In Session 1, Matthew Hotopf (King's College London) talked about his experience of treating people with depression in palliative care. Anti-depressants are effective with respect to placebos. People with strong suicidal ideas are in a difficult situation as they cannot be easily moved to psychiatric wards due to the special care they need. The important factor is to be able to contain risk of death by suicide and self-harm. Hotopf concluded by saying that it is normal to have extreme emotions near the end of life, and this does not mean that one suffers from a mental disorder.
Annabel Price, Consultant Psychiatrist at the Cambridge and Peterborough Foundation Mental Trust, pictured above, focused on issues surrounding the desire for death: How can it be measured? Does it change over time? Is treatment for depression affecting the desire for death? How should clinicians respond to the desire for death? Suicide is very widespread, and more common among the elderly, men, people with psychiatric disorders, and the unemployed. People with terminal illness are among the most vulnerable groups.
Evidence suggests that, although suicidal thoughts are very common in cancer patients, people desire death strongly after diagnosis, but then their desire often fades. A very small number of people with suicidal thoughts complete suicide (mostly they are elderly, male, socially isolated, and affected by substance abuse). There seems to be a strong link between desire for death and depression. A very interesting result is that most people who express a desire for death would not seek to end their lives via assisted suicide. Another interesting result of qualitative research is that expressing a desire for death sometimes can be a call for help, wanting carers to take one seriously and pay attention, and also a desire to regain control over one's own life, preserving self-determination.
In session 2, Victor Pace (Consultant in Palliative Care, St Christopher's Hospice) talked about severe mental illness (especially psychosis) in people with terminal illness. The effects of psychosis are unemployment (which often means limited socialisation and poverty) and lack of close relationships. Being socially integrated matters a lot to people with severe mental illness and predicts reduced risk of suicide. But most of them (two thirds) lack social integration and this causes serious disadvantage.
Having psychosis is the greatest predictor of premature death (not because of suicide, but physical health, such as high incidence of smoking, diabetes and metabolic syndromes, often made worse by antipsychotic drugs). Due to all these factors, people with schizophrenia die twenty years younger than if they did not have schizophrenia.
Once people with schizophrenia get serious physical illness (such as cancer) they are much more likely to die from it, due to delayed treatment and co-morbidity. In palliative care, one important issue is pain. We used to think that people with schizophrenia have reduced pain sensitivity, but it is not clear whether they just have reduced pain expression. They also seem to have a higher pain threshold. This might blind us to their needs in palliative care.
Pace argued that we need more research on severe mental illness and palliative care, easier access to a full package of services rather than compartmentalised attention by different consultants, ethics advice, and more encouragement to see families as experts in some situations. More than anything, we need to treat people near the end of life with respect.
Next speaker was Julian Hughes (Philosopher of aging at Newcastle University, and Consultant in Old Age Psychiatry at the Northumbria Healthcare NHS Foundation Trust) who focused on dementia and personhood. In his talk he reviewed some theoretical conceptions of agency and personhood, from Locke to Wittgenstein, and their significance for seeing people with dementia as persons deserving care and whose suffering we need to empathise. We should not assume that people with dementia are not persons: it is what we do, how we navigate the social environment and build a relationship with them, that helps people with dementia preserve their personhood.
In session 3, Harvey Chochinov (Psychiatrist at the University of Manitoba), pictured above, addressed the notion of dignity in palliative care. His main point was that the way in which service providers care for the health of service users matters to whether the latter feel satisfied and the former feel burnt out and detached. People whose dignity is undermined are much more like to express a wish for death and experience depression. The mere fact that people cannot bathe, dress, or go to the toilet by themselves has a very serious impact on their sense of self as dependent and dejected. People do not want to be reduced to a symptom checklist, they want to be seen as persons and not (only) as patients.
Healthcare providers need to be skilful witnesses. Healthcare encounters are where the skilful witnessing needs to take place. That requires treating people as individuals: they should not be called "dear" or "sweetie" but by their names. "Elderspeak" causes the person to turn away, and negativity ensues. Near the end of life feeling different from what one was, and feeling like a burden are what mostly causes one to feel that one has lost dignity, and healthcare professionals can help service users manage those feelings and find meaning in their experience.
Unfortunately I missed session 4 of the conference, but based on what I saw the event was most informative and the discussion after each session very lively. Overall, this conference was an excellent opportunity to reflect upon the challenges that mental health issues pose for palliative care.