There needs to be a radical change in the way professionals approach the subject of death if more people are to have a say on how they will spend their final days, writes Louise Hunt
he End of Life Care strategy calls for a cultural shift in the way social care and health services support people who are dying and their families. So this week’s World Hospice and Palliative Care day (11 October) is a timely reminder of how much work needs to be done to achieve its goals within 10 years.
“The scale of the challenge is enormous,” says Jonathan Ellis, director of public policy and parliamentary affairs at charity Help the Hospices. “The strategy throws light on one area of health and social care that has been a low priority for years. People have more complexities at end of life and we know that two-thirds of people die in NHS hospitals.”
At the core of the Department of Health strategy is giving people more choice over where they spend their final days. The government has committed £286m to primary care trust baseline budgets over two years to reduce the number of hospital admissions so that more people can die at home, in hospices or care homes, with the requisite end-of-life care in place, if they wish.
For this to happen there needs to be a big change in the way the public and professionals approach the taboo subject of death. Dying should no longer be seen as a medical event, says the strategy, but should be part of open discussions between health, social care staff and people approaching the end of their life so that care packages can be implemented with the input of services from social care, specialist palliative care and the NHS.
Essentially, this means that social care, the NHS and voluntary agencies have to work together more closely and that everyone involved in these sectors will need to develop a better understanding of end-of-life care.
Ellis sees social workers and social care staff as “absolutely crucial” in supporting people at the end of life, but they – and other professionals – will need access to specialist information and resources. “The most important thing is how we develop partnerships,” he says. “Having all the agencies working together is the only way we can deliver this strategy.”
These links are already being forged around the country, says Ellis, with many hospices sharing expertise with care homes and local authorities, but more progress needs to be made, particularly on breaking down commissioning barriers.
Les Clarke, director of older people’s services at care home provider Housing 21, says too many people end up in hospital because health implications are seen as the responsibility of health providers.
He says: “The social care workforce needs to become less risk-averse and get a better understanding of what can be provided outside hospitals and use more imagination when putting together individual care plans. There is a tendency to use only well-known modalities.
“By developing extended roles social care could provide an awful lot that is now provided by nursing staff. There needs to be a more highly skilled workforce that can make more autonomous decisions. Now, everything reverts back to health, when it should be about dignity and choice.”
The strategy recognises the importance of developing competences for those who have contact with people at the end of their lives, but who are not specialists. Part of the funding is expected to pay for a major workforce development initiative, training staff in, for example, communication skills, and bring on board higher education institutions and the regulators.
Penny Hansford, director of nursing at St Christopher’s Hospice, the charity that helped launched the hospice movement, says: “Everybody is clear that the generalists will need to be skilled up to deliver end-of-life care. A big thrust now is to deliver a workforce that is fit for purpose to give everybody good quality end-of-life care irrespective of diagnosis.
“Most people who are dying won’t need specialist palliative care. But it should be the responsibility of specialist palliative care providers to train the generalist workforce.”
Pam McClinton, head of palliative care and clinical policy at Sue Ryder Care, agrees: “The strategy will raise a lot of support needs that social workers will pick up. Greater awareness of death and dying raises support needs and social care will have to look at the workforce competence to deal with this.”
The charity employs social workers in its hospices. McClinton says their partnerships with local authorities are “absolutely vital and we will need more of that” if these links are to be established universally.
This is where the 300 or so palliative care social workers could have a larger role in supporting their local authority counterparts. Mainly working in multi-disciplinary teams in hospices and also in acute and community services, they provide a broad role in palliative care, including pre-bereavement and bereavement support.
It is a function endorsed by Judith Hodgson, recent vice-chair of the Association of Palliative Care Social Workers, who works for the Dove House Hospice and teaches bereavement skills to trainee social workers at the University of Hull. She says: “There is a great role for palliative care social workers to support the training of communication and other key skills around end-of-life and palliative care, which I believe should be mandatory for many health and social care workers.”
She is disappointed that their role was not more explicitly highlighted in the report: “I don’t think the strategy has given enough thought to the role of the social worker in hospice and palliative care. And we need to make sure this role is better understood. I would suggest that an awful lot of people are not getting specialist palliative care social work support.”
Although the strategy states that only 4% of people die in hospices, she says this figure masks the true extent of their work. “If the work done by hospice employees in the community, often long before death, was included you would get a much higher percentage,” says Hodgson.
Palliative care social work is wider-ranging than people realise and crosses into traditional social services work, such as child protection or custody issues. It is also a role that is becoming more complex as families fragment. Hodgson says that when someone dies it can bring forth a lot of personal issues, such as abuse. “Bereavement is not as straightforward as this strategy might suggest.”
Full report from www.eolc-observatory.net/pdf/ACP_240408.pdf
Care home staff shy away from difficult questions
A study published in April by the University of Lancaster End of Life Care Observatory found that a lack of confidence in care home staff was a major barrier to them documenting residents’ end-of-life care wishes.
In association with older people’s charity Counsel and Care, researchers surveyed more than 500 care home managers just before the Mental Capacity Act 2005 came into force.
They aimed to ascertain the prevalence of advanced care planning – a process of ongoing discussion between patients whose condition is expected to deteriorate – which was highlighted as good practice in the End of Life Care strategy. They found that low numbers of residents had formally completed an ACP report, although most care homes had had informal discussions with residents.
Report author Katherine Froggatt, a senior lecturer at Lancaster University, says: “There could be a place for social workers with experience in end-of-life care in training care home staff to develop their communication skills and understanding of how to raise these issues with residents.”
Another contributing factor to the ability of care homes to implement advanced care plans is their relationship with primary care trusts, GPs and hospitals, according to researchers.
Froggatt says: “Their ability to achieve residents’ wishes depends on their relationships with external agencies. A key message from the study is that care homes are part of a wider system that needs to work with them.”
This article is published in the 9 October issue of Community Care magazine under the heading A new beginning for the end