Sheila Payne encourages nurses to take an active role in improving end of life care
Nurses are centrally placed to make an important contribution to improving palliative care. It is nurses who are privileged through their everyday work to accompany dying patients and to watch with concerned family members in the silent hours of the night and during the bustle of busy days.
Such nursing draws on fundamental skills of emotional involvement, empathy and compassion, underpinned by the highest technical knowledge of pharmacology and therapeutics. Nursing dying patients is much more than “hand-holding”, although this small act can be profoundly comforting and meaningful. So how can nurses do more to share skills, experience and expertise to improve palliative care?
‘There is an urgent need to recognise that patterns of dying differ and patients’ expectations and preferences may not accord with hospice models of “good” dying’
I want to encourage nurses to engage more with international networks and advocacy initiatives to improve care for all dying patients. This requires courage, assertiveness and confidence - and I am not just referring to those of you who work in cancer services, hospices or specialist palliative care. Models of palliative care developed for those with cancer may not be applicable to all patients and there is an urgent need to recognise that patterns of dying differ and patients’ expectations and preferences may not accord with hospice models of “good” dying.
According to the World Health Organization 56 million people die in the world each year, about 60% of whom could benefit from palliative care. Many living in resource poor settings have little chance of accessing sufficient pain control medication, skilled nursing care or other support during advanced illness and dying for reasons of finance, availability or legislation.
In the UK in 2003, there were 612,000 deaths, a figure that is predicted to rise to 800,000 by 2051. Of course, not everyone needs or wants specialist palliative care, but virtually everyone wishes for high quality and compassionate care to be available to ease the suffering during dying.
As more than 83% of people in the UK die aged over 65, often with more than one long term condition, we need to think critically about how the principles of palliative care can be shared proactively among nurses. The NHS’ End of Life Care Strategy acknowledged that end of life care in some places was not as good as it could be and that a proportion of people died in an unacceptable manner. However, implementing this policy - the first in the world to offer a comprehensive strategy to improve end of life care for all people, wherever they die and whatever they die of - is, of course, challenging.
Nursing teams need to consider these questions
- What interventions for symptom control are available to your patients and how effective are they?
- How are you working with your team/organisation to develop local policy initiatives? How can a nursing “voice” be more proactively presented?
- How are you increasing and promoting knowledge development and the sharing of expertise?
- What are you doing to ensure that quality markers incorporate appropriate outcomes measures that reflect the expertise of nurses and their advocacy for patients?
- How do you and your team use evidence in practice? How can you engage with research to generate new knowledge and evaluate practices that are taken for granted?
Many governments and professional organisations worldwide are also working to improve palliative care. For some, this means tentative beginnings in establishing home care programmes, for others it is about expanding services to include groups of people who were largely neglected (older people dying in care homes, offenders in prison healthcare facilities or people with special needs, such as those with learning disability). Nurses are key players in all these areas, often driving forward change and pioneering new service designs.
The “Budapest Commitments” - developed by the European Association for Palliative Care, the International Association for Hospice and Palliative Care and the Worldwide Palliative Care Alliance - offer a framework to guide national organisations in achieving quality improvements in palliative care. They may be useful for your own nursing teams and cover five areas:
- Access to medications for symptom control, especially pain management;
- Recognising that policy development and advocacy work may be essential;
- Educating healthcare workers so they are knowledgeable and skilled, and can access training opportunities to stay up to date;
- Establishing norms and standards as quality markers to guide improvements;
- Highlighting the essential role of research in providing an evidence base for practice.
For more information on the Budapest Commitments see www.eapcnet.org
Sheila Payne is director of the International Observatory on End of Life Care, Lancaster University and chair in hospice studies, Help the Hospices