Medical Decision Making
Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: A national survey of the considerations and beliefs of GPs, ID physicians and care staff

https://doi.org/10.1016/j.pec.2014.05.014Get rights and content

Highlights

  • Professionals believe that considerations about quality of life are most important.

  • Quality of life and wellbeing are frequently taken into account in decisions about medical interventions.

  • Seventy percent believe that people with ID should always be informed about interventions.

  • Family's wishes are explicitly considered more often than the wishes of the person with ID.

Abstract

Objective

This paper explores the personal beliefs and specific considerations of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with intellectual disabilities (ID).

Methods

A survey questionnaire covering decision making about potentially burdensome medical interventions was sent to nationally representative samples of 294 ID care staff-members, 273 ID physicians and 1000 GPs.

Results

Professionals predominantly believed that considerations about quality of life are most important. Quality of life and wellbeing were also frequently considered in both decisions to start/continue an intervention and decisions to forgo/withdraw an intervention. Seventy percent believed that people with ID should always be informed about interventions, and 61% would respect a refusal by the person. The family's wishes were explicitly considered more often than the wishes of the person with ID.

Conclusion

Although respondents agree that the quality of life is highly important, the wishes of people with ID (especially of those with severe/profound ID) were often not considered in decisions about potentially burdensome medical interventions.

Practice implications

To enhance the active involvement of people with ID in decision making we recommend that professionals integrate collaborative principles in decision making and make use of pictorial and easy reading resources.

Introduction

End-of-life care is the total care that aims to maintain the best possible quality of life until death. According to the WHO [1], end-of-life care provides relief from pain and other distressing symptoms, and may start early in the course of a life-threatening illness. The focus on quality of life has consequences for choice of medical interventions [2], [3], [4]. Medical interventions can improve wellbeing but may also be quite burdensome for somebody with a life-threatening illness. Decisions about whether to use or forgo medical interventions are therefore of paramount importance. These decisions may be especially difficult when it comes to people with intellectual disabilities (ID).This article presents a study of the beliefs and considerations that influence such decisions.

There are several reasons why decision making about medical interventions at the end of life can be more difficult in the case of people with ID. First, it may take more time before palliative care needs are recognised. A study in the UK showed that people with ID had more delays in the diagnosis and treatment of their final illness and received less opioid analgesia than a group without ID [5]. Second, many people with ID do not fully understand the reasons, impact and consequences of medical interventions. Communication about medical interventions and assessing their wishes and needs is often difficult [6], [7], [8], [9]. Heslop et al. [5] found almost no documentation on what people with ID understood about their condition and medical interventions. Similarly, Wagemans et al. [10] found no evidence in medical files that people with ID were involved in end-of-life decision making. Not understanding their illness and intervention options can lead to considerable distress in people with ID [7]. Third, determining the wellbeing of people is an important element in end-of-life care. The identification and management of pain and other symptoms can be complicated in people with ID, as signals that express pain or distress are hard to recognise [11], [12], [13]. Difficulties in determining wellbeing may lead professionals to rely on biased presumptions about a person's needs and values [14], [15].

So far, most studies addressing medical interventions in the end-of-life care of people with ID have either been case descriptions [14], [15] or have focused specifically on decisions with a possible life-shortening effect [16], [17]. Yet many medical intervention may be potentially burdensome for people with ID who need end-of-life care due to their limited level of understanding and communication difficulties. As far as we know, these decisions have not been explored. Neither do we know whether decisions to start an intervention are based on different considerations than decisions to forgo an intervention. To enhance well-considered decision making, we need insight into the beliefs and actual considerations of professionals in such situations. The research questions are:

  • 1.

    What considerations do the professionals concerned take into account in actual decision making about the use of potentially burdensome medical interventions? Are decisions to start or continue a medical intervention based on different considerations than decisions to withdraw or forgo a medical intervention?

  • 2.

    What beliefs do professionals have with regard to the use of potentially burdensome medical interventions in the end-of-life care for people with ID? Do care staff, ID physicians and GPs differ in these beliefs?

Section snippets

Research subjects

A pre-structured questionnaire was sent to three groups of professionals:

  • (1)

    Care staff employed by care services for people with ID, recruited from an existing national research panel of care professionals in the Netherlands [18], [19]. This research panel consists of a national sample of registered nurses, certified nursing assistants and social workers who are prepared to fill in questionnaires on current topics in health care. All panel members who worked in ID care services (a total of 294

Background of the respondents

The overall response rate was 46% with 718 questionnaires being completed. The response rate among care staff was 67% (n = 196), among ID physicians 53% (n = 145) and among GPs 38% (n = 377). The group of care staff (n = 196) was comprised of 85 registered nurses, 8 certified nursing assistants and 103 social workers. All responding GPs (377) had patients with ID in their practice and 107 (28% of the 377 GPs) filled in the questions on end-of-life care. The responding ID physicians had on average less

Discussion

This study explored actual considerations and personal beliefs of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with ID.

Regarding actual considerations, the study shows that decisions about potentially burdensome medical interventions are often made in the end-of-life care of people with ID. Most of the decisions described in our study resulted in the rejection or withdrawal of a potentially burdensome medical

Acknowledgment

The study was funded by ZonMw, the Netherlands Organization for Health Research and Development.

References (30)

  • I. Tuffrey-Wijne et al.

    People with learning disabilities who have cancer: an ethnographic study

    Br J Gen Pract

    (2009)
  • G.L. Stein

    Providing palliative care to people with intellectual disabilities: services, staff knowledge, and challenges

    J Palliat Med

    (2008)
  • G. Lohiya et al.

    End-of-life care for a man with developmental disabilities

    J Am Board Fam Pract

    (2003)
  • A. Wagemans et al.

    End-of-life decisions: an important theme in the care for people with intellectual disabilities

    J Intellect Disabil Res

    (2010)
  • N. Bekkema et al.

    Palliatieve zorg voor mensen met een verstandelijke beperking

    (2011)
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