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Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID)., Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33)., Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP., Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians., Methods: This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures., Results: The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians., Conclusion: The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making., (© 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: Not much is known about the process of end-of-life decision-making for people with intellectual disabilities., Aim: To clarify the process of end-of-life decision-making for people with intellectual disabilities from the perspective of patient representatives., Design: A qualitative study based on semi-structured interviews, recorded digitally and transcribed verbatim. Data were analysed using Grounded Theory procedures., Participants: We interviewed 16 patient representatives after the deaths of 10 people with intellectual disabilities in the Netherlands., Results: The core category 'Deciding for someone else' describes the context in which patient representatives took end-of-life decisions. The patient representatives felt highly responsible for the outcomes. They had not involved the patients in the end-of-life decision-making process, nor any professionals other than the doctor. The categories of 'Motives' and 'Support' were connected to the core category of 'Deciding for someone else'. 'Motives' refers to the patient representatives' ideas about quality of life, prevention from suffering, patients who cannot understand the burden of interventions and emotional reasons reported by patient representatives. 'Support' refers to the support that patient representatives wanted the doctors to give to them in the decision-making process., Conclusions: From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.

Background: The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians., Methods: This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with ID that involved end-of-life decisions. The interviews were transcribed verbatim and analysed using Grounded Theory procedures., Results: Four main contributory factors to the physicians decision-making process were identified, three of which are related to the importance of relatives' wishes and opinions: (1) Involving relatives in decision-making. As they had assessed their patients as lacking capacity, the physicians gave very great weight to the opinions and wishes of the relatives and tended to follow these wishes. (2) Delegating quality of life assessments to relatives. Physicians justified their end-of-life decisions based on their medical assessment, but left the assessment of the patients' quality of life to relatives, despite having their own implicit opinion about quality of life. (3) Good working relationships. Physicians sought consensus with relatives and paid care staff, often giving greater weight to the importance of good working relationships than to their own assessment of the patient's best interest. (4) Knowledge of the patient's vulnerabilities. Physicians used their intimate, long-standing knowledge of the patient's fragile health., Conclusions: In order to take a more balanced decision, physicians should seek possibilities to involve patients with ID themselves and other stakeholders which are important for the patients. Physicians who have known the patient over time should rely more on their own knowledge of the patient's needs and preferences, seek the input of others, and openly take the lead in the decision-making process., (© 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.)

Background: Since the 1990s, individualisation, participation, normalisation and inclusion have been the main principles of care for people with intellectual disability (ID). Autonomy has become an important issue for these people. This review of the literature tried to answer the question: how do people with ID exercise autonomy in relation to health?, Method: Searches in Cochrane, Medline and PsycINFO were based on the following aspects of autonomy: self-determination, independence, self-regulation and self-realisation., Results: Thirty-nine of 791 articles met our criteria, including 14 on self-determination, seven on independence, 15 on self-regulation and three on self-realisation., Conclusions: In spite of decades of promoting autonomy, the exercise of autonomy in relation to health has so far rarely been an issue in the literature.

Background: Since the 1990s, people with intellectual disability (ID) in the Netherlands have been moving from institutions to supported accommodation in the community. The Government is in need of recent data on the numbers of these people, to ensure adequate care provision and funding. This paper reports on the prevalence of people with ID in the Netherlands. The research question was: what is the lowest and highest estimation of prevalence of people with ID in the Netherlands?, Methods: Two extrapolation methods were used, each consisting of a number of stages, using general practice databases and ID care services records., Results: The prevalence of people with ID in the Netherlands was 0.7% (111,750 persons). Other assumptions yielded 0.54-0.64%. Arguments for the two extrapolation methods and the lowest and highest estimation of prevalence are discussed., Conclusions: Compared with 1988, there has been a slight decrease in the prevalence of people with ID in the Netherlands, even though we included all age groups and even people with ID of who were not included in ID care services records. By using general practitioner databases it was possible to identify these not registered people with ID.

Background: Current changes in care philosophy and diversity in care arrangements caused the need for a new estimate of the number of people with intellectual disability (ID), based on recent data. Previous estimates were based on client registrations, which was thought unreliable at this time. This manuscript studies the question how many people with ID can be found in (part of) the Netherlands., Methods: Identification of people with ID through a combination of general practice (GP) data bases and service registrations in the province of Limburg., Results: The prevalence of people with ID appeared to be between 0.64% and 0.70%. About 0.21-0.27% were living with family or on their own; 55% of them did not use common ID services., Conclusion: Results are based on a combination of identification methods. Thirteen per cent of uncertain cases led to minimum and maximum estimates of the population. Limitations of the method and alternative ways of data collection are discussed.

In a GP database, 318 people with intellectual disability (ID) appeared to have 2.5 times more health problems than people without ID. This short report deals with the nature of the health problems. Consequences for health care policy are discussed.

In a general practice database containing data on 62,000 patients, those with intellectual disability (ID) were traced. Health problems in this database were recorded according to the International Classification of Health Problems in Primary Care (ICPC) code. By using selected codes, 318 people with ID (0.65% of the study population) were found; the sample contained nearly as many false positives. Adding up the percentage of people with ID living in residential facilities, the total prevalence of people with ID was estimated as 0.82%. Documentation on the cause and level of ID was available in about half of the cases. The demographic characteristics of the people with ID were significantly different from the general population: there was a higher percentage of males and a lower percentage of people over 50 years of age among those with ID. Information about the use of home care was virtually non-existent in the general practice data. The results are compared with those of other studies. The discussion deals with reasons for complete documentation of cases with ID in general practice and the role of the general practitioner in health care supply to people with ID.

Little is known about the involvement of nurses in the process of making end-of-life decisions for people with intellectual disability (ID). The aim of this study was to clarify this process from the perspective of nurses. This qualitative study involved nine semistructured interviews with nurses working in chronic care, conducted after the deaths of patients with ID in the Netherlands. The interviews were transcribed verbatim and analyzed using Grounded Theory procedures. The core characteristic of the position of the nurses and of the way they supported the patient was 'Being at the center of communication.' Related categories of topics emerging from the interviews were 'Having a complete picture of the patient,' 'Balancing involvement and distance,' 'Confidence in one's own opinion,' and 'Knowledge about one's own responsibility,' all of which were focused on the patient. This focus on the patient with ID might explain why the nurses could make valuable contributions to such an important subject as end-of-life decisions. People with ID themselves were not involved in the decisions. The nurses were not always aware who was ultimately responsible for the end-of-life decisions. Nurses are in a unique position to support the process of end-of-life decision-making. It is important to use their knowledge and give them a more prominent position in this decision-making process. It should be clear to all involved who is ultimately responsible for making the end-of-life decisions. [ABSTRACT FROM AUTHOR]

Reported here are the preliminary results of the second Dutch National Survey of General Practice in which data were collected on all contacts with general practitioners (GPs) during a 12-month period to determine characteristics of patients with intellectual disabilities (ID). Sociodemographic characteristics differed significantly between people with ID and controls, indicating significant differences in morbidity between the two groups (people with ID were found to have more psychological problems, more digestive problems, more ear problems, more neurological problems, and more general and unspecified problems). [ABSTRACT FROM AUTHOR]