Death with Dignity reaches adulthood

In 1998, Oregon pioneered a humane, legal alternative for people with terminal illness

In this political year, with its relentless din like the sounds of an agitated troupe of howler monkeys, it’s easy to feel a flood of cynicism and pessimism during all waking hours that makes even the nightmares of sleep seem benign in comparison.

Which is why it’s refreshing to take note of a positive milestone in Oregon political history, the 18th anniversary of the first use of Oregon’s Death with Dignity law, implemented in 1998. The law allows terminally ill Oregonians who are physically capable of self-administering prescription drugs to choose the time of their death. Fiercely opposed from the start, the law endures, a tribute to the basic good sense of Oregonians, who had to go around the Legislature and pass the measure by initiative.

None of the opponents’ lurid fears about the law have come true. So each year, a few score Oregonians are able to obtain a prescription and feel a huge sense of relief knowing that they are not helpless before the ravages of their disease and that they can end their suffering if they wish. Not surprisingly, many Oregonians obtain the prescription but never use it, but they benefit from the law just as much as if they did take the drugs. In their last days, they are freed from terror of the unknown and from overwhelming pain.

America tends to treat aging as a disease and death as an optional exercise, so it makes sense  that the movement for legal Death with Dignity found its first success in Oregon, a state that still prides itself on going its own way politically.

Below is the annual DHS data summary on the use of the Death with Dignity law, followed by the official DHS descriptions of the law and its history.

OREGON DEATH WITH DIGNITY ACT: 2015 DATA SUMMARY
 
For more information:  http://www.healthoregon.org/dwd
Contact: DWDA.info@state.or.us
 
Introduction

Oregon’s Death with Dignity Act (DWDA), enacted in late 1997, allows terminally‐ill adult Oregonians to obtain and use prescriptions from their physicians for self‐administered, lethal doses of medications.

The Oregon Public Health Division is required by the DWDA to collect compliance information and to issue an annual report. Data presented in this summary, including the number of people for whom DWDA prescriptions were written (DWDA prescription recipients) and the resulting deaths from the ingestion of the medications (DWDA deaths), are based on required reporting forms and death certificates received by the Oregon Public Health Division as of January 27, 2016. More information on the reporting process, required forms, and annual reports is available at: http://www.healthoregon.org/dwd.

 Participation Summary and Trends During 2015,

218 people received prescriptions for lethal medications under the provisions of the Oregon DWDA, compared to 155 during 2014 (Figure 1, above).

As of January 27, 2016, the Oregon Public Health Division had received reports of 132 people who had died during 2015 from ingesting the medications prescribed under DWDA.

Since the law was passed in 1997, a total of 1,545 people have had prescriptions written under the DWDA, and 991 patients have died from ingesting the medications. From 1998 through 2013, the number of prescriptions written annually increased at an average of 12.1%; however, during 2014 and 2015, the number of prescriptions written increased by an average of 24.4%. During 2015, the rate of DWDA deaths was 38.6 per 10,000 total deaths. (FN 1)

FN1 – Rate per 10,000 deaths calculated using the total number of Oregon resident deaths in 2014 (34,160), the most recent year for which final death data are available.

 A summary of DWDA prescriptions written and medications ingested are shown in Figure 2.

Of the 218 patients for whom prescriptions were written during 2015, 125 (57.3%) ingested the medication; all 125 patients died from ingesting the medication without regaining consciousness. Fifty of the 218 patients who received DWDA prescriptions during 2015 did not take the medications and subsequently died of other causes.

Ingestion status is unknown for 43 patients prescribed DWDA medications in 2015. Five of these patients died, but they were lost to follow‐up or the follow‐up questionnaires have not yet been received. For the remaining 38 patients, both death and ingestion status are pending (Figure 2).
 

Patient Characteristics

Of the 132 DWDA deaths during 2015, most patients (78.0%) were aged 65 years or older. The median age at death was 73 years. As in previous years, decedents were commonly white (93.1%) and well‐ educated (43.1% had a least a baccalaureate degree).

While most patients had cancer, the percent of patients with cancer in 2015 was slightly lower than in previous years (72.0% and 77.9%, respectively). The percent of patients with amyotrophic lateral sclerosis (ALS) was also lower (6.1% in 2015, compared to 8.3% in previous years). Heart disease increased from 2.0% in prior years to 6.8% in 2015.

Most (90.1%) patients died at home, and most (92.2%) were enrolled in hospice care. Excluding unknown cases, most (99.2%) had some form of health care insurance, although the percent of patients who had private insurance (36.7%) was lower in 2015 than in previous years (60.2%). The number of patients who had only Medicare or Medicaid insurance was higher than in previous years (62.5% compared to 38.3%).

Similar to previous years, the three most frequently mentioned end‐of‐life concerns were: decreasing ability to participate in activities that made life enjoyable (96.2%), loss of autonomy (92.4%), and loss of dignity (75.4%).
 

DWDA Process

A total of 106 physicians wrote 218 prescriptions during 2015 (1‐27 prescriptions per physician). During 2015, no referrals were made to the Oregon Medical Board for failure to comply with DWDA requirements. During 2015, five patients were referred for psychological/ psychiatric evaluation.

A procedure revision was made in 2010 to standardize reporting on the follow‐up questionnaire. The new procedure accepts information about the time of death and circumstances surrounding death only when the physician or another health care provider was present at the time of death. For 27 patients, either the prescribing physician or another healthcare provider was present at the time of death.

Prescribing physicians were present at time of death for 14 patients (10.8%) during 2015 compared to 15.7% in previous years; 13 additional cases had other health care providers present (e.g. hospice nurse). Data on time from ingestion to death is available for only 25 DWDA deaths during 2015. Among those 25 patients, time from ingestion until death ranged from five minutes to 34 hours. For the remaining two patients, the length of time between ingestion and death was unknown.
 

Table 1. Characteristics and end‐of‐life care of 991 DWDA patients who have died from ingesting DWDA medications, by year, Oregon, 1998‐2015

Methods
 
The Reporting System
 
OHA is required by the Act to develop and maintain a reporting system for monitoring and collecting information on participation in the Death with Dignity Act. To fulfill this mandate, OHA uses a system involving physician and pharmacist compliance reports, death certificate reviews, and follow‐up questionnaires from physicians.
 
When a prescription for lethal medication is written, the physician must submit to OHA information that documents compliance with the law. We review all physician reports and contact physicians regarding missing or discrepant data. OHA Vital Records files are searched periodically for death certificates that correspond to physician reports. These death certificates allow us to confirm patients’ deaths and provide patient demographic data (e.g., age, place of residence, educational attainment).
 
In addition, using our authority to conduct special studies of morbidity and mortality, we ask prescribing physicians to complete a follow‐up questionnaire after the patient’s death from any cause. Each physician is asked to confirm whether the patient took the lethal medications. If the patient took the medications, we ask for information that was not available from previous physician reports or death certificates – including insurance status and enrollment in hospice. We ask why the patient requested a prescription, including concerns about the financial impact of the illness, loss of autonomy, decreasing ability to participate in activities that make life enjoyable, being a burden, loss of control of bodily functions, uncontrollable pain, and loss of dignity. We collect information on the time from ingestion to unconsciousness and death, and ask about any adverse reactions. We do not interview or collect any information from patients prior to their death.
 
Because physicians are not legally required to be present when a patient ingests the medication, not all have information about what happened when the patient ingested the medication. Prior to 2010, the physician’s follow‐up questionnaire could be completed based on information from others who were present at the time of ingestion and death. However, during 2010, this procedure was changed so that the follow‐up questionnaire from the physician only addressed issues surrounding ingestion and death if the physician or another health care provider was actually present at the death of the patient. Due to this change and the fact that most physicians are not present at the time of death, more information pertaining to ingestion and death is unknown in the 2010 annual report (such as complications, health care provider presence at ingestion, and minutes between ingestion and unconsciousness and death) than in previous years.

Data Analysis
 
We classified patients by year of participation based on when they ingested the legally‐prescribed lethal medication. Using demographic information from Oregon death certificates, we compare patients who used the Death with Dignity Act with other Oregonians who died from the same diseases. Demographic‐ and disease‐specific DWD rates were computed using the number deaths from the same causes as the denominator. The overall DWD rates by year were computed using the total number of resident deaths. Annual rates were calculated using numerator and denominator data from the same year when  possible, SPSS were used in data analysis.  Statistical significance was determined using Fisher’s exact test, the chi‐square test, the chi‐square for trend test, and the Mann‐Whitney test.

Death with Dignity Act Requirements
 
The Death with Dignity Act (DWDA) allows terminally ill Oregon residents to obtain and use prescriptions from their physicians for self-administered, lethal medications. Under the Act, ending one’s life in accordance with the law does not constitute suicide. The DWDA specifically prohibits euthanasia, where a physician or other person directly administers a medication to end another’s life.
 
To request a prescription for lethal medications, the DWDA requires that a patient must be:
 

  • An adult (18 years of age or older),
  • A resident of Oregon,
  • Capable (defined as able to make and communicate health care decisions), and
  • Diagnosed with a terminal illness that will lead to death within six months.

 
Patients meeting these requirements are eligible to request a prescription for lethal medication from a licensed Oregon physician. To receive a prescription for lethal medication, the following steps must be fulfilled:
 

  • The patient must make two oral requests to his or her physician, separated by at least 15 days.
  • The patient must provide a written request to his or her physician, signed in the presence of two witnesses.
  • The prescribing physician and a consulting physician must confirm the diagnosis and prognosis.
  • The prescribing physician and a consulting physician must determine whether the patient is capable.
  • If either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination.
  • The prescribing physician must inform the patient of feasible alternatives to DWDA, including comfort care, hospice care, and pain control.
  • The prescribing physician must request, but may not require, the patient to notify his or her next-of-kin of the prescription request.

To comply with the law, physicians must report to the Oregon Health Authority (OHA) all prescriptions for lethal medications. Reporting is not required if patients begin the request process but never receive a prescription. In 1999, the Oregon legislature added a requirement that pharmacists must be informed of the prescribed medication’s intended use. Physicians and patients who adhere to the requirements of the Act are protected from criminal prosecution, and the choice of DWDA cannot affect the status of a patient’s health or life insurance policies. Physicians, pharmacists, and health care systems are under no obligation to participate in the DWDA.
 
Reporting requirements
 
Within 7 calendar days of writing prescription:
Patient’s written request for medication/consent form Attending physician compliance form
Consulting physician compliance form
Psychiatric/Psychological consultant compliance form (if applicable)

Within 10 calendar days of the pharmacy dispensing the lethal medications:
Pharmacy dispensing record form

Within 10 calendar days of the patient’s death and/or ingestion of lethal medications: Attending physician’s follow‐up form

The Oregon Revised Statutes specify that action taken in accordance with the DWDA does not constitute suicide, mercy killing or homicide under the law.
 
Links to statutes can be found at https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/Deathwit hDignityAct/Pages/ors.aspx.

Death with Dignity Act History
 
The Oregon Death with Dignity Act (DWDA) was a citizen’s initiative first passed by Oregon voters in November 1994 with 51% in favor.

Implementation was delayed by a legal injunction, but after proceedings that included a petition denied by the United States Supreme Court, the Ninth Circuit Court of Appeals lifted the injunction on October 27, 1997. In November 1997, a measure asking Oregon voters to repeal the Death with Dignity Act was placed on the general election ballot (Measure 51, authorized by Oregon House Bill 2954). Voters rejected this measure by a margin of 60% to 40%, retaining the Death with Dignity Act. After voters reaffirmed the DWDA in 1997, Oregon became the first state allowing this practice.

On November 6, 2001, U.S. Attorney General John Ashcroft issued a new interpretation of the Controlled Substances Act, which would prohibit doctors from prescribing controlled substances for use under the DWDA. After multiple hearings and appeals, the Oregon DWDA was upheld and remains in effect today.

In 2008, the State of Washington passed Initiative 1000, the state’s Death with Dignity Act, which became law on March 5, 2009. Information about the Washington Death with Dignity Act can be found at http://www.doh.wa.gov/dwda.

In 2009, the Montana Supreme Court ruled that physicians may assist patients in ending their lives by prescribing lethal medications (to be self-administered by the patient), citing the state’s Rights of the Terminally Ill Act. Information on the Montana Supreme Court decision can be found at http://searchcourts.mt.gov/getDocument?vid={88A87FE0-2501-438A- AC31-CCE62D37C894}.

[See “Oregon leads California for a Change” below for update.]