Presentation of "Voices at Dying: Dying to be Heard" by Heidi Janz at the 16th International Congress on the Care of the Terminally Ill

VP-Net post-doctoral fellow and playwright, Heidi Janz, wrote and organized a dramatic presentation to highlight the issues surrounding palliative care for people with disabilities.  Using humour to engage the audience, she presented many of the players with a role in provision of quality end of life care to people with disabilities, including a government researcher, a palliative care physician, a person with a disability, and a person with a disability and a terminal illness.

The play touched on a number of themes discussed in the Institute. A major theme portrayed in the play was the lack of awareness and defensiveness amongst healthcare providers about why people with disabilities may feel vulnerable in end of life care. This was portrayed in the play when the doctor exclaimed "Sorry, but I’m really having trouble with all this talk about ablest biases and these implicit conspiracies to prematurely end the lives of individual with disabilities. You seem intent on painting us physicians as these diabolical villains based one or more than your own paranoias!"

Widespread assumptions about the quality of life of people with disabilities among health care providers and in the media; the lack of supports and assistive devices for people with disabilities who are dying, the basis on which scarce resources in healthcare are distributed; the lack of  accessibility in palliative care wings; a lack of appropriate training of staff in palliative care to support the needs of people with disabilities; and the conflation of palliative care with death hastening were all touched on in the play.

The tension involved in the struggle to advocate for better palliative care in the context of living until you die, was addressed when the female character with disabilities asked "who’s going to have the energy to do that kind of advocating for better access to palliative care, when once we’re at the point of needing it, all our energy is going to be taken up by just trying to live until we die?" The play also touched on the fear in the disability community that such advocacy will reinforce the perception of people with disabilities as sick or dying; as the female character with disabilities points out, "The mainstream media would just use it to reinforce the idea, in a lot of people’s minds, that disability is somehow automatically related to death."

Finally, the play portrayed hope for progress in building a dialogue between doctors in palliative care and people with disabilities, was portrayed as the doctor was eventually able to see problems with the system that make people with disabilities more vulnerable. Taking advantage of this new level of awareness among both the doctor and the characters with disabilities, the government researcher proposed focusing on small things the two sides have in common as solutions rather than focusing on problems. She suggested, "These solutions will be the basic building blocks for a bridge between the disability community and the medical community. Let’s imagine that each block is representative of a common goal that both groups can work towards."

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