Palliative and end-of-life care modern service framework announced
This week, Stephen Kinnock, the Minister for Care, announced that the Government are developing a palliative and end-of-life care modern service framework for England, to be published in spring next year. This announcement is in line with delivering on one of the key shifts from the ten-year health plan, shifting care out of hospitals and into community settings.
The Minister identified the following challenges facing the sector:
Delays in early identification of individuals approaching the end of life
Inconsistencies in commissioning practices across integrated care boards
Workforce challenges in both universal and specialist services
Gaps in 24-7 palliative care provision
Limited uptake and integration of personalised care and support planning, including advance care planning.
The initial announcement doesn’t address the essential role that social care will play in delivering palliative care in communities. Earlier this year, we responded to a call for evidence from the Health and Social Care Select Committee, where we addressed key issues in end-of-life care for people living in care homes.
Exclusion of people in care homes
A fifth of the population die in a care home, yet they often fall outwith the palliative and end of life care provision. 64% of people with dementia die in care homes, yet they often seem to be missed and not considered for specialist palliative care. Care home deaths are more likely to be slow, as attributed to degenerative illnesses, and the lack of a definitive threshold for end-of-life means that they often miss out on specialist support. Through our adviceline we see this manifesting in lack of access to pain relief or equipment, often due to confusion around where the NHS’s responsibilities begin and the care provider’s end.
Ongoing lack of contact with healthcare specialists
Unfortunately we know that access to healthcare professionals while living in residential care is an existing challenge. We hear from people who are prescribed end-of-life drugs without a doctor having seen them, or people who have prescriptions signed but never end up being given the medication. Consultations about pain management are often done by care staff without end-of-life training, not healthcare specialists.
Advance care planning and family involvement
In order to see quality end-of-life care for people living in care homes, we need to see an increase in advance care planning. This must include the person’s loved ones and representatives, who know them best. Communication at this time is essential - we have heard from people who haven’t been told that their loved one is at end-of-life until they go in to visit. Unfortunately we know that people who challenge decisions being made at end-of-life, such as being put on nil-by-mouth, can be subject to reprisals such as visiting restrictions. To have contact with their loved one prohibited at this already distressing time can be traumatic for families. Often disputes around end-of-life care come in when there are different interpretations of the person’s health and behaviour - for example staff members who don’t know the person well may miss changes in behaviour that indicate a decline in health, or staff may not realise that loved ones are helping the person to eat and drink if they are not involving them in care planning. It is essential that representatives are involved in care planning throughout, recognising their essential role as a Care Supporter, to ensure end-of-life care is informed and suitable for the person and their health.
Staff and the provision of care
Due to a lack of specialist training, care workers often aren’t equipped to handle tasks that are required as part of delivering end-of-life care. This can lead to concerning practice being carried out with little oversight. We hear through our adviceline of poor practice such as withdrawal of fluids with minimal oversight, or GPs putting someone on nil-by-mouth after only having spoken to staff.
Our recommendations
Palliative care specialists need to have a bigger role in end-of-life care for people living in care homes.
Residents need medical professionals to ensure the right tools are used to determine pain level, thirst etc.
When the decision is made to allow someone to decline it should be clearly evidenced and monitored, with the involvement of the person and their loved ones.
Care staff need more thorough training in how to support someone who is at end-of-life, but medical professionals should be brought in to make assessments and provide medical interventions, using an approach that centres the person in care and their right to autonomy and dignity in death.
Proactive steps need to be taken to instigate advanced care planning wherever possible, involving the resident and their loved ones to ensure their wishes are adhered to. These plans should be regularly reviewed.
If the Government implemented the legal right to a Care Supporter, to be their trusted eyes, ears and voice at all times, this would help with conversations and decisions and provide comfort to the person, especially at end of life.