A letter to UK parliamentarians from Tina McCafferty, CEO of Tōtara Hospice, New Zealand. Dear Parliamentarians….
As you start your deliberations on the Terminally Ill Adults (End of Life) Bill on offering terminally ill adults greater choice at the end of life, I wanted to share with you the positive experience we have had at Tōtara Hospice, one of New Zealand’s largest and most socio-economically diverse specialist palliative care providers, since we started to offer an integrated voluntary assisted dying service as an end-of-life choice.
Our story is about how we kept and continue to keep the patient’s voice—the person living their dying—front and centre in all our decision-making processes as we navigated one of the most contentious ethical challenges of our time.
As law change began to look imminent in New Zealand we asked ourselves:
As specialist palliative care providers, wasn’t dignity, autonomy, and respect for patient choice central to our organisational fabric? Could Tōtara Hospice support legal voluntary assisted dying without undermining our values as a specialist palliative care provider?
We answered “yes” to both.
For us, patient centred care is paramount. If the patient voice is lost, public trust in palliative care to uphold the dignity and autonomy of individual patients at the end of their life would erode; and the public would lose faith in the palliative care sector that has long promoted itself as being the experts in care of the dying and had long prided itself on values of compassion, dignity, and relief from suffering. The stakes were high. We needed to engage in honest and careful inquiry into assisted dying.
Through a robust period of exploration, we realised there was nothing in the values of palliative care that was in conflict with supporting a terminally ill individual to be supported to have an assisted death if it were to become a legal choice.
In light of accepted practices of pain management, cessation of eating and drinking, refusal, commencement, or withdrawal of life sustaining treatments, we saw it as disingenuous to use just one sentence of the comprehensive WHO definition of palliative care, ‘neither hastening or postponing death’, as an all-encompassing definition in a contemporary world with changing and evolving social norms and expectations.
We found as a hospice service, just like with any other aspect of palliative and end of life care, it was our place to support, to honour and to enable informed choice.
New Zealand’s End of Life Choice Act 2019 includes clear and narrow eligibility criteria, multiple assessments and a robust monitoring and accountability framework. It offers a way to safely and legally recognise the needs of the dying person. Accordingly we put our values into action and developed policy and procedure, making our commitment to patients clear – you are the driver of your own journey. We started to offer integrated voluntary assisted dying service as an end-of life choice in late November 2021. That service is headed by our dedicated team – Medical Director/Palliative Medicine Specialist/Chief Nurse Advisor/Nurse Practitioner/Director of Clinical Services and Senior Counsellor – who role model their commitment to patient-centred care each day.
From the frontline, from our patients who we have supported in an assisted death and who have taught us so much, we can tell you that the choice of an assisted death is about an individual’s desire to ease their own suffering (physical, spiritual, mental). It is about their desire to manage their own inevitable death on their own terms as they, the person with the terminal illness defines it. Not others. It puts the choice about what is ‘dignity’, what is ‘without suffering’, what is ‘on my terms’ firmly in the hands of the patient.
We have received hundreds of phone calls, letters, emails, texts from terminally ill individuals, families, the general public, healthcare providers, palliative care providers, academics and even clergy thanking us for having the courage and compassion to support patient choice and the leadership to implement an integrated service.
Patients tell us about the relief they feel: “I am all set up. I will have my assisted death when the time comes. I have you Tōtara, not yet, but when I am ready, I will have no problem. It gives me such great relief.”
Families tell us that they feel supported: “It was beautiful. It happened the way it was wanted, calm and filled with love.”
Clinical staff tell us that they feel privileged to be part of this journey: “It was a blessing to be able to support them in the way they wished.”
So, I can say with absolute certainty, that over the last four years within Tōtara Hospice, offering an integrated assisted dying service as an end-of-life choice for patients has been, and remains the right thing to do for those in our care who wish that choice, and is not at all at odds with our values, approach and principles.
I wish you well in your deliberations and welcome any questions you may have.
Tina McCafferty
Chief Executive
Te Kahu Pairuri o Tōtara
Tina McCafferty <tina.mccafferty@hospice.co.nz>
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ehospice is pleased to publish articles on all sides of this critical debate. We do attempt to balance out views though this depends on the articles sent to us. If you have an article or related blog please send to: info@ehospice.com
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