Attitudinal barriers to the system: How does disability shape palliative care?
The negative assumptions or biases about disability that many people hold in our society make viewing or treating disabled people differently seem acceptable. According to Stienstra and Chochinov, "People with disabilities are usually portrayed as "abnormal" and in need of special accommodation, as opposed to being seen as individuals whose lives depict part of the full and broad spectrum of diversity amongst human beings." Stienstra and Chochinov argue that "The assumptions we hold towards certain populations or perceived afflictions can result in profound disparities in the availability of various health care options…and ever narrowing health care options." 34
Some of the assumptions VP-Net participants have discussed include:
- People with disabilities in medical crisis are ‘hopeless cases’;
- People with disabilities do not lead full and valuable lives;
- People with disabilities are dependent on the assistive or medical devices that they sometimes employ;
- Assistive devices are ‘extraordinary measures’.
These assumptions become really important when there is a conflict between the opinions of the healthcare worker and the person with a disability in end of life care.
There is a power inequality built into the medical system, which does not value or recognize the lives, experiences and knowledge of people with disabilities and gives the authority to healthcare workers to decide for people what their best interests are. When this is combined with a long history of struggling to gain control over their lives, people with disabilities "have more to lose than most people when we enter dominating systems."35
This power inequality between healthcare workers and people with disabilities means that the values of the healthcare workers often override those of patients who are then not able to assert their own wishes or be listened to. As a result, in the current health care system, it is far easier for people with disabilities to refuse treatment or be denied treatment than to get the treatment they want or need.36
Some people with disabilities who experience prejudice and feel their experiences are not understood or considered will choose to stay outside the healthcare system. People with pre-existing disabilities fear their lives will be cut short because the system will decide it is futile to continue their treatment; some choose to have no healthcare rather than experience the rejection of being denied healthcare. People who are deemed non-competent to make decisions about continuing or withholding/withdrawing treatment may also be left out of even little decisions about day-to-day preferences.
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