Long Beach resident Anita Freeman, 70, could barely hold back the tears as she recounted the painful final days of her sister Elizabeth Martin’s battle with colon cancer. “Everything that could go wrong went wrong,” Freeman said. “We’ve really had a horrible time of just trying to understand why all this was happening.”
Having been diagnosed four years ago, Martin, 66, had successfully bested the cancer until June of this year, when it came back “with a vengeance.” The terminal disease had spread throughout her body — lungs, liver, spine — and Martin’s daily life was agony. Her family moved her to hospice care, but the palliative procedures were not enough. Martin, who had end of life directives in place, including Do Not Resuscitate (DNR) requests, could no longer endure the pain — she wanted to die.
“She pleaded with the palliative doctor, begged the doctor, ‘Couldn’t you just give me a magic pill that I could just go to sleep? Because I know what’s ahead of me.’ And he said, ‘No, California law will not allow that,’” Freeman said.
Freeman watched helplessly as her sister’s condition worsened with each day. “That was my baby sister all my life. And I couldn’t help her. And it was making me angry; it was making me question the medical profession, asking, why? You told us you were gonna help us. And nothing was working.”
Her sister spent her final weeks in a violent delirium before passing away in a state of barbiturate-induced unconsciousness on July 25. Despite her pleas, Martin’s doctors could legally do nothing to relieve her suffering; they could only numb the pain. The system meant to alleviate her sister’s suffering only prolonged it.
To avoid witnessing nightmarish dying processes like these, other families have chosen to avoid California law altogether by uprooting to states where physician-assisted suicide is legal. In the well-known case of 29-year-old Brittany Maynard, diagnosed with terminal brain cancer, she ended her battle on November 2 by taking life-ending medications in the state of Oregon.
Maynard’s decision to shorten her life, rather than let the fatal disease continue any further — as well as the decisions facing patients like Martin, who may want to die but are legally barred — has sparked a national debate: Should terminally ill Americans legally have the choice to end their lives?
A Missing Tool from the Toolbox
Here in Santa Barbara, many feel dying individuals should have the choice — including Cecily Hintzen, a former quality systems analyst for Cottage Hospital who now runs Pathfinders Memorial Planning in Santa Barbara. Hintzen and Pathfinders help people navigate the dying process, and she quickly sensed the gap in the procedures and options available to those facing an imminent and terminal illness.
“I just really believed that medical aid in dying is a missing tool from the toolbox,” she said. “We have palliative care, and hospice care, and it’s wonderful when it works, and it works most the time; but when it doesn’t, there needs to be more options for people.”
In February of this year, Hintzen decided to take action by joining Compassion & Choices, a Denver-based nonprofit working toward expanding end-of-life options in the U.S. The campaign sought expansion in the Santa Barbara area, and fellow volunteers selected Hintzen in July as organizer of the Santa Barbara chapter. The group has hosted and will continue to host informational meetings around town on current legal end-of-life options as well as enlist supporters. The group has upcoming informational meetings on November 5, 12, and 19, at the Santa Barbara, Carpinteria, and Goleta libraries, respectively, to educate voters and families of patients facing end-of-life care.
“The hard part is getting it out there; some people haven’t even heard of ‘death with dignity,’” she said. Hintzen has spoken with county supervisors and representatives about introducing a death with dignity resolution on the county or city level. Though the response has been “very positive,” local politicians are generally reluctant to commit to a bill that is still “too much of a hypothetical,” she said.
This is not the first time Californians have debated death with dignity. Numerous attempts — Prop. 161 in 1992; two Death With Dignity Acts in ’95 and ’96; the California Death with Dignity Act in ’99-’00, and the California Compassionate Choices Act introduced in ’05-’06 and ’07-’08 — all failed. Groups such as the California Medical Association and the Catholic Conference of Bishops have reportedly put pressure on representatives to vote against death with dignity laws. Despite a lack of legislative success, nearly 64 percent of 2014 California voters would support a death with dignity act, according to a Compassion & Choices poll.
Oregon, Washington, Vermont, New Mexico, and Montana all have laws allowing a state resident 18 years or older, who is “capable of making and communicating health care decisions for him/herself,” and has been diagnosed by two physicians as having “a terminal illness that will lead to death within six months,” to obtain such medication, the Death With Dignity National Center reports.
“We have seen increased interest from legislators who are committed to this issue at the state level, but we have been looking at what we need to do to actually pass this law, and are we going to be able to do it through Legislature, or are we going to have to do it through the people?” said Toni Broaddus, Compassion & Choices California Campaign Director.
State Senator Hannah-Beth Jackson, who co-authored the Death With Dignity Bill in 1996, said it is “very likely” a bill could come to the State Senate within the next two years. “I do respect everyone’s right to die with dignity, and the right of every person to address the issue of their death in their own way,” she said. “We have to allow people to make their own choices, and I look forward to continuing the discussion so that one day people like Brittany don’t have to plead to end their lives when they are terminally ill.”
In the absence of concrete legislation, the Compassion & Choices Campaign is focused primarily on building grassroots support.
“We are working very hard in California to make sure our campaign reflects the diversity of Californians,” Broaddus said. Broaddus made a particular appeal to Latinos, for whom “family and religion [are] very important … and it’s important with us to wrestle that distinction between what they understand from their faith and what they understand from their relationships — they want to do the right thing.”
Doing the Right Thing
The issue generates such controversy in part because “the right thing” can be so difficult to determine in the medical and ethical gray zones of terminal illness: What constitutes the end of life and the beginning death, and what role may the living play in aiding the patient transition from one phase to the other?
Numerous individuals have been persecuted for aiding their dying loved ones, such as Bill Bentick, a retired Palm Springs entomologist and medical equipment designer who in 2012 was jailed for three days on $1 million bail for not intervening when his terminally ill wife, 77, removed her own oxygen catheter. Then there is Pennsylvania resident Barbara Mancini, who was charged with homicide last year when she provided her dying father with morphine, which he was legally permitted to self-administer. Mancini made a hospice worker aware of the situation, and within a matter of hours the police had intervened: Mancini, for handing her father his medicine, was a murderer-to-be. Her father lived his final days in a hospital, receiving life-prolonging treatment he had explicitly requested not to receive.
“My father made the choice to consume what was in that bottle. Whether or not he intended to end it all by all that, he had severe pain that was under-treated. A death with dignity law could have protected my father’s life without suffering, could have spared him from dying with the knowledge that I was arrested, spared my family the misery we went through,” Mancini said.
No Santa Barbara residents have been prosecuted for aiding in a suicide, Santa Barbara District Attorney Senior Deputy Lee Carter reported. Of 52 total suicides reported in a 2012 Community Health Status Report released by County Public Health, 10 were committed by individuals aged 75 or older. Though the elderly do not account for a statistically significant portion of county suicides, many elderly do experience despair upon nearing the end of their lives.
“Unfinished business, regrets, painful unresolved relationships all add to the psychological challenges, fears and suffering, particularly if not faced and addressed,” said Susan Plummer, executive director of the Alliance for Living and Dying Well (ALDW), a local support network for patients facing end-of-life care. “Usually a person knows they are dying, but at times, loved ones are reluctant to invite open conversations about how the person feels, thoughts, fears, questions, etc.”
While Californians cannot legally seek medically aided death, they can complete an Advance Health Care Directive, which indicates what kind of end-of-life treatment they want to receive, and Five Wishes for whom they would like care for them and how. The ALDW has a staff of 50 advanced care professionals who hold monthly workshops on end of life directives at Sansum Clinic, Visiting Nurse and Hospice Care, Hospice of Santa Barbara, Vista del Monte, B’nai B’rith Temple, and Garden Court.
Dr. Dennis Baker, a member of the Palliative Care Consultants of Santa Barbara, feels it is of utmost importance for patients to begin having these conversations with their families and caregivers. “The more discussion, the more documentation, the better,” he said. He feels the State of California does offer patients a great degree of choice and autonomy over death through advance directives. “I honestly can say that people can have a dignified death of their own control without having to turn away from the system we have in California. I think it really can be done.”
However, difficulties may come due to a disagreement in treatment. “Within the medical community, physicians may be not wanting to let go, or give up, or express anything but hope that things are going to get better. Physicians are not all on the same page; some are very much connected to their ideal.”
Baker is a strong advocate for hospice care, which he feels is generally sufficient in meeting the needs of the dying in Santa Barbara. Some, like Mancini, feel that though hospice care can meet those needs, there is no reliable way of knowing which hospice providers will give adequate care; some, she said, provide the opposite.
“The hospice failed him miserably,” she said, recounting how the hospice neglected to provide her father with prescription painkillers; it took Mancini’s prompting and two weeks of delay until he could receive them. Even then, the hospice supervisor advised a lower dose than initially prescribed. “The hospice worker interceded to relieve his pain to lower the dose to the order which hospice never provided anyways, and of course it didn’t relieve his pain. She said he was ‘comfortable despite pain.’ I don’t believe I’ve ever heard such a ridiculous thing in my life.”
Hospices are paid on a per-diem basis, meaning they are funded by Medicare, Medicaid, or private insurance based on how many days a patient enrolls. A longer life means more funding. “How much incentive does hospice have to be on top of things if they’re getting paid no matter what they do? All the hospices have been in for-profit sector — there is money to be made from your dying loved one,” Mancini said, though she made clear she did not know one way or another whether this was a factor in her father’s treatment.
While physician-assisted suicide remains an undecided issue on the state’s political landscape, the renewed debate has opened up a number of related conversations on how best to take care of California’s dying: what constitutes a life worth living, and how can medical practices be amended to ensure as comfortable a dying process as possible.
“In America our medical profession is focused on everything possible to cure people, and we have not learned yet how to help people die peacefully. And I think we’re seeing that shifting,” Broaddus said.
Anita Freeman hopes the shift comes soon, so that others do not have to experience what her family did.
“All we’re asking for is choice. It’s that simple,” she said.