Palliative care strategy - lived experiences and public views: research studies - key findings summary

5. Experiences of palliative care for adults

Experiences of declining health vary with place of care, for those living with different health conditions, and for people with diverse backgrounds, circumstances, cultures and beliefs.

5.1 Place of care

• For people at home, general practitioners (GPs) had key roles in providing palliative care. People valued personalised relationships with GPs; continuity and coordination of care; and the GP having the right expertise in managing their health conditions and symptom management, mental health, social and family problems.
• Family members valued relationships with district nurses and other community nurses caring for people dying at home, being treated as a whole person, and the nurses’ expertise and ability to get more help when and where needed.
• In acute hospitals, small acts of kindness were appreciated, as was pain management and holistic care from the hospital palliative care team, but shortages of staff and equipment and poor communication had negative impacts.
• When contacting unscheduled healthcare services, patients and carers prioritised safety and a timely response. Having previous experience of using services helped people navigate complicated call systems.
• People valued the extended roles of ambulance paramedics trained in palliative care who brought them safety, security, and good clinical care.
• Hospice and community palliative care services were highly regarded with many people highlighting individualised care, feeling respected and valued, encouragement to live well, emotional support for family and carers, and quality clinical care.

“Oh, the pain relief, they [palliative care team] were absolutely marvellous…it was like someone waving a magic wand because after I’d seen them for a few occasions, it was the first time that I’d slept properly in about six weeks.”

5.2 Different health conditions

People with dementia

• Palliative care could be important for people living with dementia and their carers, but they were less likely to ask for it or have access to specialist palliative care.
• Carers said they need care and support, and some had high levels of psychological distress, with depression, anxiety, and complicated grief. They valued continuity and good relationships, a safe environment, and a focus on the person and their dignity rather than the dementia.
• Providing sensitive and timely information about the natural progression of dementia helped carers retain a sense of control and be more able to plan for the patient’s death; carers found support through social networks, friends, family, and faith communities.
• Carers were sometimes unaware that people with advanced dementia develop eating and drinking difficulties and needed support to move to eating for comfort instead of struggling to maintain nutrition.

People with frailty

• People living with frailty tried to maintain a sense of self and adapted to gradual loss of independence and abilities while fearing loss of mental capacity or going to a care home more than dying and death.
• People worried about becoming a burden and needed help to understand changes in their health and wellbeing without a specific diagnosis including considering the benefits of more tests and treatments with trusted health and care staff.

People with conditions affecting major organs

• People with advanced heart or lung conditions and their carers live with illnesses that are unpredictable and hard to explain. They managed many medicines and multiple conditions, living day-to-day over many years while hoping to avoid emergency admissions for complications. People described looking for ongoing, personalised support while managing the burdens of caring, and a lack of coordination and shared care among hospital specialists, primary care teams and specialist palliative care services.
• People whose kidney function is getting worse valued honest but sensitive communication about palliative treatment and care as an alternative to starting on dialysis. This was also true when people are discussing the option of going on a transplant list for liver, kidney, heart, or lung disease.
• Liver disease is getting more common, and this group of people had high levels of stress and uncertainty due to the unpredictable nature of their illness and its complications, repeated hospital admissions, and lack of co-ordinated support to help them manage their disease. Coping with life and planning ahead were difficult, going to hospital means safe and expert care, and palliative care was usually offered very late.

People with cancer

• People living with metastatic cancer had a better understood illness journey of multiple cancer treatments and hospital visits. They experienced variable outcomes and could have severe or even life-threatening treatment side effects so symptom management and ongoing holistic support for the person and family were important for them.
• Many people living with cancer coped by having two futures in parallel, one of hope for recovery and another about getting worse and dying. Palliative care improved experiences at many stages of cancer journeys but the best ways of introducing it depended on the person, their family, and how information was shared.
• Timing of discussions was complicated for people with cancer: too early could be distressing; too late may mean missing out on a better quality of life or continuing treatments of low benefit. The commonest trigger for offering ‘palliative care’ was no further curative, cancer treatment options.
• Effective communication in cancer care about what palliative care offers, as well as positive experiences over time, addressed fears, stigma, and negative associations linking palliative care with dying, loss of hope, and withdrawal of care. People talked about palliative care as ‘restoring life and hope’, bringing ‘light and safety’ into dark and difficult situations, and being made to ‘feel like a person’ again.

People with neurological conditions and major stroke

• People with these health conditions experienced progressive disability, symptoms and complications, and increasing care needs. Interdisciplinary working and training, better integration of services in hospital and community, and improved recognition and good care of dying patients would help.
• People living with motor neurone disease tried to maintain control of their lives and keep a sense of normality and purpose where possible. Carers became experts in advocating for patients and gathering information while having high levels of stress and feeling overwhelmed at times. Shared decision-making about treatments like tube feeding or ventilation meant thinking about life or death scenarios. Palliative care was associated with dying and carers had serious concerns about lack of knowledge around care of a person dying with complex care needs among health care staff in acute and community services. Bereavement experiences were affected by the way the person died.
• Family members of people who had a bad stroke were distressed when offering palliative care seemed to mean a withdrawal of care.

People with learning disabilities

• People with these disabilities experienced reduced access to healthcare in general, late diagnosis of serious illnesses, communication problems, and limited knowledge amongst professionals and carers about when to involve palliative care.
• People with more severe learning disabilities relied on carers and support workers; those with milder disabilities might feel anxious about talking with professionals. Most people were not aware that they were going to die, carers worried about sharing bad news, and suitable tools to guide care and discussions were not being used.

People with severe mental illnesses

• People with severe mental illness also have a reduced life expectancy, and experienced stigma and late diagnosis of physical illnesses due to difficulties accessing primary healthcare, explaining symptoms and a lack of trust.
• Early referral when mentally well could help build relationships but people and their carers described negative impacts of poor integration of mental and physical health services and lack of coordination of multidisciplinary care. Being discharged by mental health services after many years could lead to people feeling abandoned.

5.3 Different situations, personal circumstances, cultures and beliefs

People living with financial or housing insecurity

• These people spoke about the daily struggles of living with complicated physical and mental health problems, social and financial stresses well before they developed a serious illness.
• Negative bias and stigmatisation from health and social care services, inflexible systems that did not respond to their needs, and less support from family members or informal caregivers all made finding the right support more difficult.
• Unsuitable housing restricted options people had for place of care and care around dying, rehousing or adaptations were too slow, there may be a lack of space, safety and privacy, or social isolation came from being moved to different accommodation; housing insecurity and rent costs could be distressing after someone died.
• People struggled to get the right information, had long waits for financial support, and worried about eligibility for benefits; health and social care professionals were central to signposting and helping with welfare needs and facilitating effective legal planning.

People in prison

• There are more older people in prison with palliative care needs and prisoners in general have poorer health. Prisoners and staff experienced additional challenges due to the physical environment, lack of access to equipment, difficulties with safe and effective pain management, poor relationships and mistrust of the prison system, and conflicting priorities of custody and care.
• Palliative care and care around dying in prison were improved by fostering relationships with families through facilitated visiting and with other inmates (including inmate ‘hospice’ volunteers), and palliative care specialists supporting prison staff to care for prisoners who are dying.

LGBTQ+ people

• Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) people suggested their needs and concerns could be improved by increased social support, institutional safety, economic and legal support, and advocacy to mitigate health and care barriers.
• LGBTQ+ people described their fears and worries about discrimination, stigma, gender assumptions, homophobia and transphobia, social isolation, and an undignified death.
• What mattered was inclusion of family in decision making, personal safety in clinical environments enabling disclosure of LGBTQ+ identity and maintaining autonomy and respect during and after a person’s death.
• Care may not be inclusive despite willingness of staff to learn with examples of insensitivity, misgendering and instances of poor physical care.

People from minority ethnic communities

• Individuals and families from different minority communities have their own values and preferences that change over time and are influenced by other cultures around them, so it is important to avoid generalisations while learning from people’s experiences.
• South Asian families (including those with Muslim, Hindu and Sikh faiths) used palliative care services less and experienced wider health and social inequalities.
• Discussions about palliative care, dying and death could be linked to loss of hope and possible hastening of the dying process; language barriers and limited interpretation services hindered communication but could be addressed through link workers with language skills and cultural understanding.
• Religious beliefs and practices were an important support as was belonging to a faith community with family and wider community members having a significant role in decision making.
• Home was often the preferred place of care for South Asian people due to privacy, cleanliness, suitable foods, faith rituals, and most importantly being with family, but some people worried about care at home becoming too complicated and a burden for family carers.
• Worries about hospital or hospice care included being alone, mistrust of white ethnicity staff being culturally sensitive and able to meet people’s spiritual, physical and hygiene needs with people appreciating appropriate food, prayer facilities, Asian TV, support for families and appropriate care around dying.
• For people from the various Chinese ethnic groups, cultural sensitivity, taboos about discussing dying, family oriented care and roles in decision making and care planning were important; barriers included language, lack of experience accessing health and social care and preferences for traditional Chinese medicines, while some people preferred to avoid a home death.
• Gypsy/travellers might have preferences for care by someone of the same gender and cultural rituals around dying that could be misunderstood because of the key role of the family which could include large numbers of family members asking for updates, gathering around the bedside, and sitting up all night to share memories after someone has died.