20 Years of Physician-Aided Dying in Oregon: No Surprises

Roxanne Nelson, BSN, RN

April 07, 2017

Physician-aided dying (PAD) is a controversial subject in the United States, and the debate has become increasingly heated as more states enact laws permitting this practice. 

Oregon was the first state to legalize the practice when it passed the Death With Dignity Act (DWD) in 1997. Now, 20 years later and despite fears to the contrary, there is little evidence that it has been abused.

An assessment of the Oregon experience by Charles Blanke, MD, professor of medicine, Knight Cancer Institute, Oregon Health and Sciences University in Portland, and colleagues has just been published in JAMA Oncology.

Medscape Medical News has reported much of this before, in September 2016, when Dr Blanke presented these data at the  Palliative Care in Oncology Symposium (PCOS) 2016.

"The data are similar — just fleshed out a bit more," said Dr Blanke.

"PAD is now legal in 6 states and Washington, DC," he told Medscape Medical News. "The take-home message is that PAD is increasingly being utilized and they are utilizing PAD for reasons that are not easy to palliate using other means."

Oregon Was First

Because Oregon was the first state to enact a PAD law, it is seen as a model for assisted-suicide legislation throughout the United States, and so the trends and demographics are of particular importance.

The DWD has strict criteria to protect both prescribers and users from civil and criminal liability, and no evidence has emerged that it is not being adhered to.

Patients must be a resident of Oregon and have a life expectancy of 6 months or less; the prescriber must be a physician with an MD or DO degree licensed in Oregon; patients must be capable of making health decisions for themselves; patients must be able to self-administer the drugs; and physicians must inform the patients of alternatives, including comfort care, pain control, and hospice. 

In addition, the patient must make two oral requests and one written request for PAD, over a minimum period of 15 days.

No Evidence of Misuse

In their analysis, Dr Blanke and colleagues sought to determine use of PAD and its effectiveness, as well as to gauge promising areas of research.

Deaths related to the DWD have been increasing over the years, but they still make up only a fraction of overall Oregon resident mortality, with a rate of 38.6 per 10,000 total deaths.

Since the law was passed in 1997, a total of 1545 people have received prescriptions for a lethal dose and 991 patients have died from ingesting the medications.

The authors note that from 1998 to 2013, there was an annual average increase in number of prescriptions written of 12.1% (from 24 to 121 over the entire period), but during 2014 and 2015 it increased by 28% to 41% (121 in 2014 and 218 in 2015). The ratio of prescriptions written per year to the number of patients who actually died from ingesting the medication, ranged from 0.48 to 0.82 (median, 0.64), but no significant trend was observed over time.

More than three quarters of patients had cancer (77.1%). Lung cancer was the most common malignancy (17.9%), followed by breast cancer (7.4%).

The patients were relatively evenly divided by sex (51.4% male and 48.6% female), and most were white (96.6%).

Patients varied by age, with 10% younger than age 55 years. The youngest patient was 25 years old, and the oldest 102 years; the median age was 71 years.

Nearly all patients (92.2%) were enrolled in hospice and had health insurance, and almost three quarters (70.8%) had at least some college education.

Approximately two thirds of patients who received a prescription actually took the medication, and the dose was lethal in nearly all cases (>99%).

Dr. Blanke and his coauthors note that when they reviewed the reasons patients gave for wanting to end their life, only a quarter cited inadequate pain control. Instead, most (92%) cited a perceived loss of autonomy, followed by an inability to participate in enjoyable activities, and (78.7%) gave loss of dignity as their primary reason.

"Inadequate symptom palliation has been cited as a reason patients seek PAD," write the authors. But in reality, the end-of-life concerns that patients are experiencing "appear difficult to palliate."

They also point out that relatively few patients (n = 52 [5.3%]) were referred to psychiatrists for determination of competence. But increasing access to therapists and counseling for other purposes, such as meaning-centered group psychotherapy, has been shown to improve spiritual well-being and end-of-life sense of meaning, and this could substantially help patients considering PAD, they note.

Finally, in identifying areas for potential research, the authors note that it would be helpful to understand why some patients do not take the medications once they are prescribed and "whether an algorithm can be derived to advise patients on how long the medications will require to work, and whether we can better palliate end-of-life concerns, avoiding or delaying PAD."

Thoughts on Oregon

Two experts weighed in on PAD in Oregon and the questions and issues that still need to be addressed.

"The Oregon experience has proven to be successful, and relatively few people use the PAD option," commented Art Caplan, PhD, Drs. William F. and Virginia Connolly Mitty Professor of Bioethics at New York University's Langone Medical Center in New York City.

"It is likely that some of the 36% who never used the lethal meds would have killed themselves without legal PAD," Dr Caplan told Medscape Medical News.  "Knowing they had a parachute if things grew intolerable may have prevented suicide in some instances."

However, Dr. Caplan pointed out that more must be done to study the policy and process. "What do doctors, families, and friends think after a PAD death?  Is the model best applicable for cancer — what about other terminal diseases?  Do efforts to dissuade people from taking lethal meds work and why?"

Much more careful research is needed, given growing legalization in other states and possibly Canada. "States that legalize PAD would be wise to insist that independent assessment by competent researchers of the policy and short- and longer-term impact on families, partners, and friends be a requirement," he added.

Guy Micco, MD, a hospice/palliative care physician and clinical professor, emeritus, UC Berkeley–UCSF Joint Medical Program in California, reiterated that he was glad to see that this paper confirmed "what we have already heard and believe — that a goodly percent of people who request the prescription, don't use it; that over 90% were in hospice care; and that the reasons for the request are largely those beyond what good hospice/palliative care can 'treat.' 

"And, it's also good to see that there are no unpleasant surprises in the data," he told Medscape Medical News. "Despite an increase in requests over the years, there hasn't been a rush to PAD, with PAD deaths making up less than half a percent of Oregon deaths per year."

Dr Micco also noted that there is still much to learn, especially from "what went wrong."

"Why did 25% of people requesting PAD say that inadequate pain control contributed to their decision — a minority, but still, as the authors point out, too many," he said. "What percent of these went on to die by PAD? What percent of those who cited loss of autonomy go on to take the drugs?

"It may be that, for many of these people, more than for others with other reasons, just having access to the medication was sufficient," Dr Micco explained.

There are a few other concerning issues, one being the cost of what is probably the "best" drug for PAD — secobarbital. "In California, the price has skyrocketed, inappropriately — unless you are the pharmaceutical company making it."

Secobarbital was developed more than 80 years ago,  and 100 capsules — the lethal dose — sold for less than $200 in 2009. By 2016, the price tag was $3000.

Second, Dr Micco noted, is the time it can take for the drugs other than secobarbital, which are much less expensive, to work. "It doesn't seem right that, after the difficult decision is taken and the patient finally ingests the drugs, the family/loved ones must sit around waiting, wondering how long, worrying that the patient will awaken, occasionally for hours," he said.

In the Oregon study, one person took "more than 4 days" to die. 

Dr Micco also questions why it is necessary for a patient to self-administer the medication. "A patient with ALS or other disease that limits the ability to move hand with drug to mouth, might not be able to do so," he emphasized. "Why should this person not be given the same 'right' to PAD as another who has this ability? In fact, a person might postpone PAD longer if they knew they wouldn't have to self-administer."

"The above problems — cost, time to work, self-administration — would all be obviated by allowing a physician to inject one or more lethal medications when the time came, as determined by the patient," he added. "It seems we are not ready for this obvious, rational and kind step." 

The authors have disclosed no relevant financial relationships.

JAMA Oncol. Published online April 6, 2017. Abstract

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