Start to talk early with people with intellectual disabilities about their preferences in palliative care

Start to talk early with people with intellectual disabilities about their preferences in palliative care

To ensure that the end-of-life care is in line with needs and wishes of people with intellectual disabilities (ID), it is of great importance to talk early about future care and treatments. This is called Advanced Care Planning (ACP). ACP is not often used in care for people with ID. Thanks to a new ACP programme for this particular group, healthcare professionals can better apply ACP for people with ID. This is a result of the dissertation of Hille Voss, researcher at Nivel. Her PhD defence took place the 22nd of January at the Vrije Universiteit Amsterdam.

ACP is defined as discussing goals and preferences for future medical treatment and care, and to record and review these preferences if appropriate. This improves the quality of life. Despite the importance of ACP, little is known about the use, content and effects of ACP for people with ID. Interviews with healthcare professionals, people with ID and relatives showed that taking and giving time, individualized care and teamwork is important. Besides that, it is essential to figure out how a person with ID can be involved in ACP.

New programme improves ACP competences of healthcare professionals
Together with healthcare professionals, people with ID and relatives, Nivel and care organisation Koraal developed an ACP programme which is specifically meant for healthcare professionals working with people with ID. This was developed in order to improve essential ACP competences for professionals, such as recognising healthcare needs and communicating and reporting about the preferences of the person. The program consists of an information pack, two training sessions and an implementation interview about the use and sustainment of ACP within the care organisation. The new programme was implemented within six care organisation for people with ID. Evaluation proved that participating professionals improved their ACP competences and used them better and more often.

About the research
The ACP programme is subsidized by the ZonMw-programme Palliantie. The ACP programme was developed using co-creation with researchers, professionals, people with ID and relatives. Methods included a systematic literature review; analysing medical files; and interviews with people with ID, relatives and healthcare professionals about their preferences and needs for ACP. Professionals filled in a digital survey for the evaluation of the ACP programme six months after participation in the programme.