Two thirds of Scots will die at home, in a care home, or in a hospice by 2040, if current trends in where people die continue, despite this currently being where less than half of deaths occur, a new study has concluded. However, the research from Marie Curie, University of Edinburgh and Kings College London has warned that without radical investment in community health and social care services then hospital deaths will start to rise again and could peak at 37,089 (57 percent) in 2040.
In response to the research, published by BMC Palliative Care, charity Marie Curie is calling on the Scottish Government and Health and Social Care Partnerships to make care of people living with terminal illness a top priority.
The research predicts there will be nearly 16 percent more deaths in Scotland in the next 20 years taking the annual figure to 65,756. If current trends continue, the proportion of people who die at home will increase from 23 percent in 2016 to 29 percent by 2040. Similarly, deaths in Scottish care homes will increase by 10 percent from 19 percent to 29 percent over the same period. The number of people dying in hospital will fall, although hospital will remain the most common place to die.
The findings contrast with a previous study reporting trends in England and Wales which found that care homes could overtake hospitals as the most common place for people to die by 2040.
The report makes three core recommendations:
- To increase and upskill a community health and social care workforce through education, training and valuing of care work.
- To build community care capacity through informal carer support and community engagement.
- To stimulate a realistic public debate on death, dying and sustainable funding.
The research concludes that increases in end of life care at home is very unlikely without additional investment in community-based care, including care home capacity. Worryingly, the number of care home places is currently falling.[i] Increases in the number of people dying in care homes will only occur if there is further investment in care home capacity and an increase in staff in these settings. Care home staff need to be better equipped to care for the increasing number of people, many with advanced dementia alongside other conditions, who will die in the care home setting. Investment in palliative and end of life care education and training as well as better remuneration in the social care sector is needed.
In a recent Marie Curie opinion poll, 61 percent of Scots said they would prefer to die at home.[ii] Marie Curie is calling on the Scottish Government and Health and Social Care Partnerships to make care of terminally ill and dying people a top priority, and to realise the Scottish Government’s commitment to double palliative care services in the community[iii]. This will go some way to ensuring these projected trends continue. Hospitals must also be given extra resource to support people with a terminal illness to be cared for and die there, as there will always be people who need and want to be cared for and die in a hospital.
Anne Finucane Lead author and Marie Curie Research Lead said: 'Our research found that increasing the number of health and social care professionals working in the community needs to be a priority if Scotland is to provide end of life care for people who prefer to die in their usual place of residence. Identifying and providing information and support for informal carers, often family members, is also crucial. Volunteers, friends and neighbours could also play a vital role by checking on people approaching the end of life in their own community, offering to help with practical tasks, offering respite or even just being present with anyone who may be worried or on their own.'
The rise in the number of deaths we are expecting in Scotland in the next two decades should be a red flag for the Scottish Government and a call for action. Our study found that hospital will remain the most common place to die in Scotland in 2040, in all our scenarios. This contrasts with findings in England and Wales, where deaths in care homes and at home were projected to overtake deaths in hospital. Our findings show that growing pressures on services in Scotland will be felt across hospitals, care homes and home-based care settings. This calls for a strategic and joined up response across settings to ensure that everybody receives good quality care in their final months of life.– Anna Bone, author and researcher at the Cicely Saunders Institute
Reflecting on the findings, Richard Meade, Marie Curie Head of Policy and Public Affairs, Scotland said: 'Supporting terminally ill people and those at the end of life needs to be a much higher priority for the Scottish Government and Health and Social Care Partnerships. We need to invest much more in our health and social care services in the community, as well as in our hospitals, so that people get the care and support they need not just now, but for the future. Without radical investment now the Government will not only fail to achieve its ambition that everyone who needs palliative care will get it by 2021, but many more could be missing out in the years to come and that will be a national tragedy.'
Marie Curie has a wealth of materials to help people plan for the end of life, wherever they are in the process, including free conversation starter cards, checklists and inspiring articles and resources at mariecurie.org.uk/talkabout. For questions about terminal illness call the Marie Curie Support Line free on 0800 090 2309.
Update: Place of death debated in Scottish Parliament
On 8 January 2020, this research was debated in the Scottish Parliament. In that discussion, MSP's highlighted the research findings as well as the recommendations and priorities coming out of this research:
- Make care of terminally ill people and those at the end of a much higher priority and support sustainable funding of services.
- Invest in community-based care including care home capacity.
- Invest in and upskill a community health and social care workforce through education, training and valuing of their work.
- Hold a public debate on death, dying and bereavement.
The debate was covered on BBC online and streamed live on the BBC and on Parliament TV and covered by social media channels.
Watch the debate or read the transcript