I received an email from someone wanting to undergo an assisted death.
I replied with general advice that was available online on the New Zealand government’s assisted dying website.
The person replied outlining their situation. They had been approved for an assisted death by the national service. Their residential care facility which had been home for the past four months would not allow assisted dying to occur on its premises. Their local hospice had made it clear that they would not be an option.
I explained that we had initially planned to offer our venue for people in our catchment area, but would consider cases from elsewhere. I promised to consult my team, and we agreed that we would be able to provide a venue. An onsite meeting and tour of our facilities was arranged, scheduled for a time when the patient’s family would be available. This would be the first time that we would meet a patient accessing this service, which made us feel nervous.
The hospital palliative care nurse called me to refer a lady in her late 80s who prior to admission had lived independently until she started falling over. It was minor slips with minor injuries, then moderate trips with moderate injuries. In the past week she had a major fall, resulting in life-threatening injuries. Hospital tests showed that her chemical balances were all out, that a lot of bones and organ tissue had been replaced by cancer. The reason that she had lost her physical balance was that the cancer had invaded her spine, crushing the spinal cord and rendering her lower body weaker and then paralysed. She could no longer move her legs, but unfortunately could feel pain, and in fact her legs had become hypersensitive to pain. The bundle of nerves that make up the spinal cord do not like being pushed on, and scream out in protest.
During her week in hospital she had almost died twice. Each time, somehow she had recovered. Each time she was left devastated that she had recovered. From being fully independent, she had become fully dependent, a situation that she found impossible to tolerate. She had some stern conversations with The Almighty, she was not happy with what he had chosen for her. Her beloved husband had died over 30 years ago and there wasn’t a day that she didn’t think about him. She wished to be at his side again.
She asked the nice hospital palliative care nurse about the assisted dying service that she had heard about. Printed information was provided which was read and digested, with some difficulty as the pain in her legs and bottom still bothered her despite the pain relief she was given. She thought that she would qualify for assisted dying, having met all of the eligibility criteria and still maintaining her decision making capacity. The palliative care nurse said that no-one in the hospital provided the service, but that a referral could be made to the Ministry of Health in order for them to assign a practitioner to her. A process that would usually take two to six weeks to complete. Her ward team made the referral to the national service.
In Aotearoa/New Zealand the End of Life Choice Act 2019 will be enacted into law on Sunday 7th November 2021. Written in the voice of someone who is considering accessing assisted dying is a further conversation that they might have with NZ Hospice/Palliative Care, if only they would deign to listen.
The last time we talked I was not at my best, I was angry, upset and scared. I’ve had time to reflect and have looked at things from some other viewpoints. This is not an apology because I need you to see me as I am, I don’t want to have to pretend in front of you. I need you to understand how I feel, and what I am going through.
Thank you for not running away, like the others did. You said that you have similarly emotionally intense conversations all of the time, and that you have been trained to be able to handle them. You certainly used it to take the opportunity to get to know me better, and to explore my fears.
That being said, I shouldn’t have sworn at you, that is not me. I am usually much better at controlling myself. My anger was not just directed at you, I’ve been through many frustrating interactions during this illness journey, and it all just exploded the last time we met.
St Joseph’s Hospice was founded in 1967 by Cicely Saunders in order to help cancer patients for whom medicine had nothing else to offer. Often these patients would suffer from the effects of their illnesses and died in miserable circumstances which were distressing to both patients and their families. Over the next decades hospice/palliative care services developed all over the world, and practitioners pride themselves on being patient-centric. Hospice/palliative care staff value their communication skills, and listen actively in order to find out what their patients need. They try to offerbespoke care customised to the individual patient and their family.
In New Zealand on 07 November 2021 the End of Life Choice Act 2019 will be enacted which will mean that people with less than six months to live who have intolerable suffering and fulfil the criteria can legally access assisted dying services. New Zealand Hospice and Palliative Care organisations around the country have put forward a viewpoint that they are not supportive of assisted dying, and have largely not engaged with the subject at all despite it becoming legal and available in five days’ time.
What if NZ Hospice/Palliative Care was to try to empathise with someone with the opposing point of view. What if it was to put itself into the shoes of a person considering accessing assisted dying services? What might such a person have to say to them?
So the last few days has been interesting for me. As GoGently Australia launched their latest campaign to advocate for assisted dying legislation, I’ve been removed from the public response in Australia, while attending the ICEL conference in Halifax. It’s been a great chance to hear about recent developments in Canada, and reflect on the data and some of the ‘lived experiences’ of practitioners, family members and patients, which has emerged through recent research.