Death With Dignity in Oregon: No Evidence of Abuse or Misuse

Roxanne Nelson, BSN, RN

September 20, 2016

SAN FRANCISCO ― Oregon was the first state in the United States to enact a physician aid in dying law, known as Death With Dignity Act (DWD). Now, almost 20 years later, there is little evidence that it has been abused.

Since the passage of the law in 1997, a total of 1545 people have been written prescriptions under the DWD in Oregon, and 991 patients have died from ingesting the lethal medications.

A majority of the patients had cancer, said Charles Blanke, MD, professor of medicine, Knight Cancer Institute, at Oregon Health and Sciences University in Portland.

"Users are predominantly elderly, white, and well educated," he added.

"Almost all patients are in hospice, and almost all take the medications at home after telling loved ones of their decision," said Dr Blanke, who provided an update on Oregon's experience here at the Palliative Care in Oncology Symposium (PCOS) 2016.

It is relatively rare for patients to use DWD because they were suffering from inadequate pain palliation, he explained. The most common reasons were related to quality of life, autonomy, and dignity.

Controversial Law

Physician-aided dying is a controversial subject in the United States. One of the fears of implementing such laws has been that disadvantaged patients would be disproportionately affected by it.

Another fear is that laws such as the DWD open up a proverbial slippery slope. There is concern that once it is permitted for terminally ill patients, the rules could then easily become less stringent and begin to include other populations.

In the Netherlands, euthanasia and physician-assisted suicide are permitted for patients with early dementia or psychiatric disease, as all as for those who have no serious illness but are just "tired of living."

Death Under the Oregon Law

Because Oregon was the first state to enact a physician aid in dying 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.

Dr Blanke explained that DWD is legal for Oregon residents, although that term is loosely applied, and the law, known as Measure 16, barely squeaked by Oregon voters. "It passed by a 1.3%, and despite federal challenges, it has remained in place," he said.

Currently, four states now permit physician aid in dying ― Oregon, California, Vermont, and Washington. A fifth state, Montana, allows it through a court decision.

Legislation is currently pending in a number of other states, said Dr Blanke, "But it has also been voted down in many others."

In Oregon, multiple rules have to be followed, and no evidence has emerged that the strict criteria are not being adhered to.

In addition to being a resident, patients must 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 three separate requests for lethal medication, and the physician must remind the patient at several points that they can change their mind at any time.

The cumulative state records show that the prescribing rate increased 12% per year on average through 2013, with a 28% increase in 2014 and a 40% increase in 2015.

"This was not a result in simple growth in the Oregon population," said Dr Blanke. "Even though the number of prescriptions has increased, DWD deaths make up only a tiny fraction of Oregon resident mortality."

Most DWD recipients had cancer (77%); others had amyotrophic lateral sclerosis (8%), lung disease (4.5%), cardiovascular disease (2.6%), and HIV (0.9%). Of cancer patients, lung cancer was the most common type.

The most common reason for seeking DWD was being "less able to engage in activities making life enjoyable" (96%), followed by loss of autonomy (92%) and loss of dignity (75%).

Only about a quarter (28.7%) of patients cited inadequate pain control or concern about it as a primary reason.

A total of 363 Oregon physicians have written DWD prescriptions, ranging from 1 to 71 prescriptions.

About 5% of the patients received psychiatric evaluation. According to the law, the referral is solely at the discretion of the attending or consulting physician.

"The prescribing physician may request a psychiatric consultation to ensure patient competence," said Dr Blanke, "but in reality, this rarely happens."

Taking the Medication

The majority of patients took the medication at home (94%), with a "smattering doing it in a nursing home or equivalent (5%).

"Only one single patient was admitted to a hospital at the time of medication administration," he pointed out.

As for the drugs used, pure pentabarbitol was at one time the drug of choice, but opposition to capital punishment by European suppliers adversely affected access, and secobarbitol has now taken its place.

The problem with secobarbitol is that it is expensive, costing about $3500 to $7000. "Insurance coverage is mixed," Dr Blanke told Medscape Medical News. "Some patients have to pay the complete cost out of pocket."

Use of secobarbitol is also complicated. About 100 capsules have to be opened and mixed with liquid, and many patients lack the dexterity to accomplish that. "As an alternative, a triple cocktail of morphine, chloral hydrate, and phenobarbital may be compounded," he pointed out. "It is cheaper — about $400 — but it is acidic and, anecdotally, it takes longer for the patient to die."

Only about two thirds of patients actually take the prescribed drugs once they fill the prescription. "It could be that just knowing that they have the option is enough," said Dr Blanke. "It's there if they need it, and it may relieve their fear of loss of control."

The efficacy of the lethal medication is 99.4%, although, curiously, six patients have regained consciousness after taking it.

Dr Blanke noted that this "field appears ripe for formal study."

Demographic and prescribing information has been collected. Now researchers need to understand why one third do not take the legal medication, he said. "Researchers need to find out how we can palliate end-of-life concerns that are not related to what many think of as causing classic suffering, meaning other than pain."

Need for Quality Palliative Care

Commenting on the study, Joseph D. Rotella, MD, chief medical officer for the American Academy of Hospice and Palliative Medicine (AAHPM), noted that the AAHPM has taken a position of neutrality as to whether physician-assisted dying should be legally permitted or prohibited.

In its official position statement, the AAHPM has voiced concerns about a shift to include physician-assisted dying in routine medical practice, including palliative care.

Although there is no evidence thus far of a slippery slope, "that is indeed a possible unintended long-range consequence that we cannot yet discern but could emerge over time as physician-assisted dying is practiced in different jurisdictions," Dr Rotella told Medscape Medical News.

"This research presented at the Palliative Care in Oncology Symposium is important because we need to continue studying how it is practiced, wherever it is practiced, in order to detect and mitigate such unintended consequences," he said.

One argument sometimes cited is that if patients had access to better palliative care, they might not be seeking this alternative. Dr Rotella noted that the goal of palliative care is to "ease our patient suffering and to do everything possible to help an individual be free of pain, fear, and other distressing symptoms, such as nausea, discomfort in breathing, and confusion, when facing serious illness.

"We have special training and expertise in managing these symptoms, and we believe that in almost all cases, quality palliative care can do this effectively for patients who are dying," he explained. "We know that too many patients do not have access to palliative care, putting them at increased risk for unnecessary suffering."

Dr Blanke has received travel and accommodations expenses from Novartis. Other coauthors report relationships with industry. Dr Rotella is chief medical officer for the AAHPM and is founder of Catalyst HPM, a consulting company.

2016 Palliative Care in Oncology Symposium. Abstract 44. Presented September 10, 2016.

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