A discourse around death

On the second day of the British Psychological Society's Annual Conference an eminent panel held a moving and enlightening discussion around death, dying, end of life and palliative care. The speakers discussed patient needs at the end of life, the psychological problems which can arise at this time, making decisions about care before the end of life and the role for psychologists in palliative care. 

Professor Baroness Finlay of Llandaff, consultant in palliative medicine and independent crossbench peer in the House of Lords, gave an impassioned talk about what was important to patients at the end of their lives. She talked through some of the most common fears raised by patients from the Choice in End of Life Care Programme Board review, commissioned to provide the Government with information on improving palliative care.

One of these was a desire to have involvement and control over decisions made about their care. Finlay pointed out that patients often say they want clear, truthful messages from doctors and clinical teams. She said many patients fear medical staff will give up on them too soon. 'People want access to the right services when they need them… a disease does not respect the clock or calendar, and it is unacceptable to wait even an hour for pain relief,' she said.

Finlay also pointed out that patients needed support with their physical, emotional, social and spiritual needs. She said that in communicating with patients it was vitally important for clinicians go beyond listening with their ears, to 'use your eyes to pick up on non-verbal cues, listen with undivided attention and listen with your heart. Patients pick up that you are listening with your heart.' 

Baroness Finlay moved on to criticise the Assisted Dying Bill, saying it was a euphemism for physician assisted suicide or euthanasia. She said that pro-assisted dying groups say that people die anyway once treatment is stopped. She said: 'You stop an intervention because it's not achieving its goal, sometimes you stop treatment and people get better. Most of the time we agonise over it but they die when they were going to die. It's different to giving someone drugs to bring about their death.'

Dr Rachel Stocker (Durham University), who wrote a Parliamentary Office of Science and Technology (POST) note on palliative and end of life care last year, was next to speak. Her research focuses on people living with heart failure, a life-limiting condition, and she spoke about the depression commonly experienced by people at the end of their lives. She said that depression was the strongest predictor of short-term decline of people with life-limiting conditions.

Dr Stocker also outlined the importance of support for carers, describing them as an 'often-neglected group'. She said that there is a particular burden on carers due to the change in the emotional context of their relationship with the patient, and Stocker emphasised the crucial importance of early diagnosis and treatment of depression for carers and patients alike.

Celia Kitzinger, Professor at the University of York and co-director of the Chronic Disorders of Consciousness Research Centre, gave a moving and personal talk about advance decisions – a written record of a person's healthcare preferences which is written and signed before a person loses the capacity to make those decisions. Professor Kitzinger said that particularly in disorders of consciousness, which includes long-term coma after serious brain injuries, people are affected suddenly and many young people are also affected probably before they have had chance to think about the end of life care they would want.

Kitzinger outlined several cases of people who remained in comas for many years, including Tony Bland, who was injured at the Hillsborough disaster and remained in a coma for three years. She said that as long as a person has mental capacity they are able to make their own treatment choices and refuse treatment if they wish. However in the circumstance that mental capacity is lost an advance decision can be used to guide medical professionals. If no advance decision is in place, decisions will be made by a doctor or clinical team, on the basis of a patient's 'perceived best interests'.

Kitzinger also outlined some issues with advance decisions and concerns over their use. Some people worry they will not be available when they are needed and whether they will be respected by doctors or simply ignored. She added that psychologists could play a role in helping people to explore treatment options when making advance decisions in the context of their own values and relationships. She said that her own mother had an advance decision in place and said it was wonderful for her family to know her preferences when the end of her life came about earlier this year.

Dr Elaine McWilliams, a consultant clinical psychologist and Chair of the BPS End-of-Life Care Working Party, said many of the patients she sees are having their first experience of depression, panic attacks, anxiety and fear at the end of their lives. She said if these things are not attended to in a timely fashion it can lead to more expensive care for patients as well as increases distress in both patients and carers.

According to McWilliams, the role of psychologists in palliative care is often overlooked. Psychology is a broad area and she asked whether psychologists in such circumstances are often invisible – patients do not realise they need a psychologist until they have had experience of one. She emphasised the importance of more research in this area: 'I advocate that psychology is in everything to do with palliative and end of life care. Psychologists can lead and inspire good psychological care, this is one of the roles of psychologists in the same way as those who research good medicine, we do not have to be the ones to deliver but good psychological research informs good psychological care.'

McWilliams said a particular area of interest for research is something she calls the 'uncertain reprieve', when a person is receiving end of life care and unexpectedly improves and begins receiving palliative care again. She said this can pose serious psychological challenges both to patients and carers and can include post-traumatic stress-type symptoms. She said: 'This is an informative and rich research area. What patients tell you is it's like coming back from the dead and they can tell you what it is really like to receive end of life care.' Carers and relatives, she said, in these situations have often been feeling pre-bereavement and grief, and after an uncertain reprieve can experience a wide range of psychological symptoms themselves.

Finally Simon Chapman, Director of Policy, Intelligence and Parliamentary Affairs, for The National Council for Palliative Care and the Dying Matters Coalition showed a campaign video from the coalition. He emphasised that people often shy away from speaking about death despite meticulously planning every other large life event many people do not have funeral plans or end of life treatment plans in place. He said death was the 'last great taboo' in our society.

This could be down to fear, Chapman said, a poll found that around 60 to 80 per cent of people have real fears around dying and death whereas only 40 per cent have fears about money and other economic problems. He said that encouraging a discourse around death may help to remove some of this fear as well as ensuring our loved ones have the death they wanted. 

- Ella Rhodes is The Psychologist's journalist. Read more about the assisted dying debate in our archives. You can also read this New York Times piece on how psychologist Sandra Bem made the decision to end her life.

More reports from the Society's Annual Conference will appear on this site over the coming days and weeks, with extras in the July print edition.