Today, Thursday December 3rd, is the International Day of People with Disabilities.
In 2008, the United Nations adopted a Convention on the Rights of Persons with Disabilities (UN CRPD). In considering this Convention, and our approach to disability, what might this mean for the delivery of palliative care?
The Convention includes 50 Articles, and calls on governments around the world to work towards greater meaningful inclusion, participation and equality for people with disabilities, in all aspects of life. ‘Disability’ is identified as being the result of an interaction between a person’s impairments and the support (or lack of support) that enables or hinders their full and effective participation in society. Following from this, the UN CRPD advocates that people with disabilities have access to the supports they may require to achieve effective participation.
While increased attention to health promotion and lifestyle management has led to increased life expectancy for people with disabilities, the palliative care needs for this group are still not well understood. Palliative care has traditionally been designed to meet the needs of people with identifiable terminal illnesses, but is now beginning to develop responses aimed at meeting the end of life care needs for people with disabilities. These people may experience a range of symptoms towards the end of life, and can benefit from approaches aimed at maximising quality of life.
One key issue for people approaching end of life is establishing an approach to health care and medical treatment decision-making. For many people living with disabilities, and particularly those with cognitive impairment, this has traditionally been through substitute decision-makers, often a family member who has been in a long-term ‘carer’ role for the person. The UN CRPD advocates that governments transition away from substitute decision-making, and instead provide the support and resources needed by people with disabilities, so that they can participate in making meaningful decisions about their own lives.
Such an approach fits well with the rallying call of the disability sector “Nothing About Us Without Us”, and yields a number of interesting considerations that might inform a supportive (as opposed to a substituted) approach to decision-making. For a start, the typical assumptions about decisions being the province of a single individual, with autonomy that is independent of relationships or the prevailing social context, are problematic. Legal analysts have started to explore how autonomy might be reframed as a relational rather than an individual concept. This ‘supported decision-making’ approach has the laudable aim of “moving from me to we” in decision-making, and aligns with a number of existing care philosophies in the context of cognitive impairment. However that is not to say that it is unproblematic. Some have suggested that such an approach may raise issues relating to the accountability for decision-making, and even that it may lead to unintended negative consequences, such as providing an avenue for the abuse of people with disabilities, through ostensibly ‘supportive’ decision-making arrangements.
If supported decision-making can effectively promote autonomy for people with disabilities, then it seems highly likely that this approach will be of interest to those providing palliative care for these populations. Our current problem is that there is a severe lack of evidence to inform meaningful policy development in this area. I would argue that we firstly need to understand whether people with disabilities endorse this approach, and if so, the types of supports that they identify as being potentially helpful. Armed with this evidence, we may be better positioned to develop alternative approaches which support decision making. These can then be evaluated and, if successful, implemented more broadly.
If you are interested in further information, there are resources for understanding the palliative care needs of people with disabilities, available through CareSearch. Kate Swaffer has also written extensively and eloquently on her experience of living with a disability. I would urge anyone interested in the interface between rights, disability and quality of life to check out her blog.
Thanks Craig for your sober and informative look at this area. I agree that an understanding of the relational aspect of autonomy informs the practice of supported decision making, and that this developing area can potentially do a lot to support the inclusion and participation of persons with disabilities. The dovetailing of these ideas with person centred palliative care is notable and mutually reinforcing.
Recognising the voices (and the choices) of persons with disability of all kinds, including the disabilities of illness and ageing created by life-limiting illness such as dementia, is a necessary step for us as a society. Palliative care can and should be a vanguard of this progressive effort. But, your comment that we need to actually ask the opinions of persons with disability, being those most affected by any change in approach, is sage. To not do so is to assume that “we” know what is best, or worse that persons with disability have nothing to offer to the discussion. While change is required it must be backed by evidence that values the opinions of persons with disabilities, and seeks to understand their often unheard experience. To do otherwise is to fail at the first step.
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