MSPs recognise the need to be open about death

MSPs recognise the need to be open about death

Seven MSPs voiced their support for more openness about death, dying and bereavement during a recent debate in the Scottish Parliament.

Nanette Milne MSP, whose parliamentary motion initiated the debate at Holyrood, said "the Scottish taboo around talking about death should be tackled". She also highlighted the importance of early identification, assessment and treatment of pain and the associated physical, psychosocial and spiritual problems, and the essential role palliative care plays in this.

MSPs from across all parties agreed that openness is essential in creating a society where people can discuss their needs and preferences for care towards the end of their life. Michael McMahon, MSP for Uddingston and Bellshill said: “I believe that Scottish society would benefit from being more open to death, the dead and dying, and that we would become more aware of the options and choices that are available when we are faced with the end of life.” Pictured (right) is Michael McMahon MSP taking part in Good Life, Good Death, Good Grief awareness week earlier this year, by writing on a Before I Die wall outside the Scottish Parliament.

Neil Findlay, Lothian MSP, brought a personal note to the debate, reflecting on his experiences of the death of his father: “Scots are not very good at dealing with these types of things. Death is a time that brings out the best and worst in people. Often, we do not like dealing with all the practicalities surrounding death, expressing our emotions and taking time to look at the practical steps that we need to take. We do our best to avoid those things until we have to do them. We do not tell the people who are closest to us simple things such as how much we love them until it is too late.”

This debate was prompted by the publication of research which asked the question How good is primary care at identifying patients who need palliative care? Published in the European Journal of Palliative Care, the paper is the result of a study led by Prof. Scott Murray and Dr Lilin Zheng at the University of Edinburgh in collaboration with representatives from Marie Curie Cancer Care, and NHS Lothian.

The key findings of the study were that:

• Only 20% of patients with chronic heart, lung, liver or kidney conditions (organ failure) or dementia, either requested or were identified for palliative care before dying.
• 75% of cancer patients were identified for palliative care before dying.
• Most patients who were identified for palliative care received it too late to fully benefit – on average only 8 weeks before dying.
• GPs said that identifying patients for palliative care was fairly straightforward for those with cancer, who typically had a clear terminal phase.
• GPs generally found it difficult to discuss death and dying with patients, particularly with patients with a non-cancer diagnosis.
• Few patients openly discussed that they might die, thinking that this was a negative thing to do, although doctors thought it to be helpful for all concerned.
• Negative connotations associated with and a lack of understanding around terms such as ‘palliative’ and ‘hospice’ were also recognised as barriers for starting palliative care and support.

Reflecting on the research, Jim Hume, MSP for South Scotland emphasised the role of GPs: “One of the more enlightening areas of the research was the views of the health professionals. It is clear that GPs across Scotland are having real difficulty in identifying which non-cancer patients are appropriate for palliative care. They are also having difficulty in discussing death and dying with non-cancer patients with life-threatening conditions.”

Malcolm Chilsholm, Edinburgh Northern and Leith MSP drew attention to Good Life, Good Death, Good Grief, saying: “The good life, good death, good grief campaign highlighted in the motion not only supports those going through the death and grieving process but seeks to normalise that process and open up conversations on the surrounding issues. Like the report, the campaign points out that it is never too early to think about planning ahead for illness and death and that making plans when we are healthy means that the pressure of making crucial decisions is lessened at the point when sickness takes hold.”

Paisley MSP George Adam added his support for Good Life, Good Death, Good Grief, saying: “We need to ensure that more people know about that initiative so that, when other families are in that type of position, they do not have to go through the same difficulties.”

The Minister for Public Health, Michael Matheson MSP welcomed the research and reiterated the government’s recognition of the need for good palliative care to be provided in all care settings, on the basis of need rather than diagnosis. Recognising the need for openness about death, dying and bereavement, he said: "... none of the issues will be addressed quickly or easily. Individuals often have a natural aversion to talking about dying and death. Some good work has been undertaken, which members are aware of, through the good life, good death, good grief programme. We need to build further on that to allow those discussions to take place.”

Further information

A transcript of the debate is available in the Scottish Parliament Official Report of 18 September 2013.

Reference: Zheng L, Finucane AM, Oxenham D, McLoughlin P, McCutcheon H, Murray SA. How good is primary care at identifying patients who need palliative care? A mixed-methods study. European Journal of Palliative Care 2013; 20: 216–222.