End of life Choice Act 2019, COVID-19, and New Zealand adults over 60 years
Vulnerabilities, safeguards and understandings
October 13 2020
Euthanasia and assisted suicide is a deeply contentious and complex social, ethical, and medical issue in New Zealand. On 16 November 2019, the End of Life Choice (EOLC) Act was given Royal Assent and as most are now aware, the binding referendum being held at this year’s election decides whether or not to implement the Act.
A study underway by Dr Rosemary Frey and Dr Deborah Balmer in the School of Nursing is examining the EOLC Act in light of key issues in the literature which suggest that socially vulnerable populations may be at increased risk for over utilisation of euthanasia and assisted suicide (EAS)(1). It also explores whether the life-changing COVID-19 pandemic experience has altered perceptions of assisted dying.
Older age is often accompanied by multi-morbidity(2). Living longer in old age could more frequently be accompanied by complex conditions requiring special care (3, 4). In addition, as people age, they tend to rate their health more poorly (5) and are more likely to receive institutional care (8). Studies highlighted that the loss of autonomy, dignity, and engagement in enjoyable activities are the predominant motivators for people choosing assisted dying (6,7,8,9).
Some older adults may communicate a wish to die. This may be a true expression of a desire for autonomy, but it may also be a reaction to an ageist society, an older person’s worries about being a “burden,” and to the inferred wish of the larger society to be “rid” of such “burdens”(10). Ageism is relevant to the analysis of resource allocation and determinations of the futility of treatment (11). To date, the majority of the literature has been focused on persons with developmental disabilities and children (12,13,14). Those whose lives are most likely to be affected by the Act are those who are isolated, marginalised, and politically invisible. Older people may qualify as vulnerable in the context of the Act and their views are vital.
The researchers are conducting an anonymous postal and online survey of adults 60 years and older to elicit knowledge and perceptions of, and attitudes towards, the Act as well as other life-ending practices, namely EAS. Potential participants were approached through organisations with predominantly older adult membership. Organisations either had no official position or represented a diversity of opinion on the Act. Some initial insights from the unpublished data collected so far follows.
Who are the respondents? Opened in July this year, responses to date have been received from 636 older adults, (64% female, 36% male) the majority of whom identified as NZ European (81%) with other European (10%) being the current second highest ethnicity. Ages ranged from 60 to 91. Slightly over half (54%) reported that they were retired. Only 14% reported working in healthcare, however 82% reported they had accompanied someone in death. Respondents over 70 years of age (53%) were more likely to report an affiliation with a religion.
Do respondents distinguish between assisted dying and suicide? Respondents were asked, “What is the difference between assisted dying and suicide?” For 23%, the answer to this question was that there is no or little difference between assisted dying and suicide more generally, including responses like “None”; “Assisted-dying is a euphemism”; “Both mean I want to die” and, “Same…as they are both voluntary decisions”. For nearly 60% of respondents, the differences concentrated around the involvement of another person/people in the death to distinguish assisted dying. However, the views around the nature of that involvement varied and included responses such as “Very little except that another person is helping to kill so worse than suicide”, and “When someone has legally been given permission to end a person’s life”. Others pointed to the difference in motivations to die and health conditions (e.g. mental health) as a distinguishing factor between the two and thus were different:
“Suicide is caused by mental stress”; “Assisted dying is a choice decided upon in advance after having thought out all the pros and cons” and “Assisted dying is by request to avoid pain when having a terminal illness, and being assisted to do so”; “Suicide is a personal (and usually impulsive) choice in taking one’s own life, without involving others”
Do respondents support the legalising of assisted dying? Respondents were asked the question “Do you think assisted dying should be made legal in New Zealand?” In comparison to a recent Colmar Brunton(15) poll of registered voters, respondents to the survey overwhelmingly said “No” (87%). Strength of religious and spiritual beliefs may have shaped this opinion. Those who did not support legalisation were significantly more likely to have reported being either very religious (62.1%) or very spiritual (71%). Respondents were asked to select the top three reasons for their answer their answer. For the 13 percent in favour of legalisation preventing pain and suffering (76 persons) and inability to control pain by other means (67 persons) and ability to still make the decision (66 persons) topped the reasons. For those against legalisation the top three reasons included the expectation of vulnerable groups to use the service to save resources (492 persons), the belief that a doctor’s role is to heal (484 persons) and the risk of misdiagnosis, the presence of depression or potential for a cure in the future (468 persons). Interestingly, the majority of participants felt that the experience of COVID-19 had not changed their opinion about legalising assisted dying (81%).
The survey closes on the 18th of October after which further analysis will be done on the data pertaining directly to respondents’ understandings of the EOLC Act. The researchers aim to disseminate the knowledge gained to inform lawmakers, health professionals, lawyers, advocates and the wider public of the perceived vulnerabilities older adults identified through the research. If you are a member of or know of an organization that might be interested in participating please contact:
Dr. Rosemary Frey
Senior Research Fellow
Dr Deborah Balmer
Research Fellow