We thank Dr Sinéad Donnelly for her considered and personal comments1 about our recent paper2 in the NZMJ.

Donnelly writes that “care of the person who is dying is not an issue for debate”. We respectfully disagree. What constitutes care of the dying person must be examined and deliberated if it is to reflect what patients (and their families) want.

Our study clearly found that the care given to some dying people (friends and family of our participants) was experienced as inadequate and poor, leading them to wish for an assisted death were they ever to be in a similar situation.

We agree with Donnelly that better medical care for older people is needed, especially near the end of life when patients are uniquely vulnerable to the medical care they are the recipients of (for better or worse).

The issue of ‘being a burden’ was one of several themes that arose from our interviews with participants. Although some of our people spoke about their concern at becoming a burden on others, many spoke of their fear of becoming a burden on themselves. In other words, they feared becoming someone they did not want to become—someone they no longer recognised. This was voiced as a fear of losing independence and of increasing dependence.

We should not necessarily view this concern as a reflection on society’s lack of care towards older people as Donnelly suggests, but rather as a way in which some people view losing control of one’s life. Thus one important aspect that arises is how society responds to the person who believes they have come to the end of their life and who wants the right to choose how they would wish that end to come.

A person may wish to end their life at a time of their choosing rather than using their financial resources to sustain a life which they no longer value, preferring rather to leave that money to benefit others (either in the community or their own families)—and that is also what our respondents said. 

One of the findings that came out of this small study was a need to further explore what ‘being a burden’ means for people. As Donnelly rightly notes, we are all burdens on others at various times in our lives. If a person has lived their life making authentic choices and decisions for themselves (and others they deeply care for), fearing becoming a burden at the very end of life may be something they are not prepared to accommodate or accept.

Whilst we agree with Donnelly that such a reason (for an assisted death) is not a reason to legislate for euthanasia, it is a reason to listen very carefully to their choices around medical care at the end of life especially if a patient is refusing medical treatment that is life-sustaining.

Donnelly disagrees with our claim that euthanasia is legalised in carefully qualified situations, and quotes the work of Margaret Somerville and others to show that a slippery slope exists in both Oregon and the Netherlands. However there are many prominent scholars and researchers who challenge that view. For instance, Margaret Batten et al,3 state that in relation to vulnerable people, “there is no current factual support for so-called slippery-slope concerns about the risks of legislation of assisted dying – concern that death in this way would be practiced more frequently on persons in vulnerable groups”.

Of course this does not mean that abuses could not happen; it means that a society in which assisted dying is legally permissible must be vigilant to ensure procedures are in place to protect vulnerable people.

Dutch researchers4 recently assessed frequency and characteristics of euthanasia, physician-assisted suicide and other end of life practices in 2010, and assessed trends since 1990 in the Netherlands. They conclude that “euthanasia and physician-assisted suicide did not shift to different patient groups and the frequency of ending life without explicit request continued to fall” (Ibid., 8).

Donnelly claims that “legalisation of euthanasia creates societal pressure on vulnerable populations, such as people with disabilities, to end their lives”. Presumably the same could be said for legally allowing adults to refuse any medical treatment and care even when such a decision leads to certain death: this is every New Zealander’s right under the Bill of Rights5 and the Health and Disability Code of Consumers’ Rights.6

We do not wish to be pedantic but on such an emotional topic, language is important. Donnelly comments on, “healthy older people advocating euthanasia”. Although our participants are members of an organisation that supports legal medical assistance in dying, in this study they were not advocating euthanasia; rather they discussed their reasons for supporting the availability of a medically assisted death.

But perhaps more importantly, the questions and concerns that Donnelly raises in her paper about end-of-life care in New Zealand are crucial and must be addressed. We need more discussion and research that explores what New Zealanders think about medical hastening of death so that what is significant to people can be addressed.

For some people, better palliative care (or even access to palliative care) may be the answer in addressing and ameliorating end of life concerns; for others it may be access to an assisted death at a time of their choosing.

Do our doctors and nurses consider assisting a patient to die (in some circumstances) part of their professional role? What do patients who are terminally ill want? What do our disabled community want?

In many cases we simply do not know; but we ought to be asking. To that end we have recently completed interviewing older New Zealanders who are opposed to medical practices that hasten dying.