Assisted Death and Mental Health – An Unnamed Woman’s Story

The Dutch Euthanasia Commission recently revealed that last year, in the Netherlands, an unnamed woman was granted a death by euthanasia because of suffering brought on by a mental health condition. For people outside the Netherlands, where the debate about assisted death for people with mental conditions is just beginning, it’s a controversial story.

Content Warning: Suicide, sexual abuse, assisted suicide, euthanasia

Yellow caution tape against a black background. Keyword: assisted death

Image Description: Yellow caution tape against a black background.

***

The young lady in question was 22 years old. She’d been sexually abused from age 5 to 15. Metro UK reports that she had “Post Traumatic Stress Disorder, chronic depression and severe anorexia” and “hallucinations and compulsions.”

Doctors declared her mental health conditions “incurable”, and the suffering that they caused her “unbearable”, and on this basis she was granted the right to the death by euthanasia that she requested.

There’s a lot to unpack here. I understand why, in light of what we know about this young woman’s condition, suicide looked like an option for her. I don’t understand why she was granted an assisted death and I’m not sure that I agree, based on the information that I’ve been able to find, that she should have gotten one.

“Assisted Death”, “Assisted Suicide”, and “Euthanasia”

Let’s get a matter of terminology out of the way. I will use “assisted death” in my discussion in this piece because while we tend to use “assisted suicide” as a catch-all for several types of death in which a doctor is involved, in the Netherlands “assisted death” has a particular meaning and isn’t interchangeable with “euthanasia”.  In Dutch law, a physician prepares a lethal injection for an “assisted suicide” but does not administer it.  The physician administers the injection during “euthanasia”. Media sources are quite clear that that this young woman was euthanized.  I think it’s important, for clarity, to use a third term to speak generally about the assisted death debate…on the one hand.

On the other hand, for the purposes of this discussion, the distinction doesn’t really matter: the fact that any kind of assisted death was approved for a chronic psychiatric condition is dicey even in the Netherlands. It requires evaluation by two specialists, one of whom must be a psychiatrist, and both of whom must agree that the applicant is “incurable” and experiencing “unbearable suffering.” Dutch doctors are somewhat reluctant to make these declarations about mental conditions. (Pg 14)

So there’s *that*.

Thoughts on Suicide Generally and Assisted Death Particularly

I don’t like the idea of people committing suicide, of course, but, bodily autonomy – you have a right to do what you want to your body, regardless of how I feel about it. I’ve been suicidal. I don’t think that I truly wanted to die, just as I think that most people considering suicide don’t truly want to die. I think that they’re people in tremendous pain that want it to stop and that suicide sometimes looks like the only option. That’s part of what makes suicide so sad – if you take that option, not aware that there are there are others or that you can access others, or lacking confidence in the efficacy of other options or your ability to use them effectively, or simply to worn out to give a damn, you can’t change your mind.

But I also think that there’s a very small number of people who have truly decided that they want to die, who have thought it through with a clear head and who fully understand the consequences, and whose unclouded reasoning shows when evaluated by professionals. They want a dignified death that’s under their control, perhaps with loved ones around them, where they don’t have worry about something going wrong and traumatizing loved ones being beyond the grief of the death itself. I can respect that. I support that. I think that there needs to be safeguards around the right to access it, but I think that the access should be there.

People who request an assisted death are generally terminally ill, but not always.

They don’t have to be in the Netherlands.

They won’t have to be in Canada, if the legislation proposed in 2015 is passed as presented.

This woman wasn’t, although she may have died eventually if she’d not found a way to manage her anorexia.

Cause for Caution

There are good reasons to consider assisted death legislation that doesn’t have terminal illness as a criteria, but these are good reasons to  approach it cautiously, too.  Three major concerns come out of this story for me:

  1. Granting assisted death on these declarations sets a dangerous precedent, not just for people with mental conditions, but for disabled people in general. Many  disabled people are (rightfully) concerned about assisted death legislation and the potential for people to make assisted death decisions of behalf of disabled people based on perceptions of what living as a disabled person must be like. What if this young woman had not sought an assisted death, but had ended up in the hospital because of the anorexia, and doctors had deemed her “incurable” and her suffering “unbearable” and put a DNR on her? It wouldn’t be the first time a disabled person had a DNR put in them without their consent in a hospital.
  2. I was an emotional mess to varying degrees until my early twenties. When I finally got on the right meds, and with good therapy on a regular basis, things started to turn around, even as I was adjusting to the major life changes brought on by my surgery and stroke – I’m uncomfortable with doctors throwing around the word “incurable” for a 22-year-old, especially since she’d experienced temporary improvement with intensive therapy. And I’m not a certified counselor, but I know women and men who experienced long-term sexual abuse in childhood. After a lot of therapy and hard work they haven’t forgotten, but are able to live with it as they go about their full, fulfilling lives. What a tragedy if, still in the thick of it at the young age of 22, they’d asked for an assisted death and a doctor had deemed them “incurable”!
  3. I was anorexic and severely depressed when I a teenager, and I remember my thought processes at the time. I couldn’t trust my perceptions on anything, not just because of the lens of  body dysmorphia and depression through which I viewed everything, but because my body was just so malnourished. I  can believe that this woman had convinced herself that she wanted to die and that she maybe even could have presented some cogent-sounding arguments in favour of giving her an assisted death. But do I believe that someone with  active PTSD, severe anorexia, depression, compulsions, and hallucinations was able to look clearly and objectively about whether she truly wanted to die? I wasn’t there, I didn’t talk to her, I’m not a doctor. I’m not saying she couldn’t. But I think that it’s reasonable to question whether she really could.

However.

When Treatment Doesn’t Work

Again, I didn’t know this girl. I don’t know what she went through in those 10 years. I don’t know what kind of work she did to get better since the abuse ended. Maybe she tried every kind of therapy she could get her hands on, and nothing made any lasting difference.

I do know that for some people, medications and therapy don’t work for depression. They try drug after drug, and they keep trying new therapists, trying to find one that they click with, and some even try electroshock therapy, and nothing makes a difference. I imagine myself at my worse, depression-wise, trying everything that I can, and feeling more and more discouraged when nothing seems to work…that would literally be hell on earth. Add PTSD to that, and the physical problems that anorexia causes, and I get it. I get what she’d ask for something drastic.  I won’t – I can’t – judge her asking.

Again, Caution

But the fact that she was deemed “incurable” at a very young 22 years when there still could have been so much about her state of mind influencing that decision and she *had* shown some improvement relatively recently makes me think that it was too early to give her what she wanted. And it’s cemented for me the vague feeling of discomfort that I’ve had around the legislation in Canada’s assisted death law, that allows people to make a request based on mental health conditions.

I’m not well when I’m deeply depressed. I can’t trust what my brain is telling me about my life. I need laws (and people that work with them) that work as much as possible with my survival instincts in those times, not against them.

To be clear: I am not suggesting that people with mental conditions lack the capability or capacity to make important life decisions, even when feeling very unwell. That is simply untrue. Each case is individual, and I can only speak for myself. I am just calling for caution. When it comes to assisted death, we need to proceed with caution, and make sure that everyone who needs protection is protected – including the people that may need protection from themselves.

Save

Lily Parra Needs a New Heart

Here’s a familiar story. Four-month-old Lily Parra won’t be put on the transplant list for the heart she needs because of disability. Long-time readers may remember that I’ve written about two similar stories: Children’s Hospital of Philedelphia’s refusal (eventually reversed, after a long fight) to perform Amelia Rivera’s kidney transplant because of her intellectual disability, and the Hospital of the University of Pennsylvania’s refusal to put Paul Corby on the transplant list for a heart because of concerns stemming from him being autistic.

Content Note: Ableism, Child Illness, Organ Transplant, Medical Model of Disability

Dr's prescription pad with "Heart Transplant" written on it. Keyword: Lily Parra

Image Description: Dr’s prescription pad with “Heart Transplant” written on it

***

Stephanie Parra was 32 weeks pregnant when doctors informed her about Lily Parra’s heart defect and how it meant that she probably wouldn’t live long past birth. They suggested that Stephanie have an abortion, but she refused.  Lily Parra was born on December 8th, 2015 and went home a month later, after surgery to have 2 stents put in her heart. Her parents took her back to the hospital a week later because of concerns that she was having a seizure. Doctors quickly saw that she was in respiratory distress, and  determined that she’d picked up a bacterial infection from being in the NICU that had settled in her lungs. After an echocardiogram also showed that Lily had mitral valve regurgitation in addition to her other heart problems, doctors determined that she needed to be put on the transplant list.

Read more about Lily Parra’s health problems

However, an MRI showed that Lily Parra had water on the brain, causing a condition called diffuse cerebral dysfunction that might result in developmental disability. Stephanie Parra says that she was told by doctors generally that “because of this diagnosis, her daughter would have a poor quality of life and therefore, they would not list her for a heart transplant” and by Dr. Shamel Abd-Allah specifically that “I don’t have a bag full of hearts that I can give to everybody and I’m not going to waste a heart on a kid who might have disabilities.

A letter from Loma Linda University Children’s Hospital posted on the online petition that Stephanie Parra has started states Lilly Parra isn’t being considered for a transplant because chromosomal abnormalities that will affect longevity. Stephanie says that she only heard about this when she heard doctors and nurses in the PICU discussing how Lily Parra was missing genetic material on chromosome 2p21. Individuals with this deletion are usually developmentally disabled.

I Get It

Donated organs are in short supply and tough decisions need to be made about how they’re allocated. Doctors should be reasonably assured that recipients are committed to caring for themselves and the organ that they’ve received – taking the anti-rejection medications, following up with doctors, and staying in good health to the greatest extent possible.

I get bringing up some disabilities as a consideration when evaluating people for transplant. If I needed a transplant, I would get it if doctors asked me questions like:

When you’re depressed –

  • Do you realize that you’re depressed?
  • How well do you take care of yourself?
  • Do you ever stop taking your medications?
  • Do you have a plan that you put in place to help you get back to baseline again?
  • How likely are you to put that plan in place by yourself? What kind of help do you need to get it going?
  • How long does it take you to get it going?

If I indicate that every couple of years I get so depressed that it’s hard for me to get out of bed and to work and my appointments, and that I stop taking all my medications, I imagine that this would be concern for a transplant team.

I think is fair it’s that disabilities with the potential to affect how well a transplant recipient  adheres to the regimen that will endure the success of the transplant be a concern in the evaluation for the recipient’s suitability for a transplant.

However…

Disability on its own shouldn’t dictate whether a person is excluded from transplant (especially very young children). Lily Parra may very well end up developmentally disabled. The reality is that we can’t know the extent of her disability at this point, and that, just as it would be fairly easy for me to put a plan in place with support from others that ensured I was taking my anti-rejection meds and seeing my doctors even when depressed, Lily Parra can have supports put in place around her as well, if needed, to ensure that she cares for herself as an organ recipient.

I worked with an intellectually disabled woman who never forgot to take her meds. She’d tell me, “I need to take my meds now.”

It’s not fair to decide when a baby is four months old that he or she will not be able to live with the demands of being an organ recipient, even if developmental disability is involved.

Lily Parra – Deeper Issues

Doctors want people who have the best chance of high “quality of life” to receive donated organs, but their conception of “quality of life” is often narrow and ableist. If doctors can’t imagine a recipient getting a typical education and ultimately contributing to society through paid work, family, community roles, etc., then they assume that donated organs would be better off with individuals who can do these things in the stereotypical ways that they envision.

This bias toward the stereotypical “normal life” (and emphasis on how potentially “functional” in society a person is as a criteria for being being an organ recipient), is highly ableist. It’s perfectly possible to have high quality of life while having significant disabilities, and almost certain that quality of life would be even higher without the physical and attitudinal barriers blocking disabled peoples’ full access to society. The view that disability is something that’s in the individual and needs to be cured is so prominent within the medical community that it’s actually called the medical model of disability, and its refusal to acknowledge that disability is a social creation (the social model of disability) doesn’t leave any room for the idea biology doesn’t predict destiny.

Again, especially when a potential organ recipient is very young, it’s terribly unfair to totally base a decision about whether or not someone gets organ on, “Disability always comes with low quality of life.” We should not be making decisions transplants based on whether we think a recipient could or couldn’t reach the quality of life that we’d consider acceptable because:

  1. What doctors consider a good quality of life may not be what the recipient considers a good quality of life.
  2. An individual generally should not be able to dictate what a good quality of life is for someone else.
  3. As much as I respect doctors and clinicians and their abilities, they are frequently wrong about what disabled people end up being able to do. My doctor at my first stroke rehab centre didn’t think that I’d ever really be able to move my left arm again. I have considerable movement in my left arm and am still getting return in my left hand after 15 years.

I Also Realize…

…that we don’t have the full story from Loma Linda University Children’s Hospital. Garrett Caldwell, Executive Director for Public Affairs at Loma Linda, wrote a letter in response to Special Olympics Chairman Timothy Shriver’s op-ed about Lily Parra in the Washington Post, but it was very general (as responses usually are). There are aspects of the story that don’t make sense – like why the Parras were not told about the 2p21 deletion, and why one doctor told them that Lily Parra was in kidney failure and another then said that she wasn’t. It’s totally understandable that parents under extreme stress might misunderstand information or might not remember something that was said to them. There may be other factors behind the decision to remove Lily Parra from the transplant list.

However, there’s enough consistency in Stephanie Parra’s story across media accounts to make me believe that it was said that Lily Parry would not receive the transplant because of a developmental disability or the potential for one, and this is not fair. It’s ableism that needs to be called out and that Loma Linda University Children’s Hospital needs to respond to.

I didn’t like most of Shriver’s op-ed, to be honest – I thought that he relied too much on emotion and not enough on fact to make his argument. But I do think he nailed it with this:

“This is an infuriatingly familiar story, and people with intellectual disabilities know it well. Too many medical professionals see them only in terms of “function” or “dysfunction.” The vast diversity of gifts and challenges that make up each of us are reduced to a binary conclusion. You’re either able or disabled, valuable or not. And when you’re not, you’re hopeless.”

Please sign Stephanie Parra’s petition to have the Transplant Board at Loma Linda University Children’s Hospital reconsider putting Lily Parra back on the transplant list.

Save

Save