By Dr Ben Gray, MBChB FRNZCGP(dist) MBHL
Discussion about the End of Life Choice Bill (the Bill) has focussed on whether euthanasia is acceptable, with strongly held views on both sides. It’s a values clash and debate is unlikely to offer solutions. The Bill is a proposal to address suffering (and fear of suffering) at the end of life. Instead of just focussing on one strategy (the Bill) we should consider a comprehensive programme to address the whole problem, prioritised according to value.
Increase awareness that normal dying does not involve suffering
Dr Kathryn Mannix,1 an experienced palliative care physician, notes that baby boomers are the first generation of people who have little experience of dying. Her grandmother nursed three family members whilst they died at home before she was 30. Many Kiwis don’t experience dying, and what we don’t understand we’re more likely to fear. We need to talk more about dying, and more vigorously promote Advance Care Planning.
Provide comprehensive palliative care
Australia and New Zealand Society of Palliative Medicine's (ANZSPM) Dr Rachel Wiseman notes2 that hospices are limited to main centres. Hospice New Zealand reports that of the $100 million spent on hospice services, $45 million was funded by donations3. Providing equitable access to palliative care will decrease suffering (or fear of it). Dr Wiseman made the cogent point that “we don't want people to see [assisted dying] as the option they're taking because they don't have ready access to good palliative care support."2
Care for those who have lost capacity
In an audit of Auckland aged residential care facilities, 65% of residents were found to lack the capacity to consent to being in that facility. Alarmingly, only 37% had an activated Enduring Power of Attorney or Welfare Guardian4. In legal terms, that means these residents were incarcerated against their will, and have no one advocating for their rights. These people are vulnerable. Most will be receiving satisfactory care, but we have no system to ensure this.
The Bill would use significant resources, of funds and staff, yet would only benefit a small number of Kiwis. In Oregon, similar legislation affected just 0.39% of deaths5 and in Canada this figure was 1.07% in 20176 – this tends to be the educated white population5. There has been no explicit discussion about funding. A fee-for-service system would limit availability to those who could afford the cost, inevitably exacerbating health disparities. However, a free assisted dying service would add pressure to already stretched services. There are already GP shortages in many parts of New Zealand and there is a significant shortage of psychiatrists in the mental health services, for the demand they face.
The Bill is not the only way to address legal liability of family members who assist with death of loved ones, as illustrated by the trial and conviction of Sean Davison. In the UK, the courts declared a set of considerations that are taken into account when police are considering prosecution of a person who assisted in someone’s death. Use of such a process could avoid unjust prosecutions without needing to change the law.
Problems with the Bill
I will not detail the fears that many have regarding the impact of this Bill on those living with disabilities and the risk of coercion of vulnerable elderly people, but I just acknowledge that many people have expressed concerns that deserve to be taken seriously.
Doctors already carry a significant emotional burden on behalf of the community when addressing suffering at the end of life. Using legislative force to require doctors to enact legislation that they are fundamentally opposed to is disrespectful. There’s been no serious attempt to engage with the profession to determine if there are enough doctors willing to enact the Bill.
Policy addressing suffering at the end of life should be holistic. System changes should address health outcome disparities, risk of harm, and a cost/benefit analysis. In my view, our priorities in this area are our most vulnerable elderly without capacity, and comprehensive provision of palliative care. We should delay considering assisted dying until these policies that we know will help have been addressed.
1. Mannix K. With the end in mind : dying, death, and wisdom in an age of denial. London: William Collins 2018.
2. Furley T. Euthanasia debate raises awareness over palliative care challenges. 2019 10/4/19. https://www.radionz.co.nz/national/programmes/checkpoint/audio/2018690451/euthanasia-debate-raises-awareness-over-palliative-care-challenges (accessed 14/4/19).
3. Hospice New Zealand. Hospice New Zealand Facts and Figures. 2019. http://www.hospice.org.nz/hospice-care/facts-amp-figures (accessed 14/4/19).
4. Anderson-Bidois J, Fisher M. This is not my home. 2018. https://www.hrc.co.nz/files/1315/3471/5450/HRC_This_is_not_my_Home.pdf.
5. Emanuel EJ, Onwuteaka-Philipsen BD, Urwin JW, et al. ATtitudes and practices of euthanasia and physician-assisted suicide in the united states, canada, and europe. JAMA 2016;316(1):79-90. doi: 10.1001/jama.2016.8499
6. Health Canada. Government of Canada releases Third Interim Report on Medical Assistance in Dying. 2018. https://www.canada.ca/en/health-canada/news/2018/06/government-of-canada-releases-third-interim-report-on-medical-assistance-in-dying.html (accessed 14/4/19).
7. Kirby J. Morally-Relevant Similarities and Differences Between Assisted Dying Practices in Paradigm and Non-Paradigm Circumstances: Could They Inform Regulatory Decisions? Journal of Bioethical Inquiry 2017;14(4):475-83. doi: 10.1007/s11673-017-9808-7