Get your act together: The first time a person asks about assisted dying

• Every clinic must decide how they will apply the End of Life Choice Act 2019 and which staff members will be involved.
• Every staff member should access the assisted dying resources made available by the Ministry of Health, understand their responsibilities, and know what to say when they are approached.
• All communication about the service and who is providing it is regulated under the act.

It is expected approximately 700 people a year will want to use the service

The last person who asked me about an assisted death had motor neurone disease. He was a vigorously fit man, slightly older than me, and the diagnosis was devastating. Over the following year, he did everything he could to slow it down, including a hope-filled trip to a clinic in Mexico, but he saw the inevitable progression happening and did not want to “choke to death”.

I promised him, and think we achieved, a dignified death. He was under sedation, at home with whānau, but to say the months running up to this were “comfortable” would be to totally deny what mattered to this man.

We will all have similar stories; these situations leave scars.

At that time, I had the luxury of saying that to accede to his wishes, to give him a “shot” so that he didn’t have to go through this, was illegal. I was protected by the law from having to challenge my ethical framework.

In general, I prefer to leave my moral cellar unexplored and not think too often about how crumbly it might be down there, built as it is on a foundation of Catholicism that, over the years, has been undermined by science, personal experiences and the moral turpitude of organised religion.

From 7 November, it will be possible for patients to request an assisted death in New Zealand, and none of us will have the “easy out” of the law. The decision whether or not to provide this service will become much more conscious and considered.

Resources available

Implementation of the End of Life Choice Act 2019 is being supported by a hard-working team at the Ministry of Health who have produced a number of materials, learning courses and webinars to help health organisations and professionals prepare. These are available on:

• the ministry’s website (tinyurl.com/EndOfLifeChoiceAct)
• LearnOnline (learnonline.health.nz).

Because patients will want to talk about this to anyone and everyone who works in health, it’s important that every staff member links in to these resources, and every GP team has a “set piece” discussion about how they will apply the act when the time comes.

This is complex and requires clear surgery-level policies, procedures, processes, education and regular review to avoid causing concern to staff and patients.

Many questions to work through

Will anyone in your clinic be providing this service? If not, how will you support people to access the service? How will you manage the emotional impact of someone making the request and being referred on? How will you support people who do provide the service? How will you support whānau of the patient, some of whom may object? How will you manage the impact of different opinions within your team? It’s a minefield.

Every clinic needs to work through how they will manage whether or not any of the staff will be actively involved, sensitively and in a way that keeps everyone safe.

Communication is regulated

Consider just one aspect of the act – communication.

It might be at a dinner party, barbecue or a kid’s sports event, but people will be curious about what the act means for them, or their relatives, in the future.

It is expected approximately 700 people a year will want to use the service – you may already know who some of them will be. They may approach you, a receptionist or other clinic staff member to suss out where you stand. Staff members will need to know what to say when they are approached.

The law is very clear, and this trumps the Code of Health and Disability Services Consumers' Rights. Take my patient with motor neurone disease as an example.

Had the act been implemented at the time, I could not have discussed the option of an assisted death unless he himself had raised this as an issue. If his wife had told me he wanted to talk to me about it, I could not have prompted or approached him to raise the topic.

Had he asked “What are the options for managing the end of my life?” I would have been able to talk about all other aspects of palliative care, but not unless he personally asked specifically about an assisted death would I have been able to discuss that option.

Assuming, like the majority of medics, I was to take the stance of “conscientious objector” to the act, I would have been obliged to inform him of that objection, and to tell him of his right to access services of an alternative medical provider through the Support and Consultation for End of Life in New Zealand (SCENZ) group.

I could have helped him access his appointments, I could still have cared for him and his whānau, but I would not have been involved in any further decision-making or care relating to assisted dying. Most importantly, I must not have impeded access to the care he had requested.

All communication about the service and who is providing it is regulated under the act.

First, you save yourself. No one can make public the method, place, person or organisation involved in an assisted death. This is not a topic for dinner party talk.

Now is the time to make sure everyone in your team understands their responsibilities, because it’s complicated and it will be easy to get it wrong. What we can be sure about is that this is going to be an area of extreme public scrutiny for many years to come.

Jo Scott-Jones is medical director for Pinnacle Midlands Health Network, has a GP practice in Ōpōtiki and works as a GP across the Midlands region

Details have been changed to protect patient confidentiality