Issue 100, March 2008
Palliative Care Partnership
Palliative care is described by the World Health Organisation and adopted by the Ministry of Health (2001) to be "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and…assessment and treatment of pain and other problems, physical, psychological, and spiritual. . Palliative care also supports the bereaved family and whanau. (Minister of Health, 2001).
The New Zealand Palliative Care Strategy identified the importance of equitable access to palliative care for all New Zealanders regardless of disease or place of residence. Traditionally, palliative care had been associated with the care of people with cancer but the principles of palliative care are applicable for all people with a life threatening illness.
Te Omanga Hospice is the local palliative care provider in the Hutt Valley. In 2002 the Hutt Valley District Health Board entered into a partnership with Te Omanga Hospice to meet their commitment to the New Zealand Palliative Care Strategy. The overall goal was to improve the integration of palliative care and other health services and to increase health professionals understanding and application of the principles of palliative care.
Since the opening of Amaryllis House, the specialist Huntington's Disease unit, a strong link has developed between the two services. Te Omanga is available to support Amaryllis House in the palliative care needs of the residents and can provide 24 hour nursing and medical cover in time of need. Te Omanga Hospice now has a hospital based palliative care team which includes Doctor David Bird and a palliative care nurse specialist, Debbie Wise. David and Debbie are available for consultation if residents from Amaryllis House are admitted to hospital.
A Link Nurse and network group has been established with the aged care facilities in the Hutt Valley and Margaret Simmons, Manager of Amaryllis House and Anne Edwards Care Manager, are valuable members of the group. The Link Nurse network meets four times a year and informs members of the latest research and best practice in palliative care, provides feedback on any palliative care issues between the services, provides a forum for members to discuss improving performance activities in palliative care and stimulates discussion and reflection on palliative care issues. This has created an integrated service which most importantly impacts on the best care for the resident.
Recently Margaret and Anne presented a session at the Palliative Care Nurses Forum on Huntington's Disease and Amaryllis House. This was well received and gave other health professionals an insight into the specialized needs and care needed when caring for a person with Huntington's.
Margaret has also supported most of the caregivers at Amaryllis House through the Palliative Care Education for Care Assistants course at Te Omanga. This is a national course endorsed by Hospice New Zealand and has been a great forum to acquire and share skills required for the holistic care of all residents.
Amaryllis House has the same philosophy as hospice in that it promotes holistic care and is striving for equitable access to care for all people who have Huntington's Disease. The recent research has endorsed that.
"Palliative care must not be something that only specialised teams, palliative care services or hospices offer when other treatment has been withdrawn. It should be an integral part of care and take place in any setting" WHO (2004).
Ministry of Health, (2001). The New Zealand Palliative Care Strategy. Wellington, Minister of Health
What is palliative care?
Palliative care is the total care of people who are dying from active, progressive diseases or other conditions when curative or disease-modifying treatment has come to an end. Palliative care services are generally provided by a multidisciplinary team that works with the person who is dying and their family/whanau. Palliative care:
Principles of palliative care
- affirms life and regards dying as a normal process
- aims neither to hasten nor to postpone death
- aims to provide relief from distressing symptoms
- integrates physical (tinana), social (whanau), emotional (hinengaro) and spiritual (wairua) aspects of care to help the dying person and their family/whanau attain an acceptable quality of life
- offers help to the family/whanau/carers during the person 's illness and their bereavement
There are five guiding principles that underpin the above definition.
- The focus of palliative care is the person who is dying as well as their family/whanau.
- All dying people should be informed of their entitlement to palliative care and have access to quality health and support services appropriate to, and consistent with, their needs.
- Each person's uniqueness, culture and autonomy should be respected, with all care based on their expressed needs and wishes.
- Palliative care affirms and encourages the quality of life for each individual. While interventions (such as radiotherapy, chemotherapy and surgery) have a place in palliative care, the symptomatic benefit should outweigh any disadvantages of the procedure.
- The achievement of total care for the person requires both a multidisciplinary approach and continuity of care (before, during and after diagnosis of the terminal illness).