Defining New Zealand Palliative Care: A Discussion Document
Nathaniel Centre Staff
Issue 19, August 2006
The challenges and needs of people at the end of life are multifarious. In the first instance the priority is to enhance quality of life by providing relief from pain and other distressing symptoms. This calls for a holistic approach to care that integrates the physical, psychosocial and spiritual dimensions, and that also takes account of the needs of families/whanau and other caregivers who are accompanying and caring for the dying person.
The desire to provide integrated and holistic palliative care to persons "of all ages with a life-limiting illness, with little or no prospect of cure, and in whom death is the likely outcome", is ultimately an affirmation of the fact that dying is a normal process, an important part of living. That this is so underlines the importance of all New Zealanders having ready access to comprehensive palliative care throughout the course of a life-threatening illness, whether death is "hours, days, weeks, months or sometimes years away."
In 2001 the Ministry of Health released the NZ Palliative Care Strategy with the aim of setting in place "a systematic and informed approach to the provision and funding of palliative care services." It is readily acknowledged that current inequalities exist within the national approach and that these "include access for Māori, Pacific peoples, isolated communities, children, the very old, those with non-malignant disease, as well as those with special needs: asylum seekers/refugees, people in prison, and those with mental illness."
In order to make the Palliative Care Strategy a success, and to help address the inequalities, a Palliative Care Subgroup of the New Zealand Cancer Treatment Working Party has prepared a Discussion Document that focuses on "palliative care definitions". Why the focus on definitions? "Definitions form the basis upon which a comprehensive, cohesive and effective palliative care service can be built and sustained. They help clarify core service components, elucidate structure, and promote understanding. They are also a key component for national palliative care service specifications."
While the document draws on the 2002 World Health Organisation palliative care definitions, it readily acknowledges the importance of defining palliative care in a New Zealand context. To that end it highlights five key factors critical to New Zealanders:
- The fundamental place of the Treaty of Waitangi and the Māori Health Strategy, and the need to acknowledge the holistic Māori philosophy/model Te Whare Tapa Wha and its four dimensions: psychological health, spiritual health, physical health and family health.
- The changing nature of society, disease and illness and expectations within New Zealand.
- The need for Palliative Care support to be dynamic, reflecting changing needs, and to be available throughout the course of a life-threatening illness according to need.
- Delivery of services through an integrated approach that seeks to include the family, and in which there is a place for palliative care specialists as well as generalists such as the general practice team.
- The need for a patient's primary care team (eg general practice team) to provide continuity of care.
Generalist palliative care is defined as community based care provided as an integral part of routine standard clinical practice. Some generalist providers will have ongoing contact throughout and following illness, while others such as district or ward nurses will have episodic contact depending on need. Providers of generalist palliative care will have defined links with specialist palliative care for support and advice and in order to refer patients with complex needs. Specialist palliative care is provided by Hospice based community services or hospital based palliative care services, both with expert interdisciplinary teams of health professionals who have undertaken specific training.
It is envisaged that specialist palliative care provision will work in a 'direct' way – providing direct management and support – and 'indirectly' – providing advice, support, education and training of other health professionals and volunteers to support their generalist approach to palliative care provision.
"Depending on the complexity level of palliative care need, smaller (level 1) specialist palliative care services will at times require input from a broader and more developed service (level 2) which may be geographically distant [but] ... readily available through defined linkages and processes."
In founding the hospice movement its pioneers had as one of their primary goals the ongoing education of the medical and nursing profession and the wider community. The discussion document reflects this in its wording. There is considerable emphasis on the role of specialist palliative care providers providing comprehensive education for the local generalist care providers and also coordinating an education programme for specialist palliative care regionally. The specialist providers will also have "organisational quality and audit programmes."
The document is written in language that is readily accessible.
The document is for the widest dissemination and feedback on it is sought particularly from those at grass roots level involved in care provision, as well as those involved in managing, planning and leading services.
Feedback may be sent to Anne MacLennan, Chair of the Palliative Care Subgroup of the NZ Cancer Treatment Working Party (NZCTWP) at the following address:
c/- Nick Polaschek
Senior Project Manager/Team Leader
DHB Funding and Performance Directorate, MOH
Ministry of Health, 1-3 The Terrace, Wellington