Introduction
This case concerns access to assisted dying and determination of competence to make an informed decision to choose an assisted death. On 31 August 2021 a man who was at the end stage of a progressive, debilitating neurological disease was assessed as not expected to survive beyond four months.
Prior to moving to a new residential care facility in January 2022, the man had initiated a discussion on accessing an assisted death with the general practitioner (GP) who was providing services to the care home where he was residing at the time. However, after moving to his new care home, the man’s daughter was told by the GP providing services there, that the man would not meet the competence requirements for an assisted death. In the absence of a formal and complete competence assessment, this was incorrect.
Subsequently, the man was able to access an assisted death after his daughter contacted Support and Consultation for End of Life New Zealand (SCENZ).
Around the time that he was determined to be eligible for assisted dying (via a process assisted through SCENZ), the man’s daughter was informed by the care home manager that the care home did not support assisted dying on its premises, and alternative arrangements needed to be made. The man’s daughter made several attempts to arrange another venue, including a room at the local hospital. Although the hospital had a room available, the hospital would not confirm that the room would be free until the morning of the procedure. This was a significant factor in the family’s decision not to use the hospital’s facilities.
Findings
GP — adverse comment
Health and Disability Commissioner Morag McDowell considered that the GP who concluded that the man did not meet the competence requirements for an assisted death undertook an assessment of the man’s competence, albeit informal, without having the appropriate knowledge and information of the assisted dying competence assessment process. The GP did not apply, conduct, or document the appropriate competence assessment required to reach the conclusion that the man was incompetent and therefore ineligible for an assisted death. The GP also made incorrect assumptions about the man’s inability to communicate. This led to the GP expressing an opinion on eligibility, giving a false impression that the man’s ability to choose an assisted death was restricted, which caused distress to the man and his family. Given the GP’s lack of training and knowledge, it would have been appropriate for the GP to advise the man and his family to seek formal assessment from an Attending Medical Practitioner (AMP) and to contact SCENZ for assistance.
Mitigating circumstances included possible ambiguity in the advice on assisted dying available at the time, and the relative newness of the End of Life Choice Act 2019. The Commissioner also considered independent clinical advice that deficiency in knowledge of the capacity assessment process in general is not uncommon amongst doctors.
Given the context within which the GP was providing services, the Commissioner elected to take an educational approach to the deficiencies in the assessment and made recommendations (outlined below).
Aged care residential service — educational comment
It is within the rights of a residential care facility to decline to provide assisted dying services on its premises. Nevertheless, it is the Commissioner’s view that this is information that a prospective resident and their family interested in pursuing assisted dying are entitled to know in order to make an informed decision about whether or not to enter into a service agreement.
Staff appear not to have been fully aware of the organisation’s policy, which states that it will not offer assisted dying services within its facilities, and staff had to seek confirmation of the position. Had they been aware of the policy, they could have proactively explained the care home’s position on assisted dying earlier than occurred (indeed before the man shifted there).
This case represents an opportunity for the provider to remind staff of its position on assisted dying and clarify that position if needed. This will enable staff to provide a timely response to those residents and prospective residents who indicate their interest and/or involvement in the assisted dying process.
Health NZ|Te Whatu Ora (Health NZ) — educational comment
Although a room was available for the man to undergo an assisted death at the local hospital, the process for final approval required a significant number of conditions to be met. This included the right for hospital staff to postpone or reschedule for unforeseen capacity or emergency requirements, and for final confirmation of an available space to be made only on the morning of the agreed date for the procedure.
The uncertainty of a room being available on the agreed date led to the man and his family not pursuing the hospital option as a location for his assisted death. The Commissioner noted that the indication of a potential ‘day of the procedure’ postponement is not consumer or whānau centred and arguably is a deterrent to the use of hospital facilities for assisted dying.
Recommendations
Commissioner Morag McDowell recommended that the GP provide a formal written apology to the man’s family; complete the Ministry of Health e-learning modules on assisted dying and the End of Life Choice Act 2019; and complete the Goodfellow Unit training on the clinical and legal aspects of decision-making capacity.
Ms McDowell recommended that the residential care home provide refresher education to its staff on the End of Life Choice Act, the organisation’s position on assisted dying, and staff roles in supporting the policy.
Ms McDowell recommended that Health NZ’s national office review its policies on access to assisted dying services in its hospital settings, reflecting on the comments made in her report.