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Palliative Care – time to reflect |
The following is a brief overview of some of the presentations at the recent 7th Australian Palliative Care Conference in Adelaide in September. The theme of the conference was “Time to Reflect”, which in turn produced a good discussion of psychosocial issues in palliative care.
Families
There was an interesting presentation on the importance of families in caring for a palliative patient presented by Prof Linda Kristjansen. In fact given that one of the primary principles of palliative care is that the patient and family are seen as the unit of care, how true are we to this principle? Her research outlined various issues for the family:
1.Primary concerns of family members
- Comfort and pain management.
- Information about treatment and prognosis.
- Information about providing care and support.
- Assurance that the patient is receiving best possible care.
- Assurance the patient’s perceptions of his illness are being heard.
2. Sharing care with family
Sharing care with the family is enormously important to most families and should be continued in hospital (where it is least likely to be shared).
3. Family as patient proxies
Families are usually very precise on reporting symptom management for the patient. (In previous studies concerning the attitudes of professional health care workers regarding patient symptoms, professional carers consistently underrate patient distress).
4. Impact on family members’ health
Not surprisingly, family members experience physical and mental illness during the care of a palliative care patient and also have exacerbations of chronic illness.
On a happier note, in a paper (not presented) by Christakis, bereaved relatives of a patient cared for by a palliative care team have a lower death rate than those not cared for by a palliative care team!
Perspectives on the wish to hasten death
Prof Brian Kelly gave an interesting presentation about patients’ wishes to hasten death. Of note, requests for euthanasia are primarily not about pain, but more likely about depression, anxiety, hopelessness, being a burden, loss of independence and lack of social support.
He also ventured that requests for euthanasia were a joint issue for clinicians and their patients: That despairing patients may engender feelings of despair in the doctor and vice versa and that patient requests for euthanasia can be viewed as a ‘symptom’ of difficulties by both patient and doctor during the terminal phase of illness.
In a separate paper, Dr Simon Wein talked about demoralisation syndrome, which involves feelings of meaninglessness, hopelessness, helplessness, existential distress, pessimism, subjective incompetence and some degree of isolation. He argued that demoralisation is clinically distinct from depression and is more strongly associated with the development of a desire to commit suicide. Demoralisation is more likely to develop with poor symptom control and existential distress.
The benefits of palliative care
There has been much discussion in the journals about how do we evaluate palliative care services and develop outcome measures, i.e. how do we know we are providing a beneficial service to the community? There was short paper presented by Dr Amy Abernethy, which evaluated the perceptions of bereaved relatives whose loved ones had been cared for by a palliative care service. The study showed that access to palliative care services benefited the bereaved loved ones by helping them to know what to expect during the dying process and move on with their lives.
Are GPs comfortable talking about death and dying?
In research about support and education for GPs working with palliative care patients some issues were discussed:
- Many GPs believe most patients do not wish to discuss death and dying despite the evidence to the contrary in the literature.
- When initiating discussions, GPs tend to ask closed questions rather than open ended ones, thus potentially inhibiting patient exploration of underlying issues.
- The discussion around death and dying was usually initiated following diagnosis of a terminal illness.
- An advance health care directive (living will) was identified as providing a useful framework for such a discussion.
- Urban and rural medical practitioners revealed no differences in perceptions of important issues.
The bain of pain is plainly in the brain!
The above quote was from Dr Allan Basbaum whose talk on pain mechanisms was a highlight of the conference. His quote is reference to the fact that without affect, there is no pain i.e. when assessing pain, one cannot under any circumstance ignore the emotional / psychosocial / spiritual component of that pain and moreover you cannot predict and never assume that you know the magnitude and quality of a person’s pain.
He also advised us on how to feed the birds in winter without letting the squirrels (read possums!) eat all the nuts with just a pair of tights and a bag of chillies – but that’s another story!!
Jonanne Doran is the medical director of palliative care for the Northern Rivers Area Health Service.
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