A dignified death
When we think about a ‘dignified death’, many of the factors we looked at in relation to a ‘decent’ life are relevant again. A personalised, individual and compassionate approach is basic.
Since this guide was written, many people have died in hospital and in care homes from COVID-19. Many people have not had choice about where they die or who is with them during their final hours. Health and care professionals have made great efforts to comfort the dying. They have found ways to enable people to hear the voices of loved ones as they die. In one care home in Buckinghamshire, the wife of a dying man passed some of her perfume through to a care worker to place under her husband’s chin to evoke a final memory. Those providing end of life care for COVID-19 patients must remain protected by masks, gowns and gloves, which is inherently dehumanising. This is not what most of us would consider a dignified death.
The Government has emphasised that visits at the end of life are important both for the individual and their loved ones and should continue wherever they can be safely facilitated. Decisions about this will now need to be made on a local level.
The effects of COVID-19 will be with us for many years to come, but we do hope that we will return to the good practice that has been developed in hospices, care homes and hospitals and is set out in this section
In this SCIE video, a specialist nurse describes the kind of holistic assessment that is used to support a person at the end of life. It involves a continuous review of the physical, social, psychological and spiritual needs of the person who is receiving care.
Adult social care is concerned with providing support for people at every stage in their lives, young and old. But there is a very large group of people – older people living in residential care, as well as younger adults living with life-limiting conditions – who may die relatively soon after entering the home.
The approach, skills and knowledge that will enable staff to support people in their final months and days are key to a dignified death.
Dying at ‘home’
Research by Dying Matters found that about 70 per cent of people would prefer to die in their own home. According to Government figures for England, almost half of deaths occur in hospitals and around 20 per cent are in care homes (residential or nursing). Of course, the statistics we see in the future will be radically changed by the impact of the COVID-19 crisis.
Residential and home care staff, particularly those working with older people, need to be prepared to support people who are dying. Training around death and bereavement is important but so is how to provide compassionate and dignified end of life care. The wellbeing of staff working in end of life care also needs to be supported.
Information and communication
This SCIE video looks at how personalised care can be achieved through the ‘Living Well’ tool, which involves creating a simple one-page profile to record a person’s needs and wishes. It is shared by everyone involved in their care so that they can quickly get to know and understand the person, even if they have communication difficulties.
Practice example: AlecOpen
Alec is an 87-year-old widower living at Cedar Lodge, a residential care home. He has lived in the home for the past two years, and during that time has had the same key worker, Amana.
Alec’s three children are all regular visitors to the home. He has recently been diagnosed with renal failure, and his life expectancy is only a few months without dialysis. In the past Alec has made it clear that when his ‘time comes’ he wants to be able to stay at Cedar Lodge, and ‘go quietly’.
A planning meeting, involving Alec, his family, and health and social care workers has taken place. He has made it clear that he does not want any medical intervention to prolong his life, and this has been recorded in an advance decision to refuse treatment.
As well as input from his GP, Alec will be receiving regular support from specialist nurses to manage his symptoms and keep him comfortable. Day-to-day care and support will continue to be provided by Cedar Lodge care workers. Alec’s children will spend time with their father each day.
Communication is not just about getting the conversation right. In an increasingly diverse society, citizens may be excluded simply by language:
The language barriers experienced by some people from BME communities further complicate difficult conversations’ (A Different Ending: Addressing inequalities in end of life care BAME, CQC 2016, p 1).
People told us about family members being used as interpreters. Although in some situations this is what people would choose, others may not feel able to communicate their true feelings and wishes through a family member. Without a professional interpreter available it is difficult to be confident that the dying person has been able to make genuine choices about their care.CQC, ‘A Different Ending: Addressing inequalities in end of life care BAME' (May 2016)
Culture and religion
Beliefs and traditions surrounding dying and death are important for people from all faiths and none. As a chaplain explains, this may be the time when a person returns to their religion.
It’s wrong to work from stereotypes. Don’t just assume that that all people from a particular background, ethnicity or community will hold spiritual or religious beliefs. And give equal consideration to the views and wishes of people who do not identify with a religion.
The point is to know, and to get it right. Enormous distress can be caused to a person and their family if the proper rituals, arrangements, and procedures are not followed.
What the CQC say about dignity in death
In our local area fieldwork, we found some services with a good understanding of what is important to people and respect for their individual cultural beliefs and traditions, particularly in the last days and hours of life and after death.
Examples included health and care services:
- ensuring the timely release of the deceased person’s body and death certificate so that families could make funeral arrangements quickly
- enabling families to wash the bodies of their loved one, as well as
- providing a safe viewing area so people from the Hindu community could observe cremations.
See People from black and minority ethnic communities (CQC, 2016)
A review of end of life services coordinated by the CQC in 2016 found that some groups could be at a disadvantage in receiving services. LGBTQ+ people, for example, may feel excluded by care staff and inhibited from showing affection.
People often had both positive and negative experiences of health and social care services previously, which shaped their perspective on the care they were likely to receive at the end of life. As a result, some people were concerned that they might not be treated with dignity and respect by health and care services, or that their partners may not be involved in the way they wishLesbian, gay, bisexual or transgender people - A different ending: addressing inequalities in end of life care (CQC, 2016)
The review also looked at the relatively disadvantaged situation of people with dementia, or people dying from other diseases than cancer, or people who are just very old. In all these cases, it was sometimes assumed that it was going to be difficult to identify when the end of life was imminent. And this assumption was preventing essential care planning.
The SCIE video shows the steps involved in supporting a person with dementia to die well.
Practice example: Jewish end of care lifeOpen
[The Salford Royal NHS foundation Trust] … prioritised engagement with seldom-heard community groups, and were improving their provision of end of life care to different groups within the local community. As a result, there were good links with the local Jewish community, and regular meetings with the Rabbi to ensure that the service could respond positively to traditional Jewish end of life care cultural practices and timings.
Care after death
The assurance that everything will be done as it should be, after death, is an essential part of ‘dying well’. This involves:
- preserving the dignity and privacy of the body
- making sure that advance wishes and plans made by the person about their death are respected, and not forgotten in the business of ‘moving on’
- observing all the relevant cultural and religious practices expected by the person and their family and friends
- giving family, both old and new friends and staff opportunities to grieve for and remember the person who has died.
The hospice movement in the UK, which has led the way in developing efficient and compassionate end of life care, has produced detailed guidance for staff responsible for care after death.
Download: Care After Death Hospice UK 2015 (2nd edition), and subsequent publications.
The founder of the hospice movement, Dame Cicely Saunders, summed up the positive approach to person-centred care, which we have been discussing above, much more succinctly:
You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.Dame Cicely Saunders (1918–2005)
In this section we have provided some tools and practice examples to help provide a dignified death.
- Statistical commentary: End of life care profiles (Public Health England, 2018
- Care homes for older people market analysis and projections (LaingBuisson, 2015)
- A different ending: addressing inequalities in end of life care (CQC, 2016)
- A chaplain’s tale (Patient Voices, 2015)
- Compassion in Dying