Can Anyone Help?

I'm reprinting the following that was sent to me by a disability advocate. Essentially, a friend of his who has significant disabilities was diagnosed with cancer. He was chosen to be on a team that would represent his friend and to make medical decisions. He states that he was not allowed to obtain the health file or other information about his friend's cancer. In the end, agency and medical higher ups seem to forego the consideration of any treatment options and put the patient immediately in hospice. Furthermore, he suspects that euthanasia occured through use of pain medications without the patient's consent. The story is long and sordid and I'm not sure what, if anything, can be done to shed light on this problem. I hear stories like these all the time. I thought the very least I could do was reprint it for him. If you do have some ideas or ways to help him, let me know and I will connect you to him.

This is a true story that must be told. There are people who have gone to great lengths to suppress the information herein. What I hope to do is compel those reading it to join with me in demanding accountability from the responsible parties. An investigation independent of Oregon’s Protection and Advocacy agency is needed to decide exactly who the responsible parties are.

In early April 2006 I found out that a close friend of mine had stage 3 colon cancer. 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). 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.

Following that initial meeting where I and another Advocacy Team member voiced our opinion that treatment should likely occur, our participation in decision making was apparently no longer desired.  Decisions were made without our input and we felt we were being regarded as tokens.  Instead, I joined her ISP team as her friend and advocate with no objection from any other ISP team member, and acknowledgement that it was appropriate for me to fill this role. 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. While I complained of a team making decisions without having the medical record to look at, the Health Care Representative took a 10 day vacation to Greece, and the case manager took no action to get the medical record while she was gone. I had already contacted the Protection and Advocacy agency, but received no assistance from them in getting the medical record, even though I had alleged medical neglect. They could and should have gotten the medical record themselves by that time.

A consultation meeting with hospice that involved the entire ISP team only occurred after she had been enrolled in hospice for 2 weeks. This is supposed to happen before making the decision to elect hospice care. This “consultation” consisted of meeting with a hospice social worker and nurse who used what seemed to me like fear tactics to sell their services, including talking about going to a hospital as the indignity of being “loaded” and “hauled off” to an unfeeling and strange place that makes you “wait for hours” for care.

It was obvious that the ISP team would do anything to get me out of the picture and have my friend quietly fade away. My advocacy was characterized by the case manager’s supervisor as “disruptive” and “ancillary” to what the ISP team was doing (damn right), and he began trying to have me removed from my friend’s team. This is in violation of the Oregon Administrative Rule that says that the team can’t be changed when critical health care decisions are being made. He even went to the extent of trying to deceive the Protection and Advocacy agency and keep them out of the loop by changing their email address so they wouldn’t get the cc of his letter calling to remove me.  I filed a grievance with the county developmental disabilities program manager. She declined to communicate with me except through the county’s lawyer. I began to receive letters on official county lawyer letterhead. I asked for my friend’s grievance to be heard by a grievance committee, which is provided for in the state’s administrative rules. I was told that only the program manager and her lawyer would talk to me and the meeting would take place in the county lawyer’s office.

At the end of July my friend was taken off hospice but still received no treatment. The reason given for this move was that she wasn’t eligible for hospice because she wasn’t homebound. The fact is, she had been attending her day program 5 days a week and taking the public lift to get there since a week after hospice had begun.

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 2^nd opinion was an oncology consultation from a second doctor during the same hospital visit.  I believe that no 2^nd 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.

A nurse from the Department of Human Services was assigned to the case and conversations about guardianship started. I complained to the Protection and Advocacy agency that the team was pursuing an inappropriate guardianship (I feared this was in order to put a “do not resuscitate” order in place). I never heard from the Protection and Advocacy agency what happened around the guardianship. I do know that when my wife went to the ARC to get information about pursuing guardianship ourselves, the ARC called the county developmental disabilities office and told them she had been there. 

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”. She was someone with a huge spirit and a small body. She was someone with a quiet demeanor and a profound developmental disability. In life she was easy to overlook, but the way she died will not be.

On January 10, I submitted a grievance with the P&A regarding their handling of my friend’s case.  After not hearing from the executive director in 15 working days, I sent the grievance on to the board’s grievance committee.  After not hearing from them after 30 days, I can only assume that my friend’s death and her life don’t merit their attention.

If you are wondering whether I can back up my claims here, the answer is YES. I have documentation that supports this true story and will share it selectively. What I am looking for in sending this out is feedback, advice, and legal assistance to ensure my friend’s death was not in vain. I also need help in getting as much exposure to this story as possible.

Comments

[cherylc]

This story is horrible. I find the issue of chemo for someone who may not understand it, and might experience it as abuse to be very confusing, however. Especially given the stage of the cancer, and the presumable likelihood of long-term survival. It's hard to tell if her needs were really considered seriously at all. I may be biased too, in that my husband I had a friend who worked with DD adults in Portland, and had worked with a similar population in WA. He said that Oregon services were much worse than in WA, and he was horrified. And they're not fabulous here.

[Lisa]

Yeah, I have not been impressed with the Oregon DD services as compared to Kansas.

I agree, I'm not saying that chemo would have been absolutely the way to go for this person, don't know enough about it...it just should have been considered and appropriate means should have been taken to make the decision. I also find the stuff about the P&A to be particularly discouraging.

[Meredith]

Horrible, but not surprising to me. This story brings up horrible memories: early in my residency I was part of the oncology team starting chemo on a severely developmentally disabled man with lymphoma. His condition would have been curable had he gotten timely treatment, but the legal system here in NY resulted in months-long delays even to get a biopsy for diagnosis. By the time he got to us, he was suffering so horrifically that I would cry at night thinking about him; and of course he couldn't understand or tolerate any of the mundane tortures of the hospital setting, like IVs and blood sticks and Xrays. What would have been a one-week course of chemo as an outpatient for a "usual" patient had to be given in the ICU under sedation, and of course every possible complication ensued and he died months later.

I still don't know what the right thing to do would have been. I think the medical system was just impelled forward by a sense of legal obligation, that by not giving him chemo we would be guilty of discrimination because of his disability, and the fact of the delay in his diagnosis made us err on the side of treatment when it should have made us upfront about the fact that the delay made the chances of failure so much higher - and in fact everyone involved in his care knew in their gut that it would not end well. But the basic problem is, as cherylc says, that these patients' interests and needs were not considered. What an indictment of our supposedly civilized country with its advanced health care these cases are... if we cannot treat developmentally disabled people like the unique and loved individuals that they are, what good is all our talk of human rights and respect for life?

[Bryan Klabunde]

Hey, I can relate with this CRAP! I have it happening to me all the time in Minnesota too. When I was in a Nursing Home after popping my left knee out of the socket backwards, in '99, I was treated as if my pain was gone after my surgery and all Social Services and NH nurses ganged up on me and treated me like a "DRUGGY". Due largely to RUMOURS they'd heard I am sure. They got me cut off pain meds and tho I needed someone to help me after I got out, I didn't qualify for Medical Assistance, therefore, got ignored...to this day. Visit my www.downtownpublishing.com site for more about this. Make some time for it tho...it is a big site.