Literature reviews

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.

View the full literative review

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.

View the full literature review

 Education

  • 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.

Communication

  • 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.

 Collaboration

  • 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.

 

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.

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 nhsnwlccg.endoflife@nhs.net

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