Euthanasia in Oregon

David McDonald at DAWG Oregon (Disability Activists Work Group Oregon) had a friend named Tracey. He knew her for seven years and worked directly with her at a day program she attended for adults with developmental disabilities. David says she was "fiesty" and uncompromising, a loner, but a "tough chick."

Tracey was small. At age 44, she was just 4' 8" and 80 pounds in her wheelchair. She wasn't very communicative -- "non-verbal" is a more clinical term for it -- but as one of three caregivers for Tracey David spent five years working closely with her, helping her eat, changing her when needed, taking her for rides in his truck where they shared long one-sided verbal exchanges. David says she was quiet but had a big spirit. He knew her and called her friend.

In April of last year she was diagnosed with stage 3 colon cancer. David tells much of the story at his blog:

She had a profound developmental disability and was non-verbal. In order for critical health care decisions to be made on her behalf, she needed representatives who knew and cared about her to gather and interpret medical information and weigh all her options.

An Advocacy Team was assembled including myself, two other staff members from her day program (who knew her well), and her Individual Service Plan (ISP) team. This consisted of a management staff representative of the day program provider (who saw her a few times a year), the owner of her foster home (who supervised her direct caregiver) and a county case manager (who was assigned my friend a few months earlier, and didn’t know her). A close friend of the day program representative was brought on board to act as health care representative (who didn’t know my friend prior to her diagnosis).

That makes seven people, if I count correctly. David indicates that they got off to a fairly sensible start and yet:

We all met and decided that the case manager would look into what was covered under her health plan, the health care representative would get the medical record and a 2nd opinion. She committed to providing these documents to the team as soon as she got them. I said that I would look into treatment options. Without any of this being accomplished, other than the information I shared about diet and exercise being critical, she was placed in hospice about two weeks later.

What should have been a committee convening to manage Tracey's continuing health care during a critical time apparently became a select and fractured mini-ethics committee that determined Tracey's life wasn't worth saving. This decision wasn't initially made formally, it seems, but through the actions of a few or even through the very act of creating the "Advocacy Team" to make decisions appear legitimate.

David says (italics mine):

From the beginning I insisted that in order to responsibly represent my friend in making decisions about her health care, we needed to see the medical record, the 2nd opinion, and make sure we all knew what her options were. The rest of the ISP team was more interested in allowing her to die without any medical “interference.” In fact, in early June, without access to any medical record, I was asked by the day program representative to sign a form that would indicate that I agreed to refusing treatment – I declined.

I complained of medical neglect for months while my friend received no treatment. While I was researching diet and exercise, part of the team enrolled her in hospice and cancelled her home health aide; the case manager claimed she had no idea how that happened. While I was complaining of a service plan that didn’t address supports for her condition, the case manager scheduled a meeting to discuss a burial plan.

David and another member of the Advocacy Team complained and were subsequently quietly excluded from future decision-making. The health care rep on the team took a 10-day vacation to Greece while Tracey waited in limbo with her medical records not even available for her team to read. David contacted Oregon's Protection and Advocacy agency for help on the day she was enroled in hospice. Instead of consulting the hospice program before a client is committed to it, Tracey's team consulted with hospice only after she'd been enrolled in the program for two weeks.

David's objections to this complete failure to address his friend's immediate medical needs resulted in him being labelled "disruptive" and "ancillary," and against Oregon laws about changing the advocacy team while critical care decisions are needed, attempts were made to kick him off the team. Lawyers got involved and communication became even more complicated.

Meanwhile, Tracey was bounced out of hospice in July because she was not "homebound." She'd been attending the day program all this time, riding the public lift to get there. Still, leaving hospice didn't mean actual treatment for her cancer.

David again (italics mine):

Finally, in early August, the medical record was made available by the Healthcare Rep. This was 4 months after her diagnosis and refusal of treatment by the other ISP team members. No 2nd opinion was included. What the Health Care Representative had been calling a 2nd opinion was an oncology consultation from a second doctor during the same hospital visit. I believe that no 2nd opinion was ever done. The doctor said that chemotherapy is the usual course of treatment and there were concerns about her communication and side effects. I discovered that the case manager and the day program representative had a meeting at the hospital with a social worker and decided then that she was incapable of chemotherapy. At the initial meeting back in early April, this was presented as a fact given to them by the doctors. I found that a hospice consultation was given, along with an in inaccurate reference to her being bed-bound and an opinion about her quality of life and disposition. There was no prognosis of 6 months as they had claimed. I also discovered that she had symptoms involving her intake and weight loss fifteen months earlier. In March an endoscopy had been recommended but wasn’t done.

Basically, other members of the team had made care decisions prior to the actual team's first meeting, and had represented those decisions to David and the rest of the team as doctors' advice. Inaccuracies about her abilities and life expectancy were stated, and then Tracey's quality of life was determined from that.

David and his wife tried to get guardianship of Tracey when it was clear that she was in danger of being given some random state guardian who did not know her, and David feared, would sign end-of-life documents like a DNR (do not resuscitate order). Tracey had had no treatment at all for her cancer, but David was not ready to give up:

I had also called protective services to report possible medical neglect, but was told they wouldn’t investigate as long as the Protection and Advocacy agency was already involved. I now feel that the one regrettable mistake I made through this whole thing was in contacting the Protection and Advocacy agency, believing that she needed a lawyer. They never gave a clear answer as to whether or not they would even represent her. In the face of reams of evidence forwarded their way, the P&A did nothing that I am aware of. A well-documented trail of deceit, betrayal, delay and cover up of information continued until I finally left the ISP team, disgusted, in September.

She continued in her day program until late November, when it was announced that the cancer had spread and she was back in hospice. At 10:00 A.M. PST on December 14, 2006 my friend gave in to “pain killers” prescribed while she was on hospice care. I believe my friend was euthanized. I believe this was because she was unable to say “yes” or “no”.

David tells me, "I visited her at home, leaving 15 minutes before she died. As I was leaving I kissed her on the forehead and told her 'your death will not be in vain.' It won't. It can't be."

On his blog, David writes, "In life she was easy to overlook, but the way she died will not be."

For that to be true, the rest of us have to care. We have to be bothered enough by the fact that a critical medical diagnosis for a woman who could not speak for herself was met with a team of people dedicated to abandoning her instead of seeing what appropriate medical care might have done to treat her.

We have to picture Tracey. (Or picture me, if you like. There were about six months when I was mostly "nonverbal," and communicated by writing notes people sometimes chose to ignore. There was a doctor at rehab that my parents had to talk to sternly several times before she began taking the time to read what I wrote about my medical care while she stood at my bedside.)

Tracey's story is a scenario that Ashley X's parents feared for their child, and whether or not you agree with the medical treatments they inflicted on Ashley (I certainly don't), concerns that she would meet a fate like Tracey's at the hands of some committee that did not have her best interests at heart are a primary justification for those surgical alterations.

For Tracey's fate to not be overlooked, we have to ensure that the structure of advocacy and care already in place for the most vulnerable of people is actually accountable for serving them fairly and well. David tells me he has the documentation showing all that happened with Tracey's ISP Team. The Advocacy Team he had been a part of was nonfunctional about three weeks after this began. It just needs to be looked at and Tracey's fate taken seriously. That's the job of the Oregon Advocacy Center. This is their contact info:

Oregon Advocacy Center
620 SW 5th Avenue, 5th Floor
Portland, Oregon, 97204-1428
503-243-2081 (Voice)
1-800-452-1694 (Voice)
503-323-9161 (TTY)
1-800-556-5351 (TTY)