Respecting the autonomy at the end-of-life of people with intellectual disabilities.

Francke, A.L., Bekkema, N., Hertogh, C.M., Veer, A.J.E. de. Respecting the autonomy at the end-of-life of people with intellectual disabilities. Palliative Medicine: 2012, 26(4), p. 645. Abstract. 7th World Research Congress of the European Association for Palliative Care (EAPC), 7-9 juni 2012, Trondheim.
Background: In people with intellectual disabilities (ID), respect for autonomy has to match with the cognitive and communicative possibilities and impairments of these persons. Since most people with ID are highly dependent on others, they need responsible and caring caregivers to maintain their autonomy at the end-of-life. Aim: To gain insight into how relatives and professionals can respect and support autonomy of people with ID in the very last phase of life. Methods: In this qualitative study 12 cases of recently deceased people with ID were reconstructed. Half of them died of cancer, while the others died from other chronic diseases or ‘old age problems’. A total of 47 relatives, doctors, social workers and nurses were interviewed using a semi-structured topic list. A cyclic process of data collection and qualitative analysis was used to reach saturation. Results: Attitudes and skills that are important for respecting the autonomy of people with ID at the end-of-life are: (1) Paying attention to the - often changing - information needs, preferences and capacities, as well as attention to the patient’s response to the information and care given; (2) Taking responsibility for communication with and involvement of the person with ID in decision-making; (3) Being creative in finding ways to involve people with ID in decisions; (4) Careful assessment how the person with ID responds to attempts of involving him or her in decisions and communication processes. Conclusions: Respect for autonomy requires that professionals and relatives are proactive and alert. They must carefully establish what needs are, and explore ways to involve patients with ID in end-of-life decisions. They have to communicate with the patient in such a way that (s)he feels safe to be receptive for information. This also implies that relatives and professionals are alert to signs of whether care decisions are either undermining or constructive for the autonomy of the person with ID. (aut. ref.)