"Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me... but would have taken so much more.”
Brittany Maynard posted that message to friends and family on Facebook before she died on Nov. 1, 2014. Diagnosed with terminal brain cancer, the 29-year-old Californian moved to Oregon so she could become a resident and use its Death With Dignity Act.
Physician-assisted death (PAD), which has long been a controversial topic, is legal by state law in California, Colorado, Oregon, Vermont, Washington and the District of Columbia. It is legal in Montana through a court ruling, and more states are considering similar bills.
In a policy statement published in Social Work Speaks, NASW stated it is mindful of a variety of opinions concerning the legalization of PAD and recognizes that states govern decisions in their own jurisdictions, so it “has not adopted a national position either in support of or in opposition to legalization.”
“In states in which PAD is legal, however, NASW affirms both the right of individuals to choose this option and the responsibility of health care systems and practitioners to honor clients’ choices.”
In states where PAD is being considered or is legal, “NASW also affirms the social work role in creating and implementing state policies and procedures that reflect the ethical values and principles of social work, such as preventing abuse of individuals in vulnerable situations.”
“Furthermore, NASW upholds the social work role in clients’ end-of-life decision-making processes and encourages further study, both within and beyond the profession, of the many complex issues associated with PAD.”
The statement also lists 19 specific principles and goals related to clients’ end-of-life decision making and care.
NASW-Oregon Executive Director Delmar Stone, BA, MSW, said his father had a difficult death, and Oregon’s law was why he moved there — so he would have an option his father did not have.
The state’s Death with Dignity Act turned 20 years old on Oct. 27. To qualify, a person must be at least 18 years old and a state resident. He or she must be judged mentally competent of making and communicating health-care decisions, diagnosed with a terminal illness with six months or less left to live and have the ability to take the prescribed medication.
Stone, who also is executive director for NASW-Idaho, said Oregon social workers had few questions about the law.
“The only questions initially were from people wanting clarification,” he said. “There was a bit of confusion at first, that’s all. I went online and found the answers. The state is very responsive to questions about it.”
“Oregon had a lot of people working on this. There was overwhelming social worker support. I did hear some people say ‘It’s God’s decision, not social workers’. I don’t hear that any more.”
At the most recent convention with hospice social workers, Stone said some believed the option was unnecessary since palliative care currently is so advanced.
Some organizations and groups have praised the law.
A Journal of Medical Ethics report stated: “Rates of assisted dying in Oregon... showed no evidence of heightened risk for vulnerable populations, including: the elderly, women, the uninsured... people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations.”
In October 2007, Robert Joondeph, executive director of the Oregon Advocacy Center (OAC) and a licensed attorney, declared: “OAC has never received a complaint that a person with disabilities was coerced to make use of the Dignity Act.” Now named Disability Rights Oregon, the group in February 2016 affirmed it still had not received a single complaint.
Compassion & Choices — “the nation’s oldest, largest and most active nonprofit organization committed to improving care and expanding options for the end of life” — said the law is credited “with increasing referrals to hospice care, improving the quality of pain management services and encouraging physicians and families to have early and honest discussions about honoring the wishes of dying patients.”
Other states have modeled their laws on Oregon’s.
The Death with Dignity Act passed Nov. 4, 2008, and went into effect March 5, 2009.
A report on the state website for 2016 states medication was dispensed for 248 “participants” from prescriptions written by 140 different physicians and dispensed by 47 different pharmacists.
Of those, “240 are known to have died, 192 died after ingesting the medication, 36 died without having ingested the the medication” and ingestion status is unknown for 12 people, the report states.
The youngest was 33 years old and the oldest was 98. Ninety-seven percent were white, 67 percent “had at least some college education,” 77 percent had cancer, 8 percent had ALS and 16 percent had illnesses including heart and respiratory disease and “unknown illnesses,” the report states.
Eighty-seven percent had reported concerns about loss of autonomy, 66 percent had reported concerns about loss of dignity and 84 percent reported concerns about loss of the ability to participate in activities that make life enjoyable.
Of the 192 who died after ingesting the medication, 88 percent were at home at the time of death and 77 percent were enrolled in hospice care, the report states.
A court decision legalizing PAD began on Oct. 17, 2007, when Robert Baxter, who was suffering from lymphocytic leukemia, with four Montana doctors and Compassion & Choices, filed a case seeking recognition that the right to choose aid in dying is protected by the state constitution’s guarantee of privacy, dignity and equal protection.
He asked the court “to affirm his legal right... to hasten his inevitable death and die in a peaceful and dignified manner” by taking medication prescribed by his doctor. The physicians, who wanted to know if they could assist a patient in dying and not be subjected to a criminal prosecution, joined the suit.
State District Court Judge Dorothy McCarter issued a summary judgment “holding that the state constitution’s individual dignity clause and its ‘stringent’ right of privacy are ‘intertwined’ as applying to the assertion that competent and terminal patients ‘have the constitutional right to determine the timing of their death and to obtain physician assistance in doing so.’”
The state appealed.
On Dec. 31, 2009, the Montana Supreme Court in a 5-2 decision ruled that Montana residents “have the right to choose aid in dying under state law.” It also reviewed the state law on “Rights of the Terminally Ill” and found the “legislature specifically defers to a patient’s own decisions” and “affords patients the right to control their own bodies at the end of life.”
The court found “the decision to self-administer life-ending medication receives the same treatment as a decision to discontinue life sustaining therapies such as mechanical ventilation.”
The Vermont law, signed by its governor on May 20, 2013, is Act 39, “an act relating to patient choice and control at end of life.”
General statistics in a January 15 “Report to the Vermont Legislature,” posted online in December 2017, state between May 31, 2013, and June 30, 2017, there were 52 “total events that met the definition of Act 39.” Of those, the state has 48 death certificates.
“Four cases are assumed to still be living since all deaths are reportable to the Health Department,” the report states. “Twenty nine utilized the patient choice prescription, 17 died from the underlying disease, one died from other causes” and there was one unknown cause of death.
General disease groups reported were: cancer in 83 percent, 14 percent were ALS and 3 percent were “other causes.”
The act protects palliative care, stating it “shall not limit or otherwise affect the provision, administration, or receipt of palliative sedation consistent with accepted medical standards.”
It also mentions social workers in the section requiring that the patient be of sound of mind, stating, “The physician either verified that the patient did not have impaired judgment or referred the patient for an evaluation by a psychiatrist, psychologist or clinical social worker licensed in Vermont for confirmation that the patient was capable and did not have impaired judgment.”
The End of Life Option Act was signed into law in October 2015 and went into effect June 9, 2016.
Janlee Wong, MSW, executive director of NASW-California, said the chapter did not oppose the bill or have any debates about it.
“We were pretty careful to not make it a high priority for the chapter,” Wong said.
Some religious groups opposed it and some people with disabilities were concerned something would be done to them, but those with diminished capacity were told not to worry, Wong said.
“You have to be in charge,” he said. “It’s aimed at people who can make their own decision and request it and then participate in administering the medications.”
The chapter has for decades encouraged using advance directives and will continue to do so, Wong said.
So far, implementation of the law has gone like people thought it would, considering the experience in Oregon: Some acquire the prescription and never take it, he said.
“Not everybody goes through with it,” Wong said. “Fifty-eight percent went through with it. That means people absolutely have the choice all the way through to the end.”
The state’s first report found 258 individuals began the process, 191 received a prescription and 111 ingested it, Wong said.
“Those are tiny, tiny numbers given the overall population of close to 40 million people,” Wong said. “The act is a measured balance between what people believe and what choices they have and what they want to happen to them at the end of life.”
When a patient is considering end-of-life decisions, social workers’ code of ethics and training call for having a conversation, he said.
“Sometimes clients don’t know what they want,” Wong said. “Social workers should be there to talk with them, but we don’t make the decision or tell a client what to do. We are there. We share information and we use our training to help people go through whatever they’re going through.”
“It’s tough for us, too. Social workers go through a vicarious trauma with any population,” he said. “We use professional detachment, which means we find a way to act professionally and control our emotions to the point where they don’t interfere with working with a client. That’s where we need to be.”
The chapter hasn’t received any calls or heard any stories of problems, he said.
“I think social workers think about an issue carefully and refer to the NASW Code of Ethics and Social Work Speaks as a way to provide some intentional, fundamental guidance,” Wong said. “In many ways, our generalist training is based on this framework.”
Natalie DeVille, BA, MSW, LCSW, C-ASWCM
Voters passed Proposition 106, the End of Life Options Act, on Nov. 8, 2016, by a 65 percent to 35 percent vote, and the law went into effect Dec. 16, 2016.
Natalie DeVille, BA, MSW, LCSW, C-ASWCM, and a Nationally Certified Guardian, is care management supervisor in Older Adult and Caregiver Services for Lutheran Family Services (LFS) Rocky Mountains.
She is project leader for the Advance Care Planning Initiative for a grant funded through the Colorado Health Foundation. The goal is to provide education on the importance of advance card planning (ACP) and provide hands-on assistance in creating Advance Directives, primarily in faith communities with older adults.
“Even when the legislation was merely proposed and had not yet been voted on, I began getting lots of questions about medical aid in dying, primarily how it would impact those with religious beliefs against things like euthanasia,” DeVille said. “Most organized religions in the U.S. have social statements that speak against what people interpreted the legislation to say.”
So she could answer their questions, provide factual information “and be mindful of LFS’ position as a faith-based nonprofit, I created a one-page handout and developed a canned answer to the question.”
“More often than not, simply saying that it is a personal choice and cannot be enacted if a medical power of attorney is active does the trick,” DeVille said. “I find that many people, especially older adults, are afraid of it because they think their children or family can make the decision for them.”
She “takes great efforts” to not use the term physician-assisted death.
“To me, it implies that the physician is there, in the room, prompting the patient that it is time and giving the lethal dose,” DeVille said. “The Colorado End of Life Options Act or medical aid in dying is an option. It is an option for a patient with a terminal illness to end their life on their terms with the aid of multiple medical providers.”
“In my work with older adults, especially those with dementia — and in my personal life — I have heard over and over wishes to just have the option.”
She educates patients and their families on what the law says and educates people on what they can and cannot do. And she has been “fascinated” by the variety of questions she gets from the older generation.
“You wouldn’t think that group would utilize the law,” DeVille said. “Very often, it’s left to social workers to do the initial education of anything. The first time some people hear about something is when they’re meeting with a social worker — or a social worker is the only person they feel comfortable asking.”
Because where she works is a faith-based nonprofit and she gives presentations on advanced care planning, they had to come up with a plan on what would be said. That was decided on by a group comprising employees from top to bottom. The information that could be given is: what the new law is, where a person can go for information on it and talk to your physician about it. And that should be given only if asked for, she said.
“Where I feel social workers can be helpful is helping with questions the family has,” DeVille said. “I think working with the family, helping them to find some peace with the decision a patient makes is definitely a social work role.”
She believes it is important for social workers to know about the legislation and answer questions that come up without “steering people one way or another.”
“We should be able to speak to both sides, remain neutral and provide education,” DeVille said. “We also need to be cognizant of the fact we have an aging population, and just because those people are over 65, don’t assume they’re not interested in this legislation.”
One woman had just received a new, “devastating diagnosis” — she had ALS. She was living in a nursing facility and had case workers, managers — a whole team of people.
“I brought up ‘has anybody asked her how she wants this to end?’” DeVille said. “Everybody’s eyes got big and nobody wanted to bring it up. I think it’s important for social workers to think about that, and if and when you can talk about it to your clients, know what to say if they want to explore it.”
“Death is like this taboo word. I tell people if you’re over the age of 18, you need a plan in place. I encourage people to talk about this. I am comfortable talking about it. It is just another option for the end of someone’s life — whether they are 32 or 82.”
James Kuemmerle, BA, MS, MSW, ACSW, BCD, LCSW, is program manager for Older Adult Specialized Services in Thornton, Colo., and vice president on the NASW-Colorado board of directors.
He saw issues with this pop up in three states he worked in while Colorado was the only state with the options law.
“In two of the three states when this issue arose, immediately the reaction was to place (the person) on an involuntary psychiatric hold,” Kuemmerle said. “I am not sure what IP treatment was going to do for these individuals.”
He recently was on a conference call where a woman refused hospice services “and just wanted the suffering to end. Most people involved in the case were hesitating on whether she should be placed on a psychiatric hold.”
“In the end, she was not placed on a hold and hospice services restarted,” Kuemmerle said. “I am not sure what county the case was from, but no one on the call had dealt with this situation before and they were not sure how to proceed.”
He believes the issue will come up again.
Kuemmerle has heard the cost of the medication “may be a barrier for folks here.”
“One other thing is, we’re a state where 30 percent of hospitals have religious affiliation — mainly Catholic,” he said. “That’s also a potential barrier.”
“With some of the challenges we might be facing, I think we need to have discussions at the chapter level on what we could be doing to support social workers — members and non-members — who might be dealing with challenges in their daily work or with those that pop up unexpectedly.”
The Washington, D.C. Death with Dignity Act was signed by Mayor Muriel Bowser on Dec. 19, 2016, it went into effect Feb. 18, 2017, and was implemented June 6, 2017.
The bill was transferred to Congress for a required 30-day review on Jan. 6, 2017. Six days later, Sen James Lankford, R-Okla., and Rep. Brad Wenstrup, R-Ohio, introduced companion resolutions disapproving the law. The resolutions did not reach the floor by a Feb.17 deadline.
Medical aid in dying is authorized in six states and the District of Columbia, “representing 18 percent of our population, with 40 years of combined experience without any misuse of this option,” wrote Yanira Cruz in an article published in The Hill on Oct. 28, 2017. “An issue that really concerns me is the minimization of the suffering of terminally ill Latinos in the District of Columbia, as well as dying Americans nationwide.”
Cruz, who earned master’s and doctorate degrees in public health from the George Washington University School of Public Health and Health Services, is president and CEO of the National Hispanic Council on Aging.
“This issue is very personal to me,” she wrote. “My mother lived in D.C. and died in agony from gallbladder cancer in 2015. Mama Elizabeth loved life. She loved to travel to her native El Salvador. She loved to run. She was a real fighter.”
“Unfortunately, after months of radiation and chemotherapy, my frail mother decided to stop all medical treatments that would only prolong the agonizing process of dying. She went into hospice and died four months later after enduring horrific pain,” Cruz said. “Most people won’t need medical aid in dying, but laws authorizing this option benefit many terminally ill adults by spurring conversations with their physicians and loved ones about all end-of-life care options, including hospice and palliative care and better utilization of them.”
A Massachusetts bill named End of Life Options could make it the next state to legalize PAD.
Rebecca Gewirtz, executive director of NASW-Massachusetts, said the bill is similar to Oregon’s, and it was in committee in December after hearings.
“We have until February 2018 to report the bill out,” she said. “If there’s a groundswell of support, it can move faster. This bill affords terminally ill patients the right to choose their own way for life to end.”
Gewirtz noted data from Oregon that shows many people who obtain life-ending prescriptions under that law do not use it.
“They get it for control, to not feel powerless in the last stage of life,” she said.
The chapter’s board discussed the issue at length, hearing both proponents and opponents, and decided “ultimately, this is about client self-determination, it’s about clients being able to make choices at the end of their lives,” Gewirtz said.
Many of their social workers in the field became educated about the bill, they understand it and they testified in support of it, she said.
“They have loved ones who have suffered,” Gewirtz said. “They understand a social worker’s role is to support people in end-of-life choices that work for them. Most people won’t opt for that, but the ones who do — who are we to say they’re denied access to this and forced to suffer?”
“Most people don’t want the government to tell them what to do with their bodies. It’s not our place to tell them what to do.”
Something good has come from debate about the bill whether it passes or not, she said.
“In our society, people don’t want to think about death,” Gewirtz said. “This issue has people talking about the end of their lives. That’s good.”
If the bill passes, the chapter will provide continuing education training if members want it, including bringing in some social workers from other states that have laws in place.
There is a lot of public support for the bill, so much that the Massachusetts Medical Society changed its position from opposition to neutral, she said.
If it passes, the chapter might do public information sessions so everyone understands the law. Some disability rights activists, for example, are worried the law would apply to them, Gewirtz said.
“This law only applies to terminally ill people,” she said. “No one is going to force anybody to do anything. It’s about people having a choice — that’s it.”
It is well known in California that Gov. Edmund G. “Jerry” Brown Jr. is a religious man. After graduating from a Catholic high school, he entered a Jesuit seminary, then later earned college and law degrees.
When he signed the End of Life Option Act into law Oct. 5, 2015, he wrote the California State Assembly, saying:
“ABx2 15 is not an ordinary bill because it deals with life and death. The crux of the matter is whether the State of California should continue to make it a crime for a dying person to end his life, no matter how great his pain or suffering.”
“I have carefully read the thoughtful opposition materials presented by a number of doctors, religious leaders and those who champion disability rights. I have considered the theological and religious perspectives that any deliberate shortening of one’s life is sinful.”
“I have also read the letters of those who support the bill, including heartfelt pleas from Brittany Maynard’s family and Archbishop Desmond Tutu. In addition, I have discussed this matter with a Catholic bishop, two of my own doctors and former classmates and friends who take varied, contradictory and nuanced positions.”
“In the end, I was left to reflect on what I would want in the face of my own death.”
“I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”