Dying with dignity: let's focus more on the latter

Dying with dignity: let's focus more on the latterBy Stella Young. First published on the ABC's Ramp Up website 

The medical industrial complex has an inaccurate, but incredibly powerful, view on my life.

Disability is often framed, in medical terms, as a disaster, so you can forgive my reluctance to grant doctors even more control over my life (and death), writes Stella Young.

About five years ago I found myself in the small holding bay of a hospital operating theatre. Swimming in my enormous white gown and little paper hairnet, I was about to be anaesthetised for a fairly uncomplicated procedure on my right arm. No matter how accustomed you are to it, surgery is never a pleasant thing, and so I was nervous.

I'm not sure whether it was the ill fittingness of my cap and gown or simply the fact no-one had told the anaesthetic nurse that I'm a physically disabled woman that induced the look of shock, but the nurse's eyes widened and she let out an audible gasp when she saw me.

Having lived in this body my entire life, I'm entirely used to this reaction, and immediately tried to disarm her with friendly banter.

Unfortunately, she wouldn't be disarmed. She continued to register shock and awe as I nervously chatted about my work. I began to get annoyed as the overt tone of condescension and amusement failed to creep out of her voice. This happens sometimes. People are uncomfortable about disability and so interactions can become unintentionally uncomfortable.

Lying down, with an IV inserted into my arm, she asked my birth date to cross check it with my ID bracelets and chart. "So you're 27?" she said. "You're doing very well then, aren't you?!" she exclaimed, as she injected a sedative into my IV and I began to feel sleepy.

I can still recall the stab of panic I felt, suddenly mixed in with my drowsiness. The realisation that there were people in charge of my care who thought, subconsciously or otherwise, that I'd already had "a good innings". The suspicion that perhaps they wouldn't be quite as careful with me as they might be with a non-disabled patient.

I am fully aware that my reaction to this experience looks a lot like paranoia. But as someone who has had more than their fair share of contact with the medical profession over the years, I can assure you that this experience was not an isolated one for me.

And so when people ask me why I am opposed to legalising assisted suicide, this is what I tell them: The medical industrial complex has an inaccurate, but incredibly powerful, view on my life. Disability is often framed, in medical terms, as the ultimate disaster and certainly as a deficit.

Indeed, some of my most profound experiences of ableism have taken place in the context of a hostile hospital environment. Hospitals are not always places of healing.

The recent case of Brittany Maynard, a 29-year-old woman with an inoperable brain tumour who chose to end her life via assisted suicide, has us talking about "dying with dignity" once more. She chose very deliberately, and with the backing of "end-of-life advocacy" organisation Compassion and Choices, to make her death a public advocacy tool.

Maynard's case is indisputably tragic and the media have fed it to us eagerly. Ironically, it's the same media that loves a good "against the odds" story. Headlines like "I was given 6 months to live and that was 15 years ago" are relished as we celebrate those who've outlived a grim diagnosis.

More than likely, these stories result from misdiagnosis rather than miracle. And of course, no-one mentions the fact that if assisted suicide were legalised, such misdiagnoses could prove fatal.

In Oregon, where Brittany Maynard died, and assisted suicide has been legal for a decade, people using the Dying with Dignity Act have generally done so not because of concerns about pain, or pain control, but instead because of concerns about losing autonomy and dignity. These concerns would appear to have more to do with disability than they do with dying. Avoidance of pain and suffering actually ranked quite low on the list of reasons people were using the legislation.

In a state like Oregon, where a stretched health system appears to favour profit over people, there are also costs to consider.

Barbara Wagner, a 64-year-old Oregon woman diagnosed with terminal lung cancer, received a letter from her health insurance company saying that they were unable to pay for the chemotherapy she needed to treat her cancer, but they would cover the cost of physician-assisted death. The same thing happened to Randy Stroup and presumably many others. In a health system stretched and cost-focussed, people are supported to die, but not to live.

Death is not treatment, even if it's medically facilitated.

Brittany Maynard was, by all accounts, entirely in control of her life-ending decision. But creating public policy based on individual cases is dangerous. We have a responsibility to ensure that vigorous safeguards are in place to protect the vulnerable and at risk.

I'm a white, middle-class, educated, informed woman who would likely be able to engage in end-of-life discussions as articulately and clearly as Maynard. But I am loathe to give doctors any more control over my life than they already have. In a context where disability is viewed as deficit, it's important that we do not lump disability and terminal illness into the same basket.

Doctors are not fortune tellers and neither am I. Having lived with disability since birth does not afford me immunity from illness. Of course, when the time comes, I would like a dignified death. But while I'm alive, I also want a medical profession that is just as willing to keep me alive as they are to assist me to die.

Conversations about dying with dignity are important. But we must first ensure we're all able to live with dignity.

Stella Young is a comedian, television presenter, disability advocate and was formerly editor of ABC's Ramp Up website.

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