… as I would be a “vegetable” if I did

By Stephen Drake

I was born in 1955. I developed hydrocephalus as a result of injury from forceps used in a breech delivery.  Right after I was born, I was whisked away by the medical team.  My parents didn’t get to see me or hear anything much about me for hours.  Finally, the doctor who delivered me and caused the injury told my parents it would be better if I didn’t survive as I would be a “vegetable” if I did.  Specifically, he told them that the odds were 100 to 1 against my living through the night.  If I did survive it would be worse, since the odds were a million to one against me not being a ‘vegetable.’ (The usual ‘won’t talk, won’t walk, be a burden’ description).  He suggested it would be best if ‘nature took its course,’ which would mean, I guess, doing nothing to treat me and ‘allowing’ me to die.

Luckily for me, my parents had other ideas.  Even though they swear they weren’t afraid the medical staff would give less than aggressive care, my father spent the entire first night of my life watching over me through the nursery window, along with the pediatrician they had already selected for my medical care.  By the next morning, I was much improved, my skin tone normalized from the grayish tone from the day before.  I regained movement on the side of my face that had previously been immobile (no one can remember which side and the medical records are lost in the dustbin of medical history).

Over the next two months, it was clear by my lethargy and head growth that I was developing hydrocephalus – an accumulation of spinal fluid in the brain.  When I was about three months old, I had a lumbar shunt implanted in the base of the spine to promote drainage of spinal fluid.  This worked well until I was three. At that point, it became obvious that intracranial pressure was building again. That was when I had the ventricular shunt put in. This never really worked very well. I got headaches 1 to 3 times a day – my parents had to relieve the pressure by massaging the shunt. That’s how we all lived until I was ten.

At that time, I developed a headache that lasted for two weeks – it turns out I had outgrown the shunt. Due to advances in the shunt technology, they did a replacement instead of a revision. I’ve had that shunt, with little trouble, ever since.

The reason the surgeon didn’t attempt to correct problems with the first shunt was the uncertainty that my situation could be improved with only one surgery.  He – and everyone else – was new at it.  He really didn’t know if he would improve things at all on one attempt or how many attempts it would take.  Further, each operation carried a significant chance of infection, which was the leading cause of death in shunted kids with hydrocephalus.

I grew up being taught that my survival and lack of intellectual disability (mostly, anyway) was a ‘miracle.’  As an adult and graduate student, I came to know better.  If there were any ‘miraculous’ parts to my story, it was that my parents rejected the physician’s suggestions that maybe I – and they – would be better off if I died.  I was also extremely lucky that there was one – and only one – neurosurgeon in town who knew how to implant shunts at just the time that I needed one.

There are two other things I came to understand as I got older as well.  First, the odds the doctor cited for my survival and recovery were almost certainly made up on the spot and were aimed at getting my parents to ‘accept’ my death as a good, if not clearly inevitable, thing.  Second, as I’ve learned from the stories of others, when a doctor uses the word ‘vegetable’ about a patient, they will certainly follow up with a discussion of warehousing or ‘disposal’ (by way of medical neglect).

Visit Steve’s Water on the Brain – and Lots on My Mind blog.

John Kelly, Director of Second Thoughts: People with Disabilities Opposing the Legalization of Assisted Suicide, gave the following testimoney March 6, 2012, at the Statehouse in Massachusetts in opposition to the 2012 state ballot question to legalize assisted suicide.

I … speak to the issue of self-determination, on which hinges the proponents’ argument for the law.

But the fact is that we already have self determination, as we can refuse any and all lifesaving treatment. Gone are the days of unnecessary invasive treatments. People can have an advance directive, they can choose someone to make decisions if they can’t. And you have the right to pain relief, all the way up to palliative sedation, which in effect lets you die in your sleep. For these reasons, the law is unnecessary.

This law restricts choice as it jeopardizes lives. Misdiagnosis has always impacted self-determination, but this law makes misdiagnosis fatal. In Oregon, Jeanette Hall requested prescribed suicide after receiving a terminal diagnosis with cancer. Her doctor persuaded her to try more treatment. 11 years after her diagnosis, her recent letter to the Globe urged us to avoid Oregon’s mistake.

Economic pressure already restricts patient choice, this law makes it a scandal. In Oregon, cancer patients Barbara Wagner and Randy Stroup were denied life extending treatment. The same rejection letter offered to cover $50 worth of barbiturates.. How long before we have similar cases here?

The law ignores social context and family pressures. The first doctor Oregonian Kate Cheney saw thought her daughter was coercing her. But no data gets gathered from doctors who say no, and there is no penalty for doctors to do not report. As in Kate Cheney’s case, it only takes one doctor to write the prescription. After her family put her in a nursing home for a week, Kate finally said yes the day she returned home. She was dead the same day.

The law allows an heir with a financial interest to be one of the two witnesses for the request, and takes no interest in what happens to the drugs when brought into the home. Elder abuse is already a huge problem in Massachusetts, let’s not compound it.

With assisted suicide, self-determination becomes a slogan, not a reality.

For more information about John Kelly and Second Thoughts in Massachusetts, go to www.second-thoughts.org.