Loss of Enjoyment, Autonomy, Dignity: Top Reasons for Seeking PAD

A total of 218 people last year received prescriptions to end their lives at a time of their choosing in 2017, according to the 2017 Data Report on the Oregon Death With Dignity Act (DWDA).

As of January 19, 2018, 143 people had died in 2017 from ingesting the prescribed medications, including 14 who had received the prescriptions in prior years. Of the 143 DWDA deaths during 2017, most patients (80.4 percent) were aged 65 years or older.

Most patients had cancer (76.9 percent), followed by amyotrophic lateral sclerosis (ALS) (7.0 percent) and heart/circulatory disease (6.3 percent). The majority of patients (90.2 percent) died at home, and most (90.9 percent) were enrolled in hospice care.

As in previous years, the three most frequently reported end-of-life concerns were decreasing ability to participate in activities that made life enjoyable (88.1 percent), loss of autonomy (87.4 percent), and loss of dignity (67.1 percent).

Importantly, few patients have been referred for psychiatric evaluation beyond the two physicians required by state law to affirm a patient’s competency to make a request for PAD. Of the patients who were successful in qualifying in 2017, just five were referred for psychiatric evaluation; in 2016 the total was six. (Data are not gathered about psychiatric referrals for those patients who may not have qualified for a variety of reasons, including because they were deemed to have mental illness that compromised their decision-making capacity.)

Oregon psychiatrist Linda Ganzini, M.D., was an early pioneer in studying the intersection between mental illness and terminal medical disease and has been prolific in publishing about PAD in Oregon. In a 2008 paper in the British Medical Journal, Ganzini and colleagues assessed the prevalence of depression and anxiety in 58 Oregonians, terminally ill with cancer or amyotrophic lateral sclerosis, who had either requested aid in dying from a physician or contacted an aid-in-dying advocacy organization.

Of the 58, 18 received a prescription for a lethal drug under the Death with Dignity Act, and nine died by lethal ingestion. Of the 18, 15 participants who received a prescription for a lethal drug did not meet criteria for depression. However, three patients did meet criteria; those three died by lethal ingestion.

Ganzini and colleagues concluded that most patients who request aid in dying do not have a depressive disorder, but that the law “may not adequately protect all mentally ill patients,” and called for increased vigilance and systematic examination for depression using standardized instruments such as the PHQ-9.

In a 2014 editorial in General Hospital Psychiatry, she argued against making psychiatric consultation mandatory for PAD patients. Instead, she advocated “careful systematic screening for depression along with longitudinal evaluation by health care system and hospice social workers for psychosocial concerns and referral to psychiatrists or psychologists with expertise in care of patients at the end of life of those at higher likelihood for depression.”

Ganzini has also studied mental health outcomes of family members of Oregonians who request PAD. A 2009 paper in the Journal of Pain and Symptom Management surveyed 95 family members of decedent Oregonians who had explicitly requested aid in dying, including 59 whose loved one received a lethal prescription and 36 whose loved one died by ingestion of the lethal medication. For comparison purposes, family members of Oregonians who died of cancer or amyotrophic lateral sclerosis and had not requested PAD also were surveyed.

Fourteen months after death, 11 percent of family members whose loved one requested aid in dying had a major depressive disorder, 2 percent had prolonged grief, and 38 percent had received mental health care. “Among those whose family member requested aid in dying, whether or not the patient accessed a lethal prescription had no influence on subsequent depression, grief, or mental health services use,” Ganzini and colleagues reported. “[F]amily members of Oregonians who received a lethal prescription were more likely to believe that their loved one’s choices were honored and less likely to have regrets about how the loved one died.”

Ganzini and colleague concluded, “Pursuit of aid in dying does not have negative effects on surviving family members and may be associated with greater preparation and acceptance of death.” ■