Source: NZ Doctor

Having previously been against assisted dying, specialist GP Jo Scott-Jones describes the immense privilege of helping someone die in the way they want, and offers insight into the personal and professional considerations involved

Families might share photos and flowers, but always love and support on the day of the assisted death [Image: Ron Lach on Pexels]

Key points

• If a patient asks about assisted dying, they have the right to more information.
• Assisted dying is another way of caring for someone with unbearable suffering.
• The process leading up to an assisted death can take several weeks.
• Family members are often more apprehensive than the patient.

I examined my moral compass, talked to trusted people, and came to understand that my conscience would allow me to do this

Most of us GPs voted against the assisted dying legislation in 2020. I did.

I believed that palliative care services provided all that people needed, that having this option would undermine public confidence in the system, and that it would reinforce the fear that people have of the end of life.

As a lapsed Catholic, within a limescale of residual beliefs, I still hold onto the idea of the sanctity of life and have faith that the challenging confusion and suffering that surround us is part of a bigger picture which we do not understand. (Maybe semi-lapsed.)

Once the legislation was passed, none of us could ignore the process. At the very least, we had to understand what it involved, and in my clinical leader role, I had to pass this on to colleagues and develop policy and procedure guidance for various teams.

As I watched the system develop, took part in the planning, and thought more about what was being made available to patients, a stronger feeling developed. I wanted to ensure that this was done properly and for the right reasons. I recognised that my training, clinical experience and expertise enabled me to do the work.

I could assess whether someone was in a state of irreversible decline in their physical capacity; if they had a terminal illness likely to end their life within six months; and if they were competent to decide, I could provide the medication.

I examined my moral compass, talked to trusted people, and came to understand that my conscience would allow me to do this. It met my values to relieve someone’s unbearable suffering, especially if it could not be relieved in a manner that the person considered tolerable.

As a specialist GP with a strong belief in generalism and the importance of “being there” for people at every life stage, from cradle to grave, not only could I do this, but if it was not going to be people like me, then who would do this?

I took the LearnOnline courses (learnonline.health.nz), attended the training sessions with the Ministry of Health team, and was soon referred my first patient.

First, the statistics

Cases are confidential and the story I tell is an amalgamation of experiences, but the statistics paint a picture. During the quarter from 1 October to 31 December 2022, the ministry received 218 new applications for assisted dying. Of these:1

• 82.1 per cent were New Zealand European/Pākehā
• 6.9 per cent were Māori
• 55 per cent were male
• 79.4 per cent were aged 65 or older
• 73.9 per cent were receiving palliative care
• 69.7 per cent had a diagnosis of cancer.

Most people who are assessed as eligible have an assisted death; however, again, the ministry’s statistics tell a tale. This is not the outcome for everyone.

“Attending medical practitioners completed 222 assessments; independent medical practitioners completed 156 assessments. During this quarter, 140 applications were confirmed as eligible and 102 assisted deaths occurred. During this period, 95 applications did not proceed due to the applicant either withdrawing their application; being found ineligible; or dying as a result of underlying conditions. Note that not all assessments or outcomes may relate to applications started in this reporting period.”1

Preparations and conversations

Our first consultation was in the patient’s home – most are home visits. I had allowed for a 90-minute conversation, and family and friends were present, although sometimes since it has been just the patient at the first visit. I spent time with them as a group and with the person on their own.

I indicated that I would not be making a decision on that day but was there to answer questions and to find out more about them and the situation.

This was someone I had never met before, so sharing with them some of my background, and gathering information about them, their life, their family and their work, all made it easier to progress the consultation.

I asked open questions. “What has led us to meet today?” “What are your expectations of this meeting?” “Tell me about your illness.” I asked if they wanted to know more about assisted dying and answered their questions.

With family there, I took the opportunity to explore their expectations and fears with them independently, and more particularly for the process, if there was any suggestion that a decision was being made under any coercion.

I explained I would be gathering more information, and we completed the consent form to allow me to do this. I told them there would be a second opinion, and possibly a third, and that the registrar (assisted dying) would also have to agree. This process often takes several weeks – it is not an urgent service. I told them I would be in touch.

I spoke to the person’s GP and again ascertained this was the person’s own decision, made with no external pressure. We agreed the prognosis was short and the suffering great. Although these decisions are not the GP’s responsibility, it was helpful to have my opinion confirmed by a colleague. We arranged for me to have a copy of relevant notes, and I explained that a fee could be claimed from me for these.

I did not need to talk to any specialists for my first case but have done so subsequently, usually to obtain further evidence to help with confirming prognosis.

The second opinion took a few weeks to come through. Then, I arranged a further visit to the person’s home to explain they were eligible. This news was greeted with joy from the patient and supportive comments from the family, but it was clear they carried a lot more anxiety and fear than the person planning to die.

It has often been the case that the family have been the most apprehensive. After all, they do not want their relative to die, ever, and the idea of this happening on a specific date, at a defined time, is difficult to process. They need a lot of support and reassurance, but usually focus on supporting what their whānau member wants.

The individual now has another tool in their toolbox to deal with their unbearable suffering. The fact of simply having this option can bring great relief. They can always defer or bring forward the date once they are found to be eligible, and they can withdraw from the decision at any time. They have control over something that was otherwise out of their hands, unknown and unknowable. For them, there is light at the end of the tunnel.

We confirmed a date and discussed whether they wanted to have oral or injected medications. Did they want me to administer them, or did they want to do this themselves? They made their choice.

My patient set a date a few weeks ahead, planned with whānau a series of events over the coming month to say farewell, and developed a detailed timetable for the day itself.

I completed the final set of forms and received the medication kit a few days before the date that had been set. I phoned again, to let them know everything was in place and to confirm we were still on track for the agreed date and time.

The first time

On the day, I got to the home an hour before the agreed time of death. I knew what to expect on my arrival from the planning discussions. Sometimes, there is a houseful of people, balloons and a party in progress. For others, it’s a more muted gathering of family and friends. For each case, they have made the day and setting as they wanted. There have been karakia, there have been prayers, there have been tales of past glory, family photos and flowers, and there has always been love and support.

I have not yet had to help someone who does not want family to know or be involved with their care, but this may happen. This is an individual’s choice.

I spent some time alone with the person, confirmed their intent to continue and prepared to deliver the medication. At the agreed time, the family gathered around the bedside, lay with them and held hands.

I started administering the series of medications, then took a seat in the corner of the room, allowing the family to be where they needed to be. After the first medication, the patient was asleep; after the second, deeply asleep; and after the third, their breathing had stopped. Some family wept quietly, while others just sighed.

I made myself absent for 30 minutes. On return to the room, I confirmed death and began removing the equipment that had been used, tidying up and getting ready to leave.

The family asked me to stay for a cup of tea. They wanted to tell me they were grateful, amazed at how peaceful and straightforward this had all been, and how their fears of mess and struggle were not realised.

They kept saying how this was exactly what their relative had wanted; they were now at peace.

As they called the funeral director, I left the home, drove to a quiet place and reflected on what had just happened. I had been nervous about the technicalities – mostly about the delivery of medication. As this was my first time providing this service, I had been anxious about how it would look and feel. For me, it felt like it was simply the right thing to do for that person. This was another way of caring for someone with unbearable suffering.

I completed the death certificate online and informed their GP that they had died.

An immense privilege

I want to encourage GPs and nurse practitioners to get involved in this service. It can be something to have in your armoury to help just your own patients, or you may feel able to become a provider for people more widely in your region. I respect those with a conscientious objection to this service but note that if a patient asks about assisted dying, they have the right to more information.

It is an immense privilege to support someone and their whānau through the decisions around assisted dying. While administering the medication itself is challenging, by the time this is happening, you have got to know the person well, the rationale is clear, their choices made and the alternative of unbearable suffering that cannot be relieved in a manner acceptable to that person, untenable.

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

More information about training and the service can be found on the ministry’s website: tinyurl.com/MOH-AssistedDying