The past 18 months have been a tragic and brutal reminder of the impacts of serious illness, dying and bereavement. Whilst individual experiences have varied greatly, COVID-19 has highlighted an eternal truth: we are a community rooted in the shared experience of mortality. We are all vulnerable ultimately to the fears, uncertainties, suffering and losses that come with serious illness, dying and bereavement.
These past months have also demonstrated the best of humanity – in the care and support provided by communities, and by health and care services, to those reaching the end of life or who have been bereaved. These compassionate responses demonstrate a deeply rooted conviction that at this most vulnerable stage of life people have a fundamental human right to the care and support they need.
Leaving aside pandemics, over the coming two decades Scotland will see a large growth in the number of people dying each year – this is largely because of an aging population. Currently 1 in 3 hospital beds is being used by someone in their last year of life. The majority of people in care homes for older people are in their last year of life. Over 30,000 frail elderly people receive social care support at home each week. In 2040 more people will die, at an older age, very often after living with multiple different health conditions.
Living with serious illness, dying and bereavement are inevitable and unavoidable parts of the human life course. Whilst dying itself is ultimately inevitable for everyone there is much which can be done to improve people’s experiences during these difficult times. Palliative care aims to support people and their families dealing with these situations, optimising wellbeing during the time which people may have left, be that years, months, days or hours.
Now is a good time to take stock of how in Scotland people are supported when living with serious illness, dying and bereavement, and ask who can we do better? This is the question we have been working on at the Scottish Partnership for Palliative Care. Our conclusions are published in a new report Every Story’s Ending. The report is long, detailed and highlights eight priority areas for action:
- Establishing leadership, commitment, collaboration and accountability
- Improving the planning and organisation of services
- Measuring and understanding peoples experiences of living with serious illness, dying and bereavement, and the impact of services
- Working collaboratively with individuals and communities (who provide the bulk of the care and support which people receive)
- Encouraging the public to think and plan ahead for this inevitable phase of life
- Improving care and support overnight and at weekends
- Improving bereavement support
- Ensuring there are sufficient adequately skilled staff to provide services
The first of these, whilst it sounds very dry, is perhaps the most important. Currently 1 in 3 hospital beds is being used by someone in their last year of life. The majority of people in care homes for older people are in their last year of life. Over 30,000 frail elderly people receive social care support at home each week. Yet despite being a huge part of what the health and social care system delivers each day, palliative and end of life care is often surprisingly invisible in polices, plans, strategies and particularly in the measurement and understanding of outcomes.
The organisation and delivery of palliative care services in Scotland is complex. Multiple different organisations (lots of parts of the NHS, local authorities, care homes, care at home services, hospices, other charities) are involved. The lines of accountability and responsibility are complex. This can lead to a lack of strategic attention to palliative care as a whole.
This is compounded by an individual and organisational discomfort in contemplating mortality. There can also be a (perhaps unconscious) assumption that because death is inevitable there is nothing which can be done to improve associated experiences.
It is really important that those people who have positions of leadership speak about the importance of living with serious illness, dying and bereavement. It is very welcome therefore that the Scottish Government has recently committed to developing a new national strategy for palliative and end of life care. Whilst a national strategy doesn’t change anything in itself, it does help to focus attention and resources and activity.
Around 58,000 people die in Scotland each year, and there is much to be proud of in the way that communities and formal services respond to those impacted. However, despite progress over the past decade, there remains a long way to go before Scotland can be sure of its ability to fulfil the rights of its citizens towards the end of life. It is eminently possible to make those rights a consistent reality. To fail to do so is a conscious choice which reflects poorly on a wealthy and technically accomplished society.
Just as ‘it takes a village to raise a child’, it takes a community of public and professionals to provide care and support for people who are living with serious illness, dying and bereavement. There is no more appropriate time to renew our commitment to this undertaking than now, and no finer expression of our shared humanity.
Chief Executive, Scottish Partnership on Palliative Care