End of life care

7 Apr

When this abstract came up it really got me wondering. We hear quite often parents say, “what will happen when I’m gone”. Well, one of the the things that will happen, someday, is that our kids will themselves pass on. I have to say, this is a subject I’ve avoiding considering. The abstract below is for Flemish residential care facilities, but I don’t know how, say, the California Department of Developmental Services handles end of life care. I have the right to sign an advanced directive stating whether I want extraordinary measures used to keep me alive. I have the right to refuse care. I have the ability to refuse care if I feel that my quality of life is not benefited. Will my child have these rights? I don’t want to think about these things. But if I don’t, who will?

J Intellect Disabil Res. 2010 Dec;54(12):1067-77. doi: 10.1111/j.1365-2788.2010.01335.x. Epub 2010 Nov 11.
End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities.
D’Haene I, Pasman HR, Deliens L, Bilsen J, Mortier F, Vander Stichele R.
Ghent University, Heymans Institute of Pharmacology, Gent, Belgium.
OBJECTIVE: This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end-of-life care.

METHODS: A cross-sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end-of-life care policy documents for content analysis.

RESULTS: Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end-of-life decisions with a possible life-shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life-prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end-of-life decisions with a possible life-shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end-of-life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end-of-life care while one-third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments.

CONCLUSIONS: The presence of end-of-life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.

One Response to “End of life care”

  1. vmgillen April 7, 2011 at 19:37 #

    First-person report from New York State: notwithstanding the recently-passed Family Health Care Decisions Act (FHCDA), notwithstanding Legal guardianship, people with developmental disabilities get to go through a last round of bs with professionals and government… Some background: Guardianship is deemed a critical aspect of transition planning, in part because of medical decision making on behalf of a person who may be incapable of comprehending options and/or making their wishes known. The majority of guardians are close relatives: parents, siblings… The FHCDA applies to person incapable of comprehending options or making their decisions known, and has a hierarchy of relatedness: spouse, parents, siblings. THE FIRST LINE OF THE FHCDA states the Act does not apply to persons with Developmental Disabilities. It also instructs that a committee be empanelled to review the exception. The act was passed more than a year ago, nothing is being done to address this discriminatory exclusion.
    My experience, as mother: watching my daughter, in less than a week, lose one of her legs, go into total organ failure… acute sepsis; it was awful. After deciding to remove the life support, we discovered that because she had a developmental disability we had to contact the Commissioner of (OPWDD) 48 hours in advance, have a psychological test (?!) report from attending medical (that makes sense) and supporting statement by a social worker. Last chance to jump through those administrative hoops and generate billings… God.
    This exclusion was put in before the bill passed at the request of emotional parents who feared Agencies would elect to murder their charges, without considering that the FHCDA has nothing to do with agencies… end result is the appearance that relatives of people with DDs are more likely to make irresponsible life ending decisions than, say, relatives of an incapacitated person with a long term illness (non-dd), or relatives of incapacitated wealthy individuals, or…
    This is a violation of Title II, but it doesn’t warrent attention. At the time, “political turmoil with the up-coming elections,” now it’s “politcal turmoil due to economic crisis”

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