“The term “end of life” can strike terror in hearts and minds. But it is a fact of life: we are born, we live, we die. This Collection of research into end of life care deals factually and empathetically with what helps and what hinders how positively patients experience the time leading up to the end of life.
What helps is fairness, equal access to care, being able to make choices, honest conversations with family, friends and professionals, all enabling patients to make the most of the time left. What hinders is lack of equity in access to the services and support, the rights of all of us, whoever we are, wherever we come from, whatever our beliefs.”
Ann Whitfield, Community Leader & Patient Citizen Leader
and Public Contributor, Nottinghamshire
Towards the end of life, everyone should be able to live as well as possible, in the place of their choosing, and receive the care they want and need. Currently, this is not the case, and the most disadvantaged in society are least well-served. Inequalities, present throughout life, increase at the end of it.
End of life care is provided for people nearing the end of their life. It aims to make them comfortable by managing their pain and other distressing symptoms. It also involves emotional, social, and spiritual support for the person, their family and friends. This care is an important part of palliative care, which aims to help anyone with a life-limiting illness have a good quality of life. Palliative care does not necessarily mean a person is going to die soon - some people receive palliative care for years.
The COVID-19 pandemic threw a spotlight on end of life care. Many more people died at home than before, but many spent their last days in hospital or care homes without any loved ones around them.
All four nations of the UK recognised the need to improve palliative and end of life care more than a decade ago. There have been numerous government strategies, including a recent approach from NHS England and NHS Improvement, to transform care in 2021-26. New processes and systems have helped, but much more progress is needed. Particular areas of concern are inequalities in access to palliative and end of life care, and variation in their quality. If care is to improve, collaboration is needed across health and social care, charities and voluntary organisations.
To address the challenges, a range of organisations involved in palliative and end of life care have agreed on six ambitions for 2021-26. These include fair access to care for everyone regardless of who they are, where they live or their circumstances, and the need to maximise comfort and wellbeing. Informed and timely conversations are also highlighted. This Collection brings together recent examples of NIHR research that address these areas of need. The examples have been highlighted in accessible summaries - NIHR Alerts - over the past 18 months.
“Everyone severely affected by serious illness should have equal access to high quality end of life care for them to live life as well as possible, and die peacefully when the time comes. This is the number one priority for all patients and families, and a long-held ambition for practitioners in health and social care, and policy makers.”
Catherine Evans, Professor of Palliative Care, King’s College London
& Nurse Consultant in Palliative Care, Sussex Community NHS Foundation Trust
Making the most of conversations about end of life care
Many people feel uncomfortable talking about their wishes for end of life care. Yet not talking about them can mean that others make the decisions when the time comes. COVID-19 has raised awareness of death and dying, but they remain taboo subjects.
Everybody in their last months or years of life should have the opportunity for honest, sensitive and well-informed conversations about end of life care. The person at the end of life, and those close to them, should be at the centre of all decisions. Researchers have explored when and how to have these conversations.
Advance care planning
Advance care planning allows people to think and talk about the care they would like to receive, including in their final months of life. It may involve their loved ones. Through discussions with professionals involved in their care, an individual care plan is agreed and written down. This can cover any aspect of future health or social care and should be updated as circumstances change. It can be shared across care settings, including with loved ones, so that a person’s wishes are known.
These plans can help people receive the end of life care they want, and can make things easier for family and friends. However, healthcare professionals may be reluctant or confused about when to start advance care planning, and very few people have advance care plans. Many frail, older adults with multiple long-term health conditions do not have these plans. Professionals need guidance about when and how to begin advance care planning with this group of people.
A recent study examined whether emergency admission to hospital is an acceptable time to start advance care planning for older people. Advance care planning was generally welcomed by the people interviewed. They saw benefits for their physical and emotional wellbeing, and in helping to prepare for the end of life. They also valued the expertise of clinicians in planning future care. The findings suggest that emergency admissions could serve as a trigger for advance care planning for people over 70 years. This study has some limitations in its scope, but the team hopes it will prompt health and social care professionals to initiate conversations with confidence, knowing that this group of people value them.
“This Collection is important in demonstrating that older adults value opportunities to talk about what’s important to them now, and in the future at the end of life. We do people a disservice by not asking them ‘what matters to you’?”
Catherine Evans, Nurse Consultant
Conversation style matters when supporting parents
One of the most challenging conversations is between parents and doctors deciding whether to limit life support for critically ill babies. Most deaths of newborns (60-80%) follow the decision to limit life support. Parents and doctors must weigh up the risks of the baby’s death against survival with a severe health condition. Lack of any certainty adds to the complexity of this decision. New research reveals ways doctors can approach these conversations to better support parents at such a traumatic time.
Parents given options about their baby’s care were more engaged in decision making, and conflict with doctors was reduced. By contrast, parents presented with a clinical recommendation were less able to express their preferences and to engage with the situation. The research team are running training courses based on their findings to help young doctors and specialists in the care of newborn babies (neonatologists).
“In modern society, there is still a huge stigma around death and dying, which makes conversations difficult, and prevents the open discussions that would benefit the inherent issues in palliative care, some of which are highlighted in this Collection. Additionally, it is easy to make assumptions about what people want and what works because we haven’t had the conversations, nor do we have the common language to better understand people’s priorities and preferences, and make appropriate plans towards end of life.”
Annmarie Nelson, Scientific Director,
Marie Curie Palliative Care Research Centre, Cardiff University
Some groups struggle to access good end of life care
Everyone, wherever they live and whatever their background, should have equal access to high quality palliative and end of life care. However, despite the UK having an excellent range of charitable and NHS palliative and end of life care services, it is estimated that as many as 1 in 4 people are unable to access the care they need.
Inequalities in access are particularly striking among ethnic minority communities, and those living in rural and disadvantaged areas. Access is also unequal for people living with dementia, a learning disability, a serious mental health condition and those with an illness other than cancer.
The reasons for inequalities in palliative and end of life care need to be understood and addressed. Some are specific to different communities and groups; others, such as a lack of services, are relevant to everyone.
“It’s important that everyone has access to quality end of life care when they need it. But, for many, this isn’t always the case. Since March 2020 to December 2021, it is estimated that almost 67,000 people have died at home without the specialist care they needed. That’s why we need to open up the conversation around death, dying and grief; in our homes, our communities and, crucially, across our health and social care system too.”
Monica Mason, Senior Campaigns and Content Manager, Hospice UK
The provision of palliative care is patchy for children; access depends on where they live. Information about where children and their families would prefer to receive care is limited. Some families prefer hospital care, where the child is well-known to staff. Others choose hospices (which specialise in palliative care), or home, if they are fully supported there.
In reality, the majority of children with life-limiting conditions spend their last days in hospital. A recent study examined this and explored whether the child’s age, their condition or their background influenced the place of death.
This study found that around 7 in 10 children with life-limiting conditions die in hospital. Hospitals therefore need palliative care services, and currently not all have them. This in turn suggests that some children’s and families’ end of life care needs are not being met. Older children and those living with cancer are more likely than others to die at home or in a hospice. Children from ethnic minorities or deprived areas are more likely than others to die in hospital. This disparity needs further research but suggests that disadvantaged communities are less likely to receive specialist end of life care. More flexible services may be required to meet the needs of different groups.
People with a severe mental illness
People with a severe mental illness who are nearing the end of their life should be able to access the same care as everyone else. However, it is often unclear who should manage their care. Mental health staff may not feel equipped to manage end of life care; end of life care specialists may feel unable to treat someone with severe mental illness. There is little research or policy in this area, and teams often lack guidance.
New research explored the end of life care experiences of people with schizophrenia, bipolar disorder, major depressive disorder, or other severe mental illness. The study found that people with a severe mental illness are unlikely to receive the most appropriate end of life care. Its recommendations include close partnerships and communication between mental health and end of life care teams, and finding ways to support people to die where they choose. Professionals need more training, support, and supervision. This might also reduce stigma and prejudice against people with severe mental illness at the end of life, especially those who are homeless.
Gypsy, Traveller and Roma communities
Gypsy, Traveller and Roma communities lack equal access to healthcare services, including at the end of life. The barriers they face include discrimination, lack of awareness of services and how to access them, and illiteracy (being unable to read).
New research explored these communities’ engagement with palliative and end of life care services. It described strong family and community values, distinct health beliefs and practical barriers to healthcare access within Gypsy, Traveller and Roma communities. Better understanding of these factors could help healthcare professionals and policy makers take a more sensitive and personalised approach to the care offered to these communities. Members often had a strong preference to die at home. Increased awareness that some services (such as Hospice at Home) could help them to die at home, could reassure them that appropriate services are available.
“The Collection highlights vital understanding on why care provision is unequal, who are the priority underserved groups like children, people who are homeless, and what is needed to drive improvement and transform care for all near the end of life.”
Catherine Evans, Nurse Consultant
Help with medicines at home
Access to medication whenever it is needed
Many people would prefer to die at home. Achieving this usually relies on the presence of family or friends as carers. Improved access to palliative medicines, such as painkillers and anti-sickness medication, could help people stay at home longer.
The National Institute for Health and Care Excellence (NICE) Quality Standard states that adults approaching the end of life and their carers should have access to support 24 hours a day, 7 days a week. This includes access to medicines. Nurses and pharmacists in the UK can be trained to prescribe medicines and in some areas, community pharmacies have extended opening hours. GPs can also prescribe medication before it is needed (‘just in case’) so any symptoms can be relieved swiftly and without delay.
Despite these initiatives, many people at the end of life do not have access to the medications they need. New research analysed questionnaires from healthcare professionals working in the community, to explore how they provide palliative medicines at home. The study also gathered views on how effective the system is, and what factors make a difference to their ability to support peoples’ access to medicines.
The researchers’ specific recommendations include the need for more community-based nurses who are trained to prescribe. Nurses and pharmacists should have easier access to electronic patient records about prescribing in the way GPs do. And greater integration of services would help. Community pharmacists need to work more closely with the healthcare team and become an active part of the palliative care team. These changes could help prescribers work more safely and efficiently, and speed access to medicines for people at home nearing the end of life.
“There is a huge lack of research in palliative care and this Collection is an excellent example of how NIHR supports researchers in this area. I look forward to future calls for research into palliative care that challenge some of our assumptions, and that tackle other issues such as financial insecurity, and death literacy.”
Annmarie Nelson, Scientific Director
Support with managing medicines at home
While improved access to palliative medicines would help people living at home, managing a complex array of medicines can be a source of stress and difficulty. Recent research sought views of patients and their family carers. They found the work of managing medicines difficult, especially at the end of life. Family carers needed to organise, collect, store and give medicines alongside other care tasks. Some commented that they were not informed of useful resources, and had to find them themselves. Many were worried about pain control, which was not always achieved.
As part of the same project, researchers explored healthcare professionals’ understanding of the experiences of patients and family carers when managing medicines in end of life care. Healthcare professionals had different levels of awareness of the difficulties faced by patients and families. They described ways to support patients to take medications, but most focused on prescribing issues rather than the patients’ points of view. Some simple, quick methods that healthcare professionals could use to reduce the burden on patients and their families were suggested. These include writing clear instructions on the box, and giving out laminated prompt cards for patients to record daily doses and wipe clean each week.
Overall, family carers and healthcare professionals described a complex system of care around palliative medicines which lacked effective communication and coordination. The researchers suggested that a named healthcare professional should support and guide patients and family carers through the system. This could improve the experience of care towards the end of life.
“The Collection identifies opportunities for strategic investment in community healthcare for people to remain in their usual place of care at the end of life, safely and comfortably. Essential is investment in community nurses and pharmacists to minimise distressing symptoms by increasing training and resources for skilled non-medical prescribers working with GPs.”
Catherine Evans, Nurse Consultant
The NHS Long Term Plan commits to making palliative and end of life care more personalised and more accessible to everyone. This should address health inequalities and ensure that everyone’s wishes are discussed and their needs met. More people should be able to die in the place of their choosing.
Personalised end of life care requires conversations that focus on what matters to the individual, and involves those close to them. Healthcare professionals need to look for opportunities to initiate conversations, and conduct them in a way that best supports people to make difficult decisions. This Collection highlights examples of NIHR research that provides guidance. It showed that emergency admission is an appropriate trigger for advance care planning for older people. And providing options not recommendations helps parents of newborns engage with end of life care decisions.
Access to the good quality care that helps fulfil people’s wishes at the end of life remains uneven. Inequalities often affect those who have faced disadvantage throughout their lives. This Collection highlights inequalities faced by several groups and offers recommendations. These include the need for close partnership between services caring for people with severe mental illness, and improved understanding of barriers faced by Gypsy, Traveller and Roma communities.
Many people would prefer to spend their last days and weeks at home. Good access to palliative medicines, and support with their management, allows rapid relief of symptoms, at any time. Research highlighted as part of this Collection suggests nurses and pharmacists need easier access to electronic patient records about prescribing. A key professional to support and guide patients and carers through the healthcare system could also improve the experience of care at the end of life.
Good end of life care is complex and brings together the best of health and care services. This Collection demonstrates the efforts being made to improve the care on offer. Above all, it highlights the clear need for everyone, regardless of their circumstances, to have access to that care at the end of life.
“Everyone will be affected by dying, death and bereavement. By 2040 we expect the need for palliative and end of life care will have increased by up to 42%. Marie Curie is here to support everyone in the UK through all aspects of dying death and bereavement and to fight for a society where everyone has the best possible experience at the end of life, that reflects what is important to them. It is fantastic to see these examples of NIHR funded research that are exploring issues of access, choice and quality regarding palliative care, issues that will be key in reducing the inequity that exists in palliative care today.”
Marie Curie, UK end of life charity
You may be interested
In addition to the examples highlighted as part of this Collection, other NIHR studies into palliative and end of life care are published or ongoing. In addition, a new call for research is planned in 2022 to address the key areas of health inequalities and access to end of life care illustrated in this Collection.
Thanks to Marie Curie for providing the header image for this Collection.