Palliative care at home preferred for people with intellectual disabilities

Health professionals would prefer to provide palliative care to people with intellectual disabilities in their home environment. This is possible in four out of five cases. Deciding whether a patient can remain at home during the final stage of life requires careful consideration. The most frequently reported reasons for deciding to move someone are a lack of the required expertise and unsuitability of the residence. Researchers from the Netherlands Institute for Health Services Research (NIVEL) have published these findings in the Journal of Intellectual Disability Research.

Virtually all health professionals (89%) believe that, as much as possible, palliative care for people with intellectual disabilities should be provided in the familiar surroundings of their home environment – in the family home, group home, or unit in a care facility. Also, every effort should be made to ensure that care and expertise is available 24 hours a day. The decision to continue to care for the patient at home is usually based on the familiarity of the environment and the expertise of the health professionals. In practice, four out of five people (79%) with intellectual disabilities are able to receive palliative care at home. The researchers found that the main reasons for deciding to care for a patient away from the home environment were not being able to provide enough expertise in the home and unsuitability of the residence (for example, because there was not enough room for a hoist).
The wishes of the patient
Nearly three quarters (72%) of the health professionals believe that a patient’s wishes should carry the most weight when making a decision about a possible move. Forty per cent believe that this can even be at the expense of quality of care. So it is interesting to note that, when deciding to move a patient, health professionals explicitly mentioned taking the wishes of the patient into account in only 8% of the decisions that were studied.
Careful consideration
The researchers recommend that intellectual disability services should formulate a policy on when palliative care can be provided at home, and provide sufficient support for this. The final decision should be taken jointly and, as much as possible, should also explicitly involve the patient with an intellectual disability. NIVEL researcher Anke de Veer: “Patients often want to stay in their own familiar surroundings, and health professionals would also really like to be able to provide this kind of end-of-life care for the patient. Even so, this shouldn’t automatically be assumed to be the starting point. You have to look at a patient’s needs and wishes on an individual basis, and carefully consider where and how you can provide the best quality of care."
The study
The results are based on a questionnaire that was sent to physicians who work in intellectual disability services, general practitioners, nurses, and social workers. A total of 718 completed questionnaires were returned (46% response rate). The respondents answered questions about the considerations they take into account when making decisions about a whether to move a patient. They were also asked to describe the considerations that played a role in the palliative care they most recently provided to a patient. The researchers were thus able to document these considerations for 255 patients.