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How can we improve end of life care for someone with an intellectual disability or serious mental illness?
By iomh, on 10 October 2023
People with serious and persistent mental illness (SPMI) often have poor experiences of health care, including end-of -life care, yet their voices often go unheard, leading to decisions being made on their behalf. Nivedita Ashok describes research from UCL’s Marie Curie Palliative Care Department, which shows that people with SPMI want to make their own choice, just like anyone else.
People with a diagnosis of intellectual disability or a serious mental illness die much earlier from serious physical illnesses than the general population. Lack of support to have healthier lifestyles, only seeking help when very unwell, late presentation to services, delays in diagnosis, and insufficient treatment provision are all problems.
Despite this gap, they are often excluded from palliative care research, and their experience of healthcare services are often poor, e.g. failure to make reasonable adjustments.
Our research team has been studying these issues to identify the gaps and uncertainties in the evidence. The findings have helped us understand what service users, their families, and the professionals who work with them find challenging, and what they suggest can help improve this.
Our study asked: What can we learn from synthesis of existing perspectives about care of adults living with an intellectual disability, psychosis, bipolar affective disorder or personality disorder who also require palliative care?
Overall, we found there is not enough research to support best possible palliative care for some of our most vulnerable populations. Their voices often go unheard, leading to decisions being made on their behalf, rather than people helping them to be involved in their care.
We found eight themes: three of these being issues, four potential solutions, and one avenue where there are uncertainties.
One of the issues we found was inequalities in the access to care and treatment. This is a factor leading to a delayed presentation and treatment initiation, leading to worse outcomes:
“…People with SPMI may not have access to cure-oriented treatment in a timely manner, and “palliative care may become the treatment from the time of detection and diagnosis.”
Similarly, another issue was the presence of stigma amongst healthcare professionals against certain diagnoses, and the existence of diagnostic overshadowing (where a person’s symptom is assumed to be related to a mental health diagnosis rather than a comorbid physical health condition):
“A consistent picture of delayed or late diagnosis and diagnostic overshadowing appears in case studies. Complex and enduring mental health problems may contribute to these issues…”
The third issue identified was lack of training and educational opportunities given to staff, leading to difficulties in recognizing declining physical health:
“Additionally, family, informal carers and even staff in psychiatric group homes or nursing homes may not recognise the declining health of the person”
The solutions we identified include:
Ensuring that there is equality in the care given through identifying gaps, making reasonable adjustments and implementing educational and training sessions:
“I think… it is about equity – in that this is a population who is very vulnerable – and it is about… the valuing of human beings and it’s about humanity”
The second solution is finding a familiar place to provide this care:
“They recognised that there were limited choices offered to this patient group and acknowledged unsatisfactory outcomes when a patient was placed in an unfamiliar environment”
The third solution identified was adopting collaborative approaches.
Joint working between different professionals, the service user and their carers allows for more learning opportunities, and a better understanding of the difficulties faced:
“Individual houses and units within the intellectual disability organisations did not appear to share their experiences of palliative care provision with each other, and as a result, there was little organisational-wide learning gained from isolated interactions”
The final solution we found, is facilitating service users’ capacity for decision-making. There is no agreed upon way to assess capacity in these persons.
“… in practice, staff did not appear to have an agreed-upon way of assessing this, and different team members could have quite different opinions about a person’s level of insight”
We have choices to make like…where to die, how to die
Study participant
There were questions around the disclosure of prognosis, with no clear answer to the question- Can a service user be told about the severity of their life-threatening illness? Different opinions can sometimes come from a place of emotion or a perceived idea of what is best for the service user:
“People like us should know what is happening to us because … we have choices to make like…where to die, how to die, how to be buried. Yah…the person who is dying should know everything and people should let them make choices”
It is important that service users’ voices be used as the driving factor to make decisions surrounding their care. Service user involvement makes organizations more diverse. It also helps the service user feel empowered and valued and that their experience and perspective is going to be taken on board. All steps must be taken to help facilitate this, to ensure that equitable care is provided to those who need it most.
Dr Nivedita Ashok is a MSc Clinical Mental Health Sciences student at UCL and co-author of the study with Dr Daniel Hughes and Dr Sarah Yardley.