This is a full transcript of our Executive Director Peg Sandeen’s testimony, at today’s joint hearing of the Health Committee and Government Operations and Judiciary Committee of the Maryland House of Delegates, in support of HB 0404, Richard E. Israel and Roger “Pip” Moyer End of Life Option Act. Note that the testimony aims to refute some of the opposition’s allegations. We have also added subheadings for clarity.
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My name is Peg Sandeen, and I am pleased to provide my testimony to the Committee today. I am a social worker with a PhD in Social Research, and I have more than 20 years experience working directly with people who are terminally ill. I am an Oregonian, and the Executive Director of the Death with Dignity National Center. I am here to share with you our experiences in Oregon, having successfully implemented the Oregon Death with Dignity law for 18 years.
The proposed law you are considering today is, at its core, a medical standard of care designed to provide physicians and pharmacists with best practice guidelines for the situations in which a terminally ill and competent patient requests the right to control the timing and manner of his/her death. National research published in peer-reviewed medical journals indicates that physicians in every state, including Maryland, help patients die through the use of prescription medication. By enacting the Richard E. Israel and Roger “Pip” Moyer End of Life Option Act in 2016, the Maryland Assembly will send a strong message that a compassionate response to suffering is available in the state; one that contains significant and carefully-regulated safeguards to protect patients and prevent misuse.
Death with Dignity puts decisions about easing suffering in the hands of a small team of individuals: terminally ill patients, their family members, their physicians, and their religious or spiritual leader, if they so choose.
Lessons Learned from Oregon
From my point of view working with individuals in Oregon over the last decade that I have been involved with Death with Dignity, I see three remarkable and important “lessons learned”:
- There are an overwhelming number of safeguards built into the law you are considering. They include: patients must be terminally ill with 6 months or less to live as confirmed by two physicians; patients must make 3 requests to their physician, including one in writing observed by qualified witnesses; and patients must go through 2 separate waiting periods before they can receive medication. Multiple independent studies have examined these safeguards and proved there has not been any abuse.
- The law is rarely used. According to the Oregon Health Authority, about 4 out of 1,000 deaths in Oregon were attributable to Death with Dignity. In fact, in 18 years, fewer than 1,000 Oregonians have taken medications prescribed under the Death with Dignity law.
- The passage of Death with Dignity in Oregon led to improvement in the care of dying patients by increasing awareness among doctors, allowing open and honest conversations, improving pain management and palliative care, and providing patients with a sense of control and peace of mind. In national benchmarks, Oregon consistently ranks among the top states for providing quality end-of-life care, hospice services, and palliative care for terminally ill patients.
Death with Dignity vs. Suicide Rates
I’d like to address a point brought up several times today by those opposed to end-of-life policy reform regarding trends in suicide in Oregon. The fact is that Oregon suicide rates and trends mirror other states in the West—Wyoming, Montana, New Mexico, Alaska, Nevada, Idaho, Colorado, South Dakota, Utah and Arizona. These states make up the states in the nation with the highest rates of suicide.
Contrary to the suggestions and misleading statements made by opponents of passing this law today, the Oregon Death with Dignity Act has not caused or contributed to any increase in suicide rates among the people of our state.
Oregon looks like its neighbors in terms of trends, and the respected, data-driven sources of information—from the CDC, WHO, and National Institute of Mental Health to the American Association of Suicidology and NAMI (National Alliance on Mental Illness)—all conclude that the high rates of suicide in the West are related to access to guns, isolation, mental health concerns that go untreated among people living in rural communities, and alcohol use and abuse, not the existence of the Death with Dignity Act.
In national benchmarks, Oregon consistently ranks among the top states for providing quality end-of-life care, hospice services, and palliative care for terminally ill patients.
Refuting Misinformation About Extralegal Cases
Another issue I’d like to clarify relates to allegations that Oregon’s Medicaid program denied poor patients coverage for cancer treatments, instead offering to pay for Death with Dignity.
A word of explanation about the Oregon Health Plan, our Medicaid program, is necessary. The Plan operates on an evidence-based model, including a requirement that all approved cancer treatments demonstrate a 5% chance of survival over five years. This standard was established upon solicitation of information and guidance from every oncologist in the state.
I have seen this letter spoken about today; perhaps I am the only person in the room who has. In no way does this letter deny treatment for cancer and offer physician aid in dying instead, as has been insinuated. What I know from reading the letter is that the treatment in question was a futile line of treatment prescribed after multiple expensive treatments had been approved and provided. In clinical trials, it failed the 5-percent-in-5-years standard. Poorly written and insensitive, yes, it was that, too.
Page two of the letter contained a comprehensive list of options available to the individuals who were denied futile cancer treatment. The list included: hospice (inpatient or in-home), symptom management, medical equipment, palliative services, in-home care and nursing support, and state-of-the-art symptom management. Embedded among the list of options available: Death with Dignity.
The juxtaposition of the two issues, that our Medicaid program does not pay for futile treatments (those failing the 5% survival rate in 5 years) and also pays for Death with Dignity, was sensationalized in the media. There is no relationship between the two. As stated by our Governor at the time, an emergency room physician, “No treatment has ever been denied because death would be more ‘cost effective.’ The very idea is both abhorrent and a blatant distortion of the facts.”
So, why do we hear about these extra legal cases, which have zero evidence of proof and are a blatant distortion of the facts? Have you been offered the letter to examine, so that you can determine for yourself what it says?
We hear about these extralegal cases with insinuated situations and no proof because the data out of Oregon about the Death with Dignity Act is unassailable. Independent studies published in respected, peer-reviewed medical, clinical, and legal journals have determined that the safeguards built into Oregon’s law, and replicated in the law you are considering today, work. Patients are offered dignity and compassion, vulnerable populations are successfully protected, and there is no misuse. The respected Journal of the American Medical Association, the Journal of Medical Ethics, and New England Journal of Medicine have all published independent studies demonstrating that the law works as planned.
Against that mountain of evidence, opponents hint, insinuate, and suggest, and produce no real evidence against the law. Why? Because, there is none.
Let me conclude by saying that the process in which you are engaged is of the utmost importance to the people of Maryland who want and deserve the highest quality, most humane end-of-life care possible. I applaud your efforts and offer my personal and professional assistance with any other questions you may have about Oregon’s model legislation as you grapple with this profoundly important subject.
Featured image by Richard Martin.
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