Following advice from specialist voluntary organisations, such as St Mungo’s and Groundswell it was decided that a literature review using existing research would be the best approach in terms of understanding what we need to improve on in terms of community based specialist palliative care for people from a number of different groups and demographics, including people who are experiencing homelessness or live with a learning disability.
Recommendations and how can this be taken forwards in the Community- based Specialist Palliative Care Improvement Programme.
Planning for end of life alongside discussions about health (parallel planning): when healthcare professionals speak to people about their health due to concerns, they should use this as an ‘entry point’ to begin thinking and talking about that person’s future options and wishes. In other words, this would involve talking about options which would help them live well now and their options when their condition deteriorates. This will help feed in the idea of palliative care services, in a way that feels supportive.
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Better multi-agency working to support planning care and building collaborative relationships between organisations: we need to create a culture where palliative care is seen as everyone’s job in health and social care. Delivery of regular review meetings about individual patients, with representatives from multiple services including the person’s key worker would promote this as well as improve relationships between health, palliative care, drug and alcohol services, the voluntary and social sectors. We could also explore ‘twinning’ or joining up of local hospices to hostels as this has been successful in Manchester.
In reach to hostels/day centres and outreach- bring care to people: many people experiencing homelessness who are seriously ill remain in hostels, as such healthcare should reach into hostels and residents. In reach helps:
- Identify those with poor health and enable conversations about their health and end of life care, to support care planning.
- Develop ways to address unmet palliative needs through working in partnership and training hostel staff and frontline staff.
- Further explore the provision of virtual and remote support through Microsoft Teams to hostels.
- In addition to in reach, services should also reach out and identify patients not accessing services and deliver these to them. The role of peer advocacy approach could be further explored as this improves the likelihood of people experiencing homelessness attending appointments.
Better training and education for hospice/provider staff: support staff in hospices/providers and specialist palliative care settings to care for people, whose behaviour is often considered challenging. Training should focus on making care inclusive, tailored, more trauma informed e.g. recognising the impact of past and present trauma, include modules on problematic substance use (PSU), Pathway model/services, and the Homeless Palliative Care Toolkit.
Need for greater provision, access and choice: across the board (e.g. not just community specialist palliative care) there is a lack of choice for patients experiencing homelessness, particularly in terms of access to 24-hour support for dealing with serious illness.
Potential improvements to end of life care for people living with learning disabilities were grouped under four headings – education, communication, collaboration and health and social care delivery.
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- Potential educational incentives included a hospice resource folder containing information on local intellectual disability services, an intellectual disability toolkit designed to support hospital professionals and recruitment of a hospice intellectual disability link nurse to encourage integrated learning.
- Some studies suggest specific areas to focus on such as breaking bad news training for staff in intellectual disability settings, advanced training on recognition of non-verbal signs of pain and leadership skills.
- There is evidence that education in the form of a study day for paid carers can lead to improved knowledge and increased awareness about end-of-life care.
- A multi-layered approach to learning, delivered at both the individual and organisational level, contributed to successful implementation of the ‘Steps to Success Palliative Care Programme’ for people with intellectual disabilities living in residential care homes.
- Professionals working within intellectual disability and palliative care services express a desire to learn from each other through joint education, exchange placements and liaison working.
- Small group discussion between peers and hearing the perspectives of people with intellectual disabilities themselves can be effective educational techniques.
- Wider approaches include the inclusion of palliative care for people with intellectual disabilities as a core component in medical and nursing curriculums and examinations.
- A person-centred approach incorporating compassion and empathy are important when caring for people with intellectual disabilities who have difficulty communicating.
- Taking time to build relationships, gain trust and confirm understanding can facilitate effective communication – this includes recognizing cultural backgrounds, identity and spirituality when planning for end of life
- As people with intellectual disabilities are likely to take longer to express themselves and may rely on communication tools, health care professionals should allocate more time for consultations. This is particularly important when talking about death and dying.
- Continuity of care and involvement of a family member can also aid communication.
- Helping people with intellectual disabilities to understand and cope with bad news requires building of knowledge gradually over time and support from the person’s family and professional network.
- Translating medical terminology into simpler concepts maximises involvement in decision-making.
- Involving speech and language therapists is another approach.
- Pictorial books designed to help people with intellectual disabilities understand and discuss terminal illness can be helpful.
- Structured models for breaking bad news to people with intellectual disabilities have also been developed.
- Tools to aid assessment of physical symptoms include the ‘DisDAT’ (Distress Assessment Tool) developed for people with severe communication problems including those with intellectual disabilities, the ‘REPOS’ (Rotterdam Elderly Pain Observation Scale) and the Abbey scale. The ‘PALLI’ (PALliative care: Learning to Identify in people with intellectual disabilities) is a tool for use by proxies.
- Collaborative working between palliative care services, intellectual disability services and carers is an effective way to deliver care to people with intellectual disabilities.
- Often people with learning disabilities will have complex needs and see numerous specialists (e.g. psychiatry, neurology) and these should also be involved in collaborative end of life care planning
- Earlier involvement of palliative care builds familiarity and trust between staff and services.
- Incentives such as regional meetings, joint working or shadowing in both clinical areas can be effective.
- A mixed methods study described the United Kingdom’s first specialist palliative care home for older people with intellectual disabilities, demonstrating positive results for quality of life.
- Key to effective collaboration is a multidisciplinary approach allowing shared expertise between intellectual disability, specialist palliative care, hospital services, community teams and GPs.
- Specialist palliative care professionals found that liaising with intellectual disability professionals who knew the patient well was helpful around issues of mental capacity and consent.
- Link workers acting as conduits between palliative care and intellectual disability services are also helpful.
- Working collaboratively with the family should encompass recognition that they know the person best, building trust, sharing information, involving them in decision-making and supporting them emotionally.
Health and social care delivery
- Several studies have highlighted the role of the GP as a key player in identification of need and coordinating referrals for people with intellectual disabilities.
- There is good evidence that health checks identify unmet health needs, including life-threatening conditions. The Annual Health Check is a chance for the GP, the person with an intellectual and developmental disability and those who support them (if relevant) to review the individual’s physical and mental health, it also helps to establish trust and continuity of care.
- Developing community-based services with input from GPs and district nurses will support people with intellectual disabilities living at home and allow them to die there.
- Delivery of palliative care to this population is often dependent on committed staff who are willing to work beyond their call of duty.
- Delivery of highly individualised care requires teamwork, empathy and enthusiasm.
- Many studies highlighted the value of good management and support for staff within their own organisation. This should encompass emotional and bereavement support.
- Building resilience and empowering the workforce enables them to deal with grief and in turn support the patient.
- In organisations where managers provided positive role modelling by talking about death and dying, junior staff were more likely to feel comfortable discussing these topics.
- Adequate staffing and minimal staff turnover were also important to deliver effective and sustainable palliative care to this population.
- Simple practical adjustments that help people with intellectual disabilities engage with palliative care services include allowing the presence of a family member or keyworker during hospital admissions, consultations and investigations and visits to hospital or treatment units beforehand.
- Good practice also includes the integration of the views of service users into models of care.
During the first stage of public engagement on the NW London adult community-based specialist palliative care (CSPC) review, it was suggested that younger adults (approximately 18-45) may have specific needs that were not being fully considered.
NW London hospices and stakeholders were asked through the Model of Care Steering Group to provide any specific insights and advice for this age group and desk research was also undertaken, reviewing the information published by health providers, charities and journals.
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The 18-45 age group
- This age range is broad and there is little available best practice or evidence covering the whole group (i.e. late teenage years up to middle-age).
- This paper includes some of the learnings and evidence focused on children and young people as it may be transferable as young people move into adulthood.
- Available evidence for teenagers and young adults (13-24 years) suggests this age range has different healthcare needs than either children or adults due to their biological, psychological, and social developmental changes.
- Many of these young people (13-24) will have developmental delay, while others will be diagnosed with conditions such as cancer or organ failure which do not usually affect cognitive function.
- Many young people with chronic progressive conditions reach a crisis in terms of physical deterioration in adolescence or early adulthood with many dying in their late teens or twenties.
- However, research also shows a growing number of children and young adults with life-limiting and life-threatening conditions are now living into adulthood.
- It is extremely difficult for anyone, especially young people in their 20s and 30s, to be told that their treatment(s) haven’t worked and they require end of life care.
- Many younger people may not yet have had personal experience with death or encounters with the end of life phase.
- Some young people with life limiting conditions are capable of contributing to planning, discussions and decision-making about their treatment.
- Conversations about advanced care planning with younger people may involve a wider network than other age groups - if the younger person or their parents or carers (as appropriate) wish, other family members (for example siblings or grandparents) or people important to them (for example friends, boyfriends or girlfriends) should also be given information, and be involved in discussions about care.
- Moving from children’s services into adulthood at age 18 (transition) can be a stressful time for young adults and their families.
Key findings and good practice
General principles for good palliative care are the same for this age group (18-45 years old) as others - for example the importance of end of life and care planning and the importance of the patient/family/carer(s) having a central voice within this.
There are also some specific points relevant to this age group.
Communication, information and decision making
- Children and young people with life-limiting conditions and their parents or carers should be asked if there are other people important to them (such as friends, boyfriends or girlfriends, teachers, or foster parents) who they would like to be involved, and if so how they would like those people to provide a supporting role.
- It should be recognised that children and young people with life-limiting conditions and their parents or carers have a central role in decision-making and care planning.
- It is important to discuss and regularly review with children and young people and their parents or carers how they want to be involved in making decisions about their care, because this varies between individuals, at different times, and depending on what decisions are being made.
- It should be clearly explained to children and young people and to their parents or carers that their contribution to decisions about their care is very important, but that they do not have to make decisions alone and the multidisciplinary team will be involved as well.
- Children, young people and parents/carers must be given enough time and opportunity for discussion when difficult decisions are made about end of life care.
- They should be asked how they would like to discuss the life-limiting condition. For example, by asking: which topics they feel are important and would particularly want information on, or whether there are topics they do not want detailed information on (and discuss their concerns).
- Regular reviews with them should take place because their feelings and circumstances may change over time, and they may need different information at different times.
- Be alert for signs or situations that the young person or their parents or carers need more information or discussions, for example if they are more anxious or concerned, the young person's condition deteriorates, or a significant change to the treatment plan is needed.
- Young people and their parents and carers should be provided with the information they need on: their role and participation in Advance Care Planning; the membership of their multidisciplinary team and the responsibilities of each professional; the care options available to them, including specific treatments; and their preferred place of care and place of death.
- If treatment proves ineffective and the young person and their family want to take an active role in decision making about end of life care the established dynamic between the young person and their family and the clinician needs to shift, sometimes quickly from the clinician leading the decision making.
- There is growing evidence to support a more collaborative approach to end-of-life care planning, not just between young people, their families and clinicians but in terms of the wider collaboration between specialist palliative care and the other specialities. What is far less clear is how best to achieve this collaborative approach.
- A named key-worker is essential to ensure that appropriate input is provided and monitored for each young person and their family. The person holding this position may change over time.
- Be aware that continuity of care is important to children and young people and their parents or carers. If possible, avoid frequent changes to the healthcare professionals caring for them.
- Some evidence points to the potential benefits of introducing palliative care teams earlier in the care trajectory to facilitate opening conversations to end-of-life concepts before disease-/symptom-related “crises” or the cessation of active (curative) treatment.
- Integrated models of care, where palliative care co-exists alongside disease specific care, may help young people exercise choice.
- However, adult services may be unable to meet young peoples’ emotional needs or support them to realize their aspirations.
- The transition from children’s to adult palliative care services (at age 18) can be challenging and should be managed in line with NICE guidance.
- Poor planning for this transition can result in disengagement or a worsening of the young person’s condition and poor execution of the transition process can lead to poor outcomes in the young person’s health, social participation and education.
- Models of care used for young people need to be adapted as they mature and begin to access adult services, and as their needs and preferences change.
Psychological and bereavement support
The psychological needs of younger people are sometimes not addressed adequately. Young people facing their own death need opportunities to explore their feelings without fear of upsetting other members of their family. Depression in this group is not uncommon. Descriptive evidence from cancer units, children’s hospices and voluntary organisations shows that bringing young people together for treatment or recreation can be supportive.
- Be aware that other family members (for example grandparents) and people important to the young person (for example friends, boyfriends or girlfriends) may need support. This may include social, practical, emotional, psychological, and spiritual support.
- Be aware that siblings will need support to cope with their brother's or sister's condition and death, or the effects of their parents' or carers' grieving. This may include social, practical, psychological and spiritual support.
The purpose of the reviews was to identify the reasons why people do not have fair and equitable access to community based palliative care. As part of this we specifically looked at barriers to accessing and improving care, challenges for those working within the healthcare system and how to make improvements.
Each review outlines a number of recommendations to be taken forward and these are detailed below. The full literature reviews can be found via the links below. Our aim is drive positive outcomes for these vulnerable groups.
View the literature review
We thank those who have helped us develop the reviews and provided invaluable feedback and support to make sure we got them right.
If you would like to provide feedback on the literature reviews email email@example.com