Ending Well: The Urgent Case for Accessible Palliative Care

Categories: Education, Featured, Opinion, and Policy.

Whether the cause is COVID-19 or something else, death is inevitable for all of us. A good death, however, is not. In spite of the care, expertise, and knowledge now available, bad deaths are unfortunately all too common for many New Zealanders.

Palliative care is an important ingredient for good end of life care—even when the person has complex medical issues or has struggled with significant pain. It is an approach that “prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”

Studies have shown that palliative care can result in improved quality of life, an increased life expectancy and, due to lowered interactions with the hospital and admission process, can relieve financial costs on the healthcare system. One study found, for example, that “involvement from palliative care was associated with significantly lower hospital costs in the order of $5000-8000 (Australian dollars) for all patient groups, but most particularly for non-cancer diagnoses.”

For too many New Zealanders, however, good palliative and end of life care is out of reach.

As demographics change and New Zealand’s population ages the number of people struggling to access palliative care services is growing rapidly. In fact, studies project the need for New Zealand palliative care services to increase by half in the next 20 years, and almost double in the next 50 years.

New Zealand’s health system is currently undergoing significant reform, through systemic changes as well as with the introduction of legalised assisted dying.4 With these changes underway it is essential that palliative care services are
not forgotten, but get the necessary attention and support so that all New Zealanders have the best opportunity for a good death.

This paper identifies five key areas where policy changes could improve access to palliative care services for New Zealanders:

  1. Governance and strategy—ensuring that strategies, plans, and data are relevant and up-to-date so that New Zealand’s services can best “meet rising demand for care.”
  2. Public awareness—increasing New Zealanders “death literacy,” or understanding of the dying process and care options available, so that families, whānau, and communities are equipped to support one another to the very end of life.
  3. Training, support, and education—increasing availability and enhancing training so that everyone who plays a role in caring for people at the end of life—whether that be specialist physician, primary carer, family, or whānau—feels equipped and able rather than distressed and unprepared.
  4. Funding—appropriate increases and targeting so that sufficient palliative care services are available and the need for surviving on “cakes and op shops” is reduced.
  5. Accessibility—increased and improved regional and cultural accessibility to palliative care services so that care is available for all New Zealanders.

Our recommendations in full:

Governance and strategy:

1. The Ministry of Health should evaluate the progress of the 2017 Palliative Care Action Plan’s priorities and produce an updated Palliative Care Strategy and Strategy and Action Plan.
2. Parliament should maintain the All Parliamentary Group on Palliative Care and ensure information on its members and meetings are publicly available.
3. The Ministry of Health should collect and report consistent data on the provision and availability of palliative care services in New Zealand.

Public Awareness:
4. Hospice New Zealand and the Ministry of Health should work together to promote public awareness of hospice and palliative care services in New Zealand.

Training, support, and education:
5. The Government should mandate at least 72 hours of undergraduate palliative care training in the course of a medical or nursing degree as well as additional clinical practice.
6. The Government should mandate ongoing professional development in palliative and end of life care for every medical and nursing practitioner.
7. The Government should mandate palliative care training for all residential care staff.
8. The Government should allocate seed funding for a pilot programme to be developed that provides training and support for families, whānau, and caregivers.

9. The Government should increase targeted funding for providers of New Zealand’s palliative care services.

10. The Government should prioritise palliative care training and support for medical practitioners based in regional New Zealand.
11. Specialist palliative care physicians should utilise technology to increase access to specialist palliative care in regional New Zealand.
12. The Ministry of Health should ensure access to specialist palliative care support as a minimum requirement for all New Zealand hospitals.
13. The Government, medical and nursing schools, and palliative care providers should work with important Māori stakeholders (such as Māori social service providers and local iwi) to listen, learn, and reduce cultural barriers to palliative care.
14. The Government should incentivise an increase in the Māori palliative care workforce.
15. All providers of palliative care should consider implementing the appropriate recommendations outlined in “Mauri Mate: A Palliative Care Framework for Hospices.”
16. Palliative care providers should seek to fulfil the “six critical elements” of culturally sensitive palliative care services.

Death may be inevitable for all of us, but bad deaths don’t have to be. Giving all New Zealanders access to high quality palliative care services must be a priority. Urgent changes are needed so that all New Zealanders—no matter their postcode or cultural background—have access to this care. The recommendations we outline are an important step toward overcoming rapidly increasing demographic challenges. Most importantly, however, these changes will ensure that every New Zealander has the best chance of a good death, when the time comes.

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Summary extracted from Ending Well: The Urgent Case for Accessible Palliative Care, a discussion paper written by Danielle Van Dalen and published by Maxim Institute.

To read the full paper, please click here.

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