Thoughts on the legalization of assisted suicide

This was posted on ADAPT-CAL, an e-mail LISTSERVE on the subject of disability, as part of a continuing debate on physician-assisted suicide.

Marilyn Golden is a Policy Analyst for the Disability Rights Education and Defense Fund.

Given some of the issues about the legalization of assisted suicide that Marilyn Grunwald and others have mentioned, I would like to post some points and thoughts on that subject. I hope you will share them with everyone.

I want to thank Marilyn Grunwald for the kind words about me in her unpublished article. The thoughts below will explain why I think legalization (which is represented right now by AB 374 in the California Assembly) is a dangerous and mistaken step, especially given how our health care system functions today. Dangerous for people with disabilities – but dangerous for our society as a whole. And given the emphasis in what Marilyn Grunwald wrote, I will focus mostly on the society as a whole rather than specifically on PWD’s (People With Disabilities).

First, some general points. I can offer documentation on them if anyone wishes, but will not weigh this e-mail down with lengthy source documentation. By the way, these points have been collected by a number of people, including Paul Longmore and Catherine Campisi; they are not mine alone. After the general points, I will include the text of my recent Op Ed on this subject, which appeared in the San Jose Mercury News on March 1, 2007.

GENERAL POINTS ABOUT THE LEGALIZATION OF ASSISTED SUICIDE AND AB 374

1. A broad coalition opposes assisted suicide: Medical care providers: American Medical Association; California Medical Association; California Hospice and Palliative Care Association. Minority community advocates: League of United Latin American Citizens; La Raza Roundtable of Santa Clara County; Sacramento NAACP. Disability rights groups: California Foundation for Independent Living Centers; California Disability Alliance; Disability Rights Education and Defense Fund; and 16 other organizations representing people with disabilities. As well as organizations representing poor people and uninsured people.

2. These groups all fear the deadly mix of assisted suicide and our profit-driven health care system. The lethal prescription generally used for assisted suicide costs about $100, far cheaper than treatments for most prolonged illnesses. Pressures to cut costs by denying treatment already pose a significant danger. Legalizing assisted suicide would intensify that danger. To deny patients life-sustaining treatments while offering the “choice” of assisted suicide would subtly coerce them toward death.

3. How can California’s legislature consider assisted suicide while millions of low-income families have no access to health care? Is the legislature telling them, “We won’t provide health care, but we’ll make it easier for you to commit suicide when you’re uninsured and at your most vulnerable”? Legalization would place many people, particularly among the disadvantaged and marginalized, at significant risk.

4. AB 374 is modeled on Oregon’s flawed assisted suicide law. That law does not penalize doctors who fail to report assisting suicides. It gives the state no resources or authority to investigate violations or abuses. Moreover, the state destroys its paperwork after each annual report, making it impossible to verify those reports’ conclusions independently.

5. The just-released official Oregon report for 2006 supplies even less information than previous reports. For example, this year’s report no longer lists the number of lethal prescriptions written by individual doctors. In the past, doctors affiliated with the pro-assisted suicide advocacy group Compassion in Dying (since renamed Compassion & Choices) facilitated three out of four such deaths. The new report helps to hide that fact.

6. The Oregon law and the California bill contain “safeguards” that are merely paper protections, easily sidestepped. For example, they purport to limit assisted suicide to terminally ill people who have only six months to live. In fact, the number of days between an initial request for life-ending prescriptions and patients’ deaths has ranged as long as three years. This shows the inaccuracy and unreliability of six-month prognoses. It also indicates that people who are not terminal have been encouraged to take their lives. In the Netherlands, assisted suicide for people with terminal illness has spread to full-blown euthanasia (lethal injections by doctors) for people with chronic illness, people with mental health distress, and even depressed teenagers and infants with disabilities.

7. The Oregon law encourages “doctor shopping” for suicide. Proponents promised legalized physician-assisted suicide would occur in the context of long-standing doctor-patient relationships. Instead, many, and over time perhaps most, deaths have involved short-term relationships with pro-suicide doctors doing cursory examinations. In half the cases 1988-2004, the doctors knew the patients less than three months. The official reports identified the “Duration (weeks) of physician-patient relationship” as ranging from “0-1065.” In other words, some doctors prescribed lethal medications for patients they know for just a few days or not at all.

8. Oregon’s press has reported troubling examples of “doctor shopping,” medication failing, coercion, and deaths of people who did not meet eligibility criteria. Yet none of this has ever appeared in the official state reports. The Oregonian, the state’s major newspaper, complained in 2005 that the law’s reporting system “seems rigged to avoid finding” the answers. Its limitations keep hidden any abuses and irregularities.

9. Oregon’s law protects doctors from legal liability if they act in “good faith.” This is almost impossible to disprove. It legalizes negligence. Like Oregon’s law, the California bill does more to protect physicians from liability than to safeguard vulnerable individuals from harm.

10. Oregon’s data consistently shows that people seek assisted suicide because they fear “dependency,” “loss of autonomy,” and loss of “dignity.” These fears are conditioned by stigmatizing social mores and discriminatory practices that devalue sick people and people with disabilities. But rather than helping such persons to affirm their inherent human dignity, suicide advocates reinforce those prejudices. Dr. Nick Gideon’s, a proponent and practitioner of assisted suicide, declared, “You could palliate pain, but you could not palliate loss of independence.” [Los Angeles Times, March 11, 2007] Furthermore, if “dependency” and “indignity” justify assisted suicide, all people with significant disabilities and especially progressive disabilities will be at great risk.

11. Most people who died under Oregon’s assisted suicide law were suffering psychological distress, not intractable pain. End-of-life care specialists know that depression in most terminally ill patients is treatable, unless there is underlying psychopathology. Legalizing assisted suicide would trap depressed patients in their own requests for death, abandoning them to die in unacknowledged terror.

12. Although assisted suicide claims to support self-determination and choice, there is significant danger of coercion. Oregon’s reports indicate that some older people who feared becoming a financial or caretaking burden on their families chose death. Also, Elder abuse is rampant in the US. California’s Attorney General reports that two out of three perpetrators are family members. Such abuse can easily pressure elders to “choose” assisted suicide, as Oregon’s news media have reported. Despite extensive efforts by California’s legislature and law enforcement to deter elder abuse, assisted suicide could facilitate the ultimate abuse.

13. Assisted suicide endangers people with new disabilities or chronic diseases. People with new disabilities often feel despondent and even suicidal. But over time they typically find satisfaction in their lives. Working through this initial despair usually takes far longer than the brief two-week waiting period in Oregon’s law and the California bill. In that critical early stage, many disabled people could easily take this irrevocable fatal step.

14. In Oregon, assisted suicide is being practiced secretly, without accountability, and without real safeguards. Yet California’s AB 374 repeats the same serious flaws of the Oregon law.

— — — — — — — — — — — — — — — — — — — — — — — —

SAN JOSE MERCURY NEWS OP ED, March 1, 2007

Assisted Suicide Bill Puts Pressure on Patients to Die Sooner

Bad Medicine for California Marilyn Golden Policy Analyst, Disability Rights Education and Defense Fund (DREDF)

For the third time in as many years, a bill to legalize assisted suicide has been introduced in the California legislature. At first glance, it seems like a merciful policy. But a closer look uncovers many reasons legalization would be a dangerous mistake. For this reason, it is opposed by a broad coalition that includes many disability rights organizations, the American Medical Association and other medical groups, the American Cancer Society, the League of United Latin American Citizens (LULAC), the Coalition of Concerned Medical Professionals which does anti-poverty work in poor communities, and many other organizations. While religious groups are in the mix, the opposition to assisted suicide is a broad coalition of left, right, and center. Why such a spectrum of resistance to something that seems so humane?

Supporters of assisted suicide often talk superficially about choice and self-determination. It is crucial to look deeper. We need to think about how assisted suicide would actually function in our medical system and our society as they operate today. Once legalized, assisted suicide would have many unintended consequences. It would especially impact many people in vulnerable circumstances.

One major reason for the diverse opposition is the deadly mix between assisted suicide and profit-driven managed health care. The cost of the lethal prescription generally used for assisted suicide is about $100. That’s far cheaper than the cost of treatment for most prolonged illnesses. The incentive to save money by denying treatment already poses a significant danger. Again and again, HMO’s and managed care bureaucrats have overruled doctors’ treatment decisions, sometimes hastening patients’ deaths. This danger would be far greater if assisted suicide were legal. Denying patients access to life-sustaining treatments while offering them the “choice” of assisted suicide would subtly but coercively steer them toward death. While the proponents of legalization argue that it would guarantee choice, assisted suicide would actually result in deaths due to a lack of choice.

A 1998 study from Georgetown University’s Center for Clinical Bioethics underscores the link between profit-driven managed health care and assisted suicide. The research found that the greater the cost-cutting pressure, the greater the willingness to prescribe lethal drugs, if such prescriptions were legal. The study called for “a sobering degree of caution in legalizing [assisted suicide] in a medical care environment that is characterized by increasing pressure on physicians to control the cost of care.” Assisted suicide advocates tout the example of Oregon, which legalized the practice in 1997. But Oregon shines only if you don’t look too closely. Each year, Oregon publishes a statistical report that leaves out more than it reveals. In fact, several of these reports have admitted, “We cannot determine whether assisted suicide is being practiced outside the framework of the law.” The reports provide only general statistics, no details of individual cases. The statute gives the state neither the resources nor the authority to investigate violations. All of the information comes from doctors who prescribed the lethal drugs. Yet doctors who fail to report face no penalty. Autopsies are not required, so there’s no way to ascertain the person was actually terminally ill. The state has never reported on several prominent cases at variance with the law – these cases came to light only via the Oregon news media. Moreover, the State of Oregon destroys their paperwork after each annual report, so it’s impossible to independently verify their conclusions. The Oregonian, the state’s major newspaper, complained in 2005 that the law’s reporting system “seems rigged to avoid finding” the answers. Yet the California bill contains the same serious flaws as the Oregon statute on which it is modeled.

The bill’s absence of genuine oversight and its weak penalties will allow it to be stretched as has occurred in the Netherlands. Over the past 25 years, the Dutch approach to “death with dignity” for people with terminal illness has expanded into full-blown euthanasia (lethal injections administered by doctors) for people with chronic illness, people with mental health distress, and even depressed teenagers and infants with disabilities.

We should reject this bill as bad medicine for California.

Marilyn Golden Policy Analyst mgolden@dredf.org Disability Rights Education and Defense Fund

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1 Response to “Thoughts on the legalization of assisted suicide”


  1. 1 David McDonald March 28, 2007 at 11:20 pm

    My name is David McDonald and I live in Portland, Oregon What I’ve written here 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 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.

    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.

    Update: I first began sharing this story on 3/14/07 in email. I’ve gotten a lot of response. In fact there are now several websites and blogs where it can be found. I’m truly grateful for all the support and thank those who have helped move it along on behalf of Tracey’s memory. On 3/20/07 I received an email from the P&A’s Executive Director with his “Written Determination”. Although it’s filled with spin, errors, and untruths, at least it’s something to work with. I believe he was compelled to respond to the grievance due to pressure put on him by caring people, unwilling to allow Tracey’s story to be swept under the rug. I can’t come up with another explanation as to why he would respond 79 days after it was submitted. Things can now move forward. Please… keep the pressure on.

    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. My email is dawgoregon@aol.com, and my phone # is 503-285-1242. I look forward to hearing from folks.


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