Creating an openness around death and dying
Comedian and film-maker Woody Allen once said: I dont want to achieve immortality through my work; I want to achieve immortality through not dying.
Mortality is a recurring theme in Allens films and his characters sometimes talk extensively about their fears of death and dying. However, in real life most of us are reluctant to discuss death.
Macmillan Cancer Support (MCS) identified this as an issue after studying peoples attitudes to death and dying through surveys and interviews. One general public survey had 1,786 respondents, while another was people with a previous cancer diagnosis and had 1,878 respondents. The interviews were with health professionals and people living with terminal cancer.
Approximately 35% of people with cancer who said they had thoughts and feelings about their death had not shared...
Comedian and film-maker Woody Allen once said: ‘I don’t want to achieve immortality through my work; I want to achieve immortality through not dying.’
Mortality is a recurring theme in Allen’s films and his characters sometimes talk extensively about their fears of death and dying. However, in real life most of us are reluctant to discuss death.
Macmillan Cancer Support (MCS) identified this as an issue after studying people’s attitudes to death and dying through surveys and interviews. One general public survey had 1,786 respondents, while another was people with a previous cancer diagnosis and had 1,878 respondents. The interviews were with health professionals and people living with terminal cancer.
Approximately 35% of people with cancer who said they had thoughts and feelings about their death had not shared these feelings. Only 8% had spoken to their healthcare team. When asked why they had not shared their anxieties, one fifth said they did not feel comfortable talking about it, and around the same proportion said they had not wanted to bother anyone. Of the people with cancer, only one in five had thought about where they would like to die, and just one in nine had planned their future care.
of people would like to die in hospital, but 38% of people with cancer die there
Source: Macmillan Cancer Support
The charity’s analysis of these statistics in a report, No Regrets, argues that if people were more willing to talk about death and dying, and plan for it in advance then they would be much more likely to receive the right care and support in their place of choice – and have a ‘good death’. Currently, many people prefer to die at home, but most die in hospital.
Nurse and head of health and social care at MCS Adrienne Bentley says: ‘Before my own mother died of oesophageal cancer a few years ago, we talked about her inevitable death.
‘It was hard, but I can’t express enough how vital it was to know what she wanted. Far from giving up on life, expressing her choice about where she wanted to die, and her priorities, was her way of taking control. For me and my dad, it meant that when she finally died we had the peace of knowing it was what she would have wanted. This would never have happened without us talking about it.’
Macmillan’s priorities for the four UK countries
The next government should fully implement the 2015 report Choice in End of Life Care to ensure all patients are able to express their care choices, and staff are trained in end of life care and the importance of advance care planning.
The 2015 Strategic Framework for Action on Palliative Care should be implemented. It outlines how palliative care should be tailored to individual needs.
People with terminal cancer should have their treatment and care planned holistically. More effort is needed to ensure that people are cared for and die in the place of their choice, and avoidable emergency admissions to hospital during this stage of illness are prevented.
Macmillan is calling for a ‘comprehensive cancer strategy’ to deliver improvements in the quality and availability of personalised end of life care, alongside the development and implementation of the Living Matters, Dying Matters Strategy 2010-2015.
The No Regrets report assess what health professionals can do to encourage patients to talk about death and plan for it – and how cultural change can emerge so death is talked about more.
Marie Curie director of nursing Dee Sissons says nurses working in all areas of healthcare can contribute by looking for ‘prompts’. She explains: ‘Sometimes a patient might say they are not sleeping well, prompting a nurse to ask if there was anything that was troubling them that could be causing sleeplessness. They may start saying what’s on their mind. Next time you see them you can ask whether they were still having trouble sleeping.’
Ms Sissons argues that nurses need a combination of ‘competence and confidence’ to help patients talk about death and dying.
of people with cancer would like to die at home, but only 30% do
Source: Macmillan Cancer Support
RCN professional lead for long-term conditions and end of life care Amanda Cheesley agrees: ‘Nurses need to use their intuition about when to start conversations about death. If a patient says, for example, "My daughter’s getting married – will I be well enough to be there?," then nurses can take this forward and ask about why she has these concerns. Patients often don’t talk to family members about dying because they think it will upset them. But they do talk to nurses and other staff, so that’s where the opportunity arises.’
Ms Cheesley believes that all NHS employees should be trained to encourage patients to talk about, and plan for, death and dying. ‘Some trusts have good training schemes involving everyone from the porters to the consultant, but others don’t do anything. Nurses can be frightened of upsetting people but we need to stop pussyfooting around these issues. If a patient is young, a discussion might include considering who would pay the mortgage after the person dies or who will look after their children.’
In February last year, a UK-wide programme for improving palliative care was launched, starting with ten trusts in England trialling new procedures and sharing best practice.
Nurse consultant for cancer and palliative care and UK Oncology Nursing Society (UKONS) board member Sandra Campbell says: ‘Talks about dying and death should also involve patients’ relatives. For example, there may be relatives that would not like to see a family member die in the family home in bed because whenever they passed the bed they would feel like they were seeing the dead person in it. These are the sorts of issues that should be discussed in the open at an early stage.’
She argues that steps are being taken to bring about cultural change in the UK. She points to Scotland’s Strategic Framework for Action on Palliative and End of Life Care, published in December 2015.
One aim is to ‘spread a culture of openness about death, dying and bereavement.’ This has involved partnerships with organisations such as schools, prisons and solicitors’ firms. In Falkirk, St Francis Xavier Primary School trialled a programme teaching children age 9-11 about issues relating to death, dying and bereavement. It worked so well that the school has introduced it permanently onto the curriculum.
A programme for spreading best practice
A small group of healthcare providers across the UK are receiving expert advice and money for developing improved palliative care services. Macmillan Cancer Support is funding the Building on the Best programme, supported by the National Council for Palliative Care and government agencies.
Following evaluation, the successful elements will be shared across the UK as beacons of good practice for the rest of the NHS.
England was the first country on board, where ten trusts signed up – backed by NHS England and the NHS Trust Development Authority.
One aim is for the healthcare providers to use outpatient appointments as opportunities to discuss advance and anticipatory care planning. Other aims are to improve the handover of information and records as people move between acute and secondary care, and to bring better pain and symptom management. In Scotland, a major focus will be on enabling good communication between patients, families and staff to ensure shared decision making.
The University of Dundee has introduced training for nurses in how to approach death and dying with sensitivity during discussions with patients and families. Elsewhere, 39 Scottish Law firms set up a group called Solicitors for Older People in Scotland, which gives free talks for older people on understanding legal issues around the use of wills, advance directives and powers of attorney.
of people who said they had thoughts and feelings about their death had not shared these with anyone
Source: Macmillan Cancer Support
Public Health England and the Dying Matters coalition – set up by the National Council for Palliative Care to promote public awareness of death dying and bereavement – are champions of ‘compassionate communities’. Organisations such as GP consortia, health and wellbeing boards, spiritual groups and hospitals team up to provide activities and events to promote conversations about end of life. These include a remembrance day about loss, a GP evening on end of life care, and an open day with funeral directors, crematoria and hospices.
While there may be some way to go, with initiatives like these at least some of us can start to talk as much about death as Woody Allen had done.
Christian Duffin is a freelance health journalist
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