"When does palliative care begin?" Notes from a seminar

When one considers that in New Zealand only 6% of all deaths occur in hospices, while a further 34% occur in hospitals and some 31% occur in residential care, the need to examine when palliative care begins is as important as where it begins and where it does not.

The seminar theme was analysed through a number of questions: How does the health professional know when to change direction in the care of people who live with constant health changes? How might the science of medicine be married to the art of healing so that people living with chronic health conditions can have their needs met in a comprehensive manner? How can we enhance the knowledge, understanding and acceptance of palliative care by health professionals so that all dying people have timely access to palliative care? We were reminded that good and bad experiences of end of life care do not occur in isolation but at the very intersection between the personal, cultural, medical, institutional and social.

The art and science of palliative care, which is synonymous with hospice care, has achieved enormous growth and recognition since its introduction into New Zealand in the late 1970s. The hospice movement grew out of the impoverished care of dying patients and families and its success was built 'one family at a time' based on people's positive experience of a holistic approach to care focused on the spiritual, physical, medical and emotional needs of the patient and his or her family. Over time this approach to care has been introduced to many hospitals and aged care facilities.

One of the ideas to emerge from the recent seminar was the notion "We can do better!" Several of the speakers, including Keynote Speaker Emeritus Professor Ian Maddocks from Flinders University in Adelaide, highlighted the gaps between the theory and practice of palliative care delivery in both Australia and New Zealand.

Commenting on these gaps, Professor Maddocks noted that while many of the defining characteristics of palliative care should be considered part of mainstream medicine, it remains a sad fact that too often they "are not widely apparent in many areas of health care." Furthermore, "referrals for the palliative care services [that do] offer them seem often reluctant and late." Barriers to early referral include inadequate communication, inadequate symptom control, and lack of resources.

Considered collectively, these barriers have led to significant gaps in access to palliative care that continue to impact adversely on individual families and patients. Thus, for example, there are still patients who die with unnecessary pain and with distressing and poorly controlled symptoms. Moreover, overtreatment and fragmented care are still realities in New Zealand. At the same time many families are unable to access effective palliative care, not just in rural areas but also in towns and cities including some major hospitals.

In addition, as we become more fragmented as a society, our sources of meaning also become more fragmented. This contributes to the tendency amongst many New Zealanders to shy away from topics such as suffering and death. In these circumstances one can readily understand why so many conversations about ethical values and end of life care are so one dimensional. It is also understandable why certain people are keen to advocate for the premature death of the suffering patient; the wish to take control of death through euthanasia paradoxically appears as part of the denial of death that characterises many western societies.

To reiterate, the point is not that the philosophy of palliative and hospice care is deficient. The point is that we are currently falling short of the ideal in the implementation of the philosophy with the result that patients and families suffer needlessly. When a family or patient has a negative experience this can profoundly affect their views about end of life care. This potentially provides, I believe, a further impetus in the push for euthanasia.

The seminars are a wonderful sign of hope because they are helping to reduce the gap between the theory and delivery of palliative care. I have been privileged to witness this difference both for patients and their families. How we 'mind the gap' in end of life care is critical to our nation's wellbeing.

Unfortunately I still hear too many 'horror stories' relating to end of life care in New Zealand. It would be tragically ironic if, in our time, the push for euthanasia and/or physician assisted suicide was to gather force, one horror story at a time, in the same way that the excellence of palliative care in New Zealand has been built one patient and family at a time.

Rev Michael McCabe PhD was the Facilitator for the Changing Minds Seminar.