Death and dying is something that will affect every person in the world, irrespective of culture, faith, socioeconomic status or politics. Most of us have already had experience of losing someone close, and many of us are supporting a friend, neighbour or relative whose health is in irreversible decline. Some readers may be facing this reality themselves.
Palliative care is a frequently misunderstood term. Put simply, it is aimed at supporting someone faced with dying due to irreversible deteriorating health.
This can take many forms, such as controlling pain, providing practical help in their own home, addressing psychological distress, fear or anxiety, or helping people wrestle with spiritual issues, such as the purpose of life. Palliative care is about helping people to live well in the days, weeks, months before they die.
There is overwhelming evidence for the positive impact of good palliative care. Yet many are reluctant to consider or discuss issues relating to mortality until it is too late. Many health and social care professionals are guilty of this and some prefer to talk about the next treatment or intervention, rather than open up a conversation about what can be done to support a good death. This is why Healthcare Improvement Scotland is working with the Scottish Government to deliver the Strategic Framework for Action for Palliative and End of Life Care.
Projects are underway to explore how professionals might identify people who would benefit at an earlier stage. Five areas across Scotland are testing innovative ways to help predict this. This work is happening in selected GP practices, care homes, community hospitals and social care settings.
This is just the first step. The conversations that follow between health and social care professionals and the person are important. Care planning results from these discussions and this is another area that Healthcare Improvement Scotland is currently focusing on.
Conversations with people about what matters to them as they approach the end of life require skill and practice. There are excellent educational courses in Scotland which can help health or social care professionals to improve communication skills. However, uptake is patchy and not always prioritised within personal learning and development plans.
What matters most to someone facing deteriorating health will vary between individuals, but only through discussion and the understanding of priorities can care be provided in a truly person-centred way.
Anticipatory Care Planning describes the ‘thinking ahead’ approach being promoted by Healthcare Improvement Scotland. People are encouraged to consider what care they would like if and when their health deteriorates. It is a chance to make choices and identify who they would like to involve in any future decisions.
This can be supported by legal arrangements, such as a power of attorney. While it is not always possible to predict what will happen, discussions with friends, family and professional care will make it less likely that futile, painful or undignified procedures will be attempted at the end of someone’s life. These priorities for care can be shared (with appropriate consent) amongst health professionals through an electronic Key Information Summary (KIS).
If there is an urgent need to access healthcare in the evening or at a weekend, the KIS can be viewed by a wide range of health professionals (including NHS 24, Scottish Ambulance Service, out of hours GPs, hospital emergency departments) to enable care to be tailored to previously identified priorities. In this way it is possible to help people to live well in the days, months and years before they die.
However, good palliative care is not the sole remit of health and social care professionals. Wider society has an important role in influencing how we view and react to mortality issues.
Organisations such as the Scottish Partnership for Palliative Care and Good Life, Good Death, Good Grief are promoting activities in schools, workplaces and communities which foster more supportive attitudes and behaviours relating to death, dying and bereavement.
We can all play a part by considering what we can do to support friends, family, neighbours and work colleagues to be more open to this important topic.
Dr Paul Baughan, general practitioner and national clinical lead for palliative and end of life care, Healthcare Improvement Scotland.