I recently attended a webinar on end-of-life care for people with intellectual and developmental disabilities. This marked the launch of new book on this topic. This edited volume includes a lot of useful case studies, and covers subjects such as do not resuscitate orders, accessible funerals, suicide, and many others. The book informs people about this sometimes taboo subject in a sensitive manner. I was privileged myself to contribute to one of the chapters, on living and dying well with dementia.
The keynote speaker was Dr Karen Ryan, consultant in palliative medicine. Dr Ryan spoke on the process of dying, drawing on her experience as a researcher as well as a clinician. She highlighted that a "good death" is unique for every individual. There may be common elements to a good death, such as experiencing dignity and respect, but of course concepts such as "respect" might be realised in different ways for different people. End-of-life care is a complex practice; sometimes there can be disagreement within multidisciplinary teams. Indeed, decisions can be ethically complex and distressing for those involved in making decisions, and legal uncertainties can further complicate matters. The recognition that someone is dying is clearly key, but some signs of dying may (by themselves) rather be symptoms of treatable problems. Dr Ryan noted that uncertainty is inherent in the dying process, and sometimes a person may pull through.
If a care plan is in place, it needs be reviewed when it is recognised that a person appears to be dying, or if there is not currently a care plan, one should be created . Holistic support is important that considers psychosocial, spiritual, religious physical, and medical needs. Communication with anyone involved in care, and particularly with families (as well as peers), is critical. People with intellectual disability may have limited ability to report on their distress, so awareness of any behaviours that may be associated with pain or other distress are important.
Regarding communication, perhaps the most challenging aspect for many people is communicating with people with intellectual disability themselves around death and dying. For the general population, it's usually taken for granted that a person who is dying should be made aware that they are dying (so they can, for example, prepare for death); by the same logic, there should be effort for people with intellectual disability to be made as aware as possible that they are dying, assuming the person is open to this information. Glancing back, planning forward was cited by the organisers as a useful accessible tool for discussing plans for end of life.
Indeed, for people with intellectual disability, communication will have to be tailored to the individual's level of insight and understanding. For someone with mild intellectual disability, there may be good scope for engaging in more complex conversations around factors such as preparing for funerals, life story work. For people with moderate intellectual disability, their understanding is likely to be more grounded in concrete experience (someone may have better understanding if they have previously experienced a bereavement). Regardless of someone's level of disability, offering closeness and just being there for the dying person is important.
Communication with family, in the context of intellectual disability, has often been affected by the high rate of people with intellectual disability living in residential institutions. However, regardless of the setting in which someone is living, families are likely to be experiencing grief. From my own experience speaking to families caring for someone with intellectual disability and dementia in the family home, their daily lives can become consumed with caring for the person with intellectual disability; it's likely some follow-up support will also be welcome for a family carer in this situation, after a person with dementia has died.
There was an active panel discussion following Dr Ryan's presentation. Prof Michele Wiese and Prof Philip McCallion, two of the editors of the book, emphasised how the book was written and edited during some of the hardest days of the COVID-19 pandemic, and various chapters throughout grapple with the added challenges of implementing the end-of-life care during a pandemic. Dr Ryan responded to a question on the difficult topic of assisted dying for people with intellectual disability by raising the point (relevant to the general population) that a lot of the demand for assisted dying may be related to currently unmet need in palliative care. Prof Mary McCarron noted how the book ends with a chapter on the future of end of life care, and on this note, Prof Roger Stancliffe noted that more work needs to be done on autistic people and people with cerebral palsy regarding end of life.
The book is out now - individual chapters are available for purchase for those interested in specific topics: https://link.springer.com/book/10.1007/978-3-030-98697-1
Related articles
Seminar: End of life and intellectual disability
Impact of COVID-19 on people with intellectual disability: part 2
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