricsAbstractViews": false, "figures": true, "newCiteModal": false, "newCitedByModal": true, "newEcommerce": true, "newUsageEvents": true }

Medical Assistance in Dying (MAiD) in Brain Cancer: Whose Autonomy Are We Respecting?

Published online by Cambridge University Press:  20 August 2021

James R. Whittle
Affiliation:
Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia Sir Peter MacCallum Department of Oncology, The University of Melbourne, Melbourne, VIC, Australia Cancer Biology and Stem Cells Division, The Walter and Eliza Hall Institute of Medical Research, Parkville, VIC, Australia Department of Medical Biology, The University of Melbourne, Parkville, VIC, Australia
Molly Williams
Affiliation:
Children’s Cancer Centre, The Royal Children’s Hospital Melbourne, Parkville, VIC, Australia Victorian Paediatric Palliative Care Program, Parkville, VIC, Australia
David D. Eisenstat*
Affiliation:
Children’s Cancer Centre, The Royal Children’s Hospital Melbourne, Parkville, VIC, Australia Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia Neuro-Oncology Laboratory, Murdoch Children’s Research Institute, Parkville, VIC, Australia
*
Correspondence to: David D. Eisenstat, Children’s Cancer Centre, The Royal Children’s Hospital Melbourne, Parkville, VIC, Australia. Email: David.Eisenstat@rch.org.au
Rights & Permissions[Opens in a new window]

Abstract

Type
Editorial
Copyright
© The Author(s), 2021. Published by Cambridge University Press on behalf of The Canadian Journal of Neurological Sciences Inc.

We lack effective and especially curative treatments for many brain cancers and unfortunately, for most adult patients, brain cancer is a terminal diagnosis. For those with lower grade tumours, the prognosis is less certain and survival may be measured in decades. Consequently, there is a need for early discussions in Neuro-oncology around supportive and palliative care that consider advance care planning and optimising function in the face of inevitable deterioration. For some patients, the choice of an early death is preferable to the fear of suffering and loss of independence that a slightly longer life might present. Medical assistance in dying (MAiD), also known as physician-assisted suicide (PAS) or voluntary-assisted dying (VAD), may be self-administered or clinician administered, depending on legislation.Reference Mroz, Dierickx, Deliens, Cohen and Chambaere1 The practice remains controversial, and some have expressed concern that MAiD may be primarily driven by the inequity of access or failure to implement early and comprehensive palliative care as well as by potential social or financial vulnerability.Reference Snyder Sulmasy and Mueller2 Similarly, concerns exist regarding the inequity of access to MAiD itself,Reference Buchbinder3 including in many faith-based health care settings where MAiD is unavailable. This polarising topic is overlaid by the potential negative impact of a brain cancer diagnosis on cognitive function and decision-making capacity that often goes unrecognised.Reference Kerrigan, Erridge, Liaquat, Graham and Grant4

Despite insufficient guidelines for competency assessment and decision-making for MAiD in Neuro-oncology, there is consensus that understanding both patient and clinician views is required. In this issue of the journal, Climans et al. reported on an international online survey of Neuro-oncologists identifying attitudes and perspectives on MAiD, including the assessment of decision-making capacity and the moral permissibility of the practice.Reference Climans, Mason, Edelstein, Variath and Bell5 Hypothetical scenarios were used to identify physician opinions about the eligibility of MAiD for certain patients. Accepting the limitations of low response rates (125/10,000), the study confirms differing opinions of Neuro-oncologists, although all acknowledge that capacity must be assessed carefully. Because most respondents were from jurisdictions in which MAiD is not yet legal, and only 16% had participated in the process, familiarity and provider experience may influence responses. This is supported by practitioners with increased time in clinical practice reporting fewer moral objections and increasing support from physicians in countries where MAiD has been implemented longer.Reference Kouwenhoven, Raijmakers and van Delden6,Reference Smets, Cohen, Bilsen, Van Wesemael, Rurup and Deliens7 Surveys of physicians in this context are also limited by non-random sampling as well as the framing of questions with ‘yes-or-no’ options. Additional understanding from this survey will be presented after qualitative interviews of survey respondents currently under evaluation.

MAiD has been lawful in some jurisdictions since the 1940s and in Canada since 2016.Reference Downar, Fowler, Halko, Huyer, Hill and Gibson8 Since then, participation in MAiD has increased steadily each year and accounted for approximately 2.5% of all deaths in 2020,9 and internationally this ranges from 0.3% to 4.6%.Reference Emanuel, Onwuteaka-Philipsen, Urwin and Cohen10 MAiD remains controversial and a topic of intense debate. Public interest is driven by concerns about suffering and the desire for patient autonomy, often motivated by highly visible and personal stories. In contrast, the physician perspective demonstrates less support, frequently highlighting concerns about misuse of MAiD in the context of financial and social vulnerability, as well as the dangers of the ’slippery slope’, and multiple groups, including the American College of Physicians, have released position statements arguing against the support of MAiD.Reference Snyder Sulmasy and Mueller2,Reference De Lima, Woodruff and Pettus11 Despite these concerns, multiples cohorts have found MAiD recipients to be wealthier, well-educated, and more likely to be partnered,Reference Downar, Fowler, Halko, Huyer, Hill and Gibson8,Reference Steck, Junker and Maessen1215 suggesting that requests for MAiD are unlikely to be driven by social or financial inequity.

Brain cancer is unique, as a malignancy that affects the very essence or identity of an individual, due to the impact of the tumour on personality, cognitive function, and competence. Therefore, debate on MAiD in Neuro-oncology requires attention to self-identity and maintaining the dignity of patients with brain cancer. Although pain and suffering are often considered drivers of requests for MAiD, more frequently the loss of dignity, autonomy and inability to enjoy life influences requests for MAiD.Reference Emanuel, Onwuteaka-Philipsen, Urwin and Cohen10,15 This concern raises questions about advance care planning and decision-making in the patient whose disease changes cognitive capacity such that they can no longer consent to MAiD. In this scenario, should we enact the wishes of the patient before their impairment or the ‘new’ patient before us who has been borne out of the disease? The issue of impaired decision-making capacity in patients with brain cancer may also be under-recognised, particularly in high-grade glioma (HGG).Reference Kerrigan, Erridge, Liaquat, Graham and Grant4 Assessment of this capacity is made doubly complex in brain tumour patients due to the prevalence of complicating symptoms including aphasia and intermittent impairment of consciousness.Reference Isenberg-Grzeda, Sofie, Larrivee and Graber16

The popular focus on MAiD as the ‘solution’ to end-of-life suffering absorbs substantial political attention and funding, while neglecting most dying patients who may not consider it. In the context of brain cancer, a recent report from the State of Washington examining HGG patients’ request for MAiD found only a minority of those who are prescribed elect to proceed with MAiD.Reference Chamberlain17 Amongst palliative care providers, there is concern that MAiD will be further conflated in the public mind with palliative care (due to fear that the promotion of effective opioid analgesia in palliative care is ‘euthanasia by stealth’), and this may dissuade patients who could reap substantial symptomatic benefits from accessing palliative care.Reference Waran and William18 Early, comprehensive palliative care support for brain cancer patients has been shown to result in high patient and carer satisfaction and improved quality of life, and to be highly cost-effective through reducing hospital readmission rates with uncontrolled symptoms or deterioration.Reference Pace, Villani and Di Pasquale19 It would be unfortunate if access to and funding of these goals were impacted by a disproportionate focus on MAiD.

Many arguments are advanced both in favour and against MAiD; however, the momentum internationally continues, and the intensity of debate shows no sign of abating. Detailed guidelines for decision-making in MAiD are indicated to support Neuro-oncologists in assessing competency while ensuring respect for patient autonomy and dignity. The question remains, can palliative care and MAiD co-exist and will improvements in and earlier introduction of palliative care in the brain cancer patient’s journey be impeded by the further developments of MAiD? In the context of the terminal nature of most brain cancers, this study reminds us to engage early, frankly and often with our patients about their priorities and preferences for end-of-life care, to ensure that we can be advocates for and guardians of those wishes when their competence and autonomy are inevitably diminished by their disease.

Disclosures

The authors have no conflicts of interest to declare.

Statement of Authorship

All three authors equally contributed to design, manuscript preparation, and final approval.

References

Mroz, S, Dierickx, S, Deliens, L, Cohen, J, Chambaere, K. Assisted dying around the world: a status quaestionis. Ann Palliat Med. 2021;10:3540–53.10.21037/apm-20-637CrossRefGoogle ScholarPubMed
Snyder Sulmasy, L, Mueller, PS, Ethics, Professionalism and Human Rights Committee of the American College of Physicians. Ethics and the legalization of physician-assisted suicide: an American College of Physicians position paper. Ann Intern Med. 2017;167:576–8.10.7326/M17-0938CrossRefGoogle ScholarPubMed
Buchbinder, M. Access to aid-in-dying in the United States: shifting the debate from rights to justice. Am J Public Health. 2018;108:754–9.10.2105/AJPH.2018.304352CrossRefGoogle ScholarPubMed
Kerrigan, S, Erridge, S, Liaquat, I, Graham, C, Grant, R. Mental incapacity in patients undergoing neuro-oncologic treatment: a cross-sectional study. Neurology. 2014;83:537–41.10.1212/WNL.0000000000000671CrossRefGoogle ScholarPubMed
Climans, SA, Mason, WP, Edelstein, K, Variath, C, Bell, JAH. Neuro-oncology clinicians’ attitudes and perspectives on medical assistance in dying. Can J Neurol Sci. 2021, 120. DOI 10.1017/cjn.2021.186.10.1017/cjn.2021.186CrossRefGoogle Scholar
Kouwenhoven, PS, Raijmakers, NJ, van Delden, JJ, et al. Opinions of health care professionals and the public after eight years of euthanasia legislation in the Netherlands: a mixed methods approach. Palliat Med. 2013;27:273–80.10.1177/0269216312448507CrossRefGoogle ScholarPubMed
Smets, T, Cohen, J, Bilsen, J, Van Wesemael, Y, Rurup, ML, Deliens, L. Attitudes and experiences of Belgian physicians regarding euthanasia practice and the euthanasia law. J Pain Symptom Manage. 2011;41:580–93.10.1016/j.jpainsymman.2010.05.015CrossRefGoogle ScholarPubMed
Downar, J, Fowler, RA, Halko, R, Huyer, LD, Hill, AD, Gibson, JL. Early experience with medical assistance in dying in Ontario, Canada: a cohort study. CMAJ. 2020;192:E17381.10.1503/cmaj.200016CrossRefGoogle ScholarPubMed
Second annual report on medical assistance in dying in Canada. Health Canada; 2021. Available at: https://www.canada.ca/content/dam/hc-sc/documents/services/medical-assistance-dying/annual-report-2020/annual-report-2020-eng.pdf; accessed August 4, 2021.Google Scholar
Emanuel, EJ, Onwuteaka-Philipsen, BD, Urwin, JW, Cohen, J. Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. JAMA. 2016;316:7990.10.1001/jama.2016.8499CrossRefGoogle ScholarPubMed
De Lima, L, Woodruff, R, Pettus, K, et al. International Association for Hospice and Palliative Care Position statement: euthanasia and physician-assisted suicide. J Palliat Med. 2017;20:814.10.1089/jpm.2016.0290CrossRefGoogle ScholarPubMed
Steck, N, Junker, C, Maessen, M, et al. Suicide assisted by right-to-die associations: a population based cohort study. Int J Epidemiol. 2014;43:614–22.10.1093/ije/dyu010CrossRefGoogle ScholarPubMed
Chambaere, K, Rietjens, JA, Cohen, J, et al. Is educational attainment related to end-of-life decision-making? A large post-mortem survey in Belgium. BMC Public Health. 2013;13:1055.10.1186/1471-2458-13-1055CrossRefGoogle ScholarPubMed
Dierickx, S, Deliens, L, Cohen, J, Chambaere, K. Comparison of the expression and granting of requests for euthanasia in Belgium in 2007 vs 2013. JAMA Intern Med. 2015;175:1703–6.10.1001/jamainternmed.2015.3982CrossRefGoogle ScholarPubMed
Oregon Death with Dignity Act. 2020 data summary. Oregon Public Health Division; 2021. Available at: https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year23.pdf; accessed August 4, 2021.Google Scholar
Isenberg-Grzeda, E, Sofie, K, Larrivee, EJ, Graber, JJ. Legal assistance in dying for people with brain tumors. Ann Palliat Med. 2021;10:893–8.10.21037/apm-20-756CrossRefGoogle ScholarPubMed
Chamberlain, M. Physician assisted suicide in high grade gliomas: a university-based practice perspective. Neuro Oncol. 2016;18:vi144.10.1093/neuonc/now212.599CrossRefGoogle Scholar
Waran, E, William, L. Navigating the complexities of voluntary assisted dying in palliative care. Med J Aust. 2020;213:2046 e1.10.5694/mja2.50729CrossRefGoogle ScholarPubMed
Pace, A, Villani, V, Di Pasquale, A, et al. Home care for brain tumor patients. Neurooncol Pract. 2014;1:812.Google ScholarPubMed
You have Access

Send article to Kindle

To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Medical Assistance in Dying (MAiD) in Brain Cancer: Whose Autonomy Are We Respecting?
Available formats
×

Send article to Dropbox

To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

Medical Assistance in Dying (MAiD) in Brain Cancer: Whose Autonomy Are We Respecting?
Available formats
×

Send article to Google Drive

To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

Medical Assistance in Dying (MAiD) in Brain Cancer: Whose Autonomy Are We Respecting?
Available formats
×
×

Reply to: Submit a response

Please enter your response.

Your details

Please enter a valid email address.

Conflicting interests

Do you have any conflicting interests? *