Latest News:

“We Have to Be Part of the Debate”: Ann Jackson on the Role of Hospice in the Death with Dignity Movement

October 8, 2017

To commemorate the 20th anniversary of implementation of the Oregon Death with Dignity Act, we are featuring stories of those who in 1997 campaigned against the repeal of the law adopted by Oregon voters 3 years before. Today we are featuring an interview with Ann Jackson, who was president of the Oregon Hospice Association from 1988-2008.

Other installments in the series:

It is a fairly safe bet that most sixth graders have not spent hours pondering the pros and cons of euthanasia. Ann Jackson, the former executive director of the Oregon Hospice Association and nationally recognized leader in policy discussions about end-of-life care, was not your average sixth grader.

“I first wrote about it for a book report,” Jackson explains during our September 2017 interview at her Portland home. She borrowed books from the library and consulted her family’s large collection of encyclopedias. She learned the hows and whys of euthanasia – broadly defined as a means of ending a life to alleviate pain and suffering – as well as the arguments for and against the practice. After reading an article that resonated with her, “I came out for euthanasia.”

“Of course,” she says, smiling, “when I got into the euthanasia debate in the 1980s, it was very different.”

Jackson, who holds an MBA in not-for-profit management, was hired to be the executive director and chief executive officer of the Oregon Hospice Association (OHA), now the Oregon Hospice and Palliative Care Organization, in 1988. She had worked on political campaigns and was a skilled fundraiser, but had no experience in health care. She quickly became acquainted with the complexity of end-of-life care issues and soon found herself engaged in one of the most contentious and consequential debates about death and dying in the United States.

Ann Jackson, former director of the Oregon Hospice Association, speaks at her retirement celebration in 2008.

In 1989, the late state Senator Frank Roberts introduced his first of three Death with Dignity bills. The political climate was not hospitable, and the bill went nowhere. It did, however, kickstart a lively conversation about death, dying, and end-of-life choice.

Citizen initiatives to legalize euthanasia by lethal injection had been or were being considered in Washington and California. They were defeated by voters in 1991 and 1992. These bills addressed the doctor’s role in administering a lethal dose of medications that would hasten a patient’s death. A crucial difference between euthanasia and physician-assisted death, or Death with Dignity, is that the latter requires the patient to self-administer medication provided to her by a doctor, giving the patient an autonomy and control not afforded by euthanasia.

At the time, Jackson says, “Nobody considered asking hospice” to be part of the conversation. “They [the Oregon Hospice Association] didn’t have a big presence.” Some of that was by choice.

“Our board in 1989 decided that they did not want to be part of the debate,” Jackson recalls. “And our membership said, how can we not be part of the debate? Who else knows about end-of-life care like we do? We have to be there to educate. We have to be part of it.”

When Jackson joined OHA, hospice was still a relatively new and little-understood form of end-of-life care.

“When I first started, there were 5 paid hospice organization directors in the whole country. Most state hospice organizations were run by a volunteer, elected president. I was the only paid hospice director west of the Mississippi.” The other four were Maryland (a part-time position), Michigan, North Carolina, and Ohio.

Most Americans were either not aware of or did not understand what hospice was, except for the fact that it was exclusively for the terminally ill. As defined by the National Hospice and Palliative Care Organization, hospice is “a team-oriented approach of expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s wishes. Emotional and spiritual support also is extended to the family and loved ones.” Hospice care is provided at “home”, or where the patient lives.

Hospice is regarded by many as the best and most compassionate way to provide care to terminally ill patients in their final stage of life. Which is one reason why the 1994 debate over Measure 16, the proposed Death with Dignity Act, became so contentious: because hospices believed they could provide sufficient pain management and comfort care such that an assisted dying law was unnecessary.

“The National Hospice Organization at that time…presumed that there was going to be competition” between Death with Dignity proponents and hospice workers. “I could never understand, why did it have to be hospice versus physician-assisted suicide?” (She makes clear that she uses the term “physician-assisted suicide” to reflect the terminology of the time. Today, she refers to the practice as Death with Dignity or medical aid in dying.)

“The Oregon Hospice Association had been very active prior to the [November 1994] election,” Jackson says. “We had not taken a position until a month before.”

We remained neutral until after an interactive meeting broadcast live and simultaneously in five Oregon communities. “How will you vote”? was jointly sponsored by OHA and Oregon Health Decisions, a nonprofit that works with individuals and families on end-of-life care planning. The goal was to educate voters about the proposed law and learn more from participants about how they would vote on Measure 16, and why.

“We were very on about who was going to be using Oregon’s Death With Dignity Act, if it became law, and why they were going to be using it,” Jackson says.

In a stark contrast to past conversations about Death with Dignity, OHA and its member hospices were squarely in the middle of the debate. Jackson was in the unenviable position of advocating for quality end-of-life care while simultaneously leading an organization that a month before the election had stated its opposition to the proposed law.

“I was the spokesperson for the Oregon Hospice Association – for all hospices – on this issue,” Jackson says. “They would send me all of their problems; none of them had to deal with picket signs outside their organizations. I bore the brunt” of criticism leveled at OHA for its stance on Measure 16. Yet Jackson stood by OHA’s decision.

“I believed the law was unnecessary if terminally ill Oregonians had access to high-quality hospice and palliative care,” Jackson says.

But Oregon voters thought differently. On November 8, 1994, Oregonians passed Measure 16 by a 51.3% to 49.7% margin, making clear their support for assisted dying and their belief that Death with Dignity was a fundamental right for all terminally ill patients.

“I had been planning all along for what our response was going to be,” Jackson says. “I issued a press release immediately indicating that we would recommend that all persons who are considering using Oregon’s Death with Dignity Act be referred to hospice if they weren’t already a hospice patient.”

In fact, one hospice declared its intent to discharge anyone who planned to use the law. It later cited liability issues related to the patient’s’ status as Medicare recipients and their concerns that they would not be reimbursed for their services. Jackson says other hospices around the state were “appalled” and did not follow suit.

“We made clear that we supported the right of Oregonians to have access to all legal end-of-life options,” Jackson says. “We also supported the right of hospices to develop their own policies.”

OHA’s stance ran afoul of the National Hospice Association.

“Once the Oregon law was passed, Oregon was considered just a terrible state,” Jackson says. “The fact that we did not fight it after it was legalized in 1994, and the fact that we did not oppose it strongly…put us in a very bad position in many respects.

“Our board went so far as to at one point to consider dropping our membership” with the national organization, “because we were viewed with such disdain.”

Jackson and OHA supported Measure 51, the 1997 Oregon Legislature’s attempt to repeal the law. Again, their stance was based on the conviction that the state’s network of hospices could provide terminally ill patients with the care they needed at the end of life, rendering an option like Death with Dignity unnecessary.

It was not until after voters defeated Measure 51 on a 59.91% to 40.09% vote that OHA shifted its official stance.

“I had to speak on behalf of the OHA, and our position is that we had no position,” Jackson says. “It no longer mattered whether medical aid in dying was right or wrong. It is the law in Oregon.” We strongly believed that people had the right to choose, so I was able to talk about that very broadly.”

Jackson is frank about her own change of heart.

Over time, I realized I had been arrogant to believe that hospice and palliative care professionals can meet all the needs of dying persons, or that the desire to determine the manner and timing of one’s own death was somehow unworthy,” Jackson wrote in an April 5, 2017 opinion piece in the Eugene Register-Guard.

We were very clear that we did not want anyone to use the Death with Dignity Act for a reason that we could fix. And we did recognize that we couldn’t fix everything.

She tracked the data the Oregon Health Authority collects about patients who have used the Oregon Death with Dignity Act and had conversations with patients about what informed their end-of-life care decisions.

“When you look at the data and the people who use the law, what kind of diseases do they have? The ones that are going to have the most distressing symptoms as they get closer to death. They’re going to be unable to breathe. They’re going to be unable to swallow. They’re going to lose their ability to do anything. They don’t want to prolong their death.” The Death with Dignity Act, she says, provides a way to end suffering before it becomes unbearable.

“This should absolutely be part of providing end-of-life care and promoting conversations between the physician and the patient.”

Jackson says that the Oregon Death with Dignity Act has enabled more public dialogue and communication between doctors and patients about death, dying, and end-of-life choice

“Conversations in Oregon are easier because we can talk about anything,” she says. “That’s a big, big benefit.”

Even so, she notes that many people do not know how to talk to their doctors about their wishes – or are too afraid of sounding ignorant to ask crucial questions.

“They’re afraid of being turned down, or seeming like they don’t know what they’re talking about,” Jackson says. “Patients should be proactive, and give their doctor permission to be open and honest about their condition”.

At the same time, Jackson says, “The medical community is not doing as well as they should be” in initiating important but difficult conversations about death and dying.

“I think most people just assume that their doctors are going to tell them what they need to know, when they need to know it. But doctors wait for patients to tell them when they are ready” to learn the details of their disease and their prognosis. Doctors should be up front with their patients and say, ‘you can talk to me about anything, I’ll tell you the truth.’”

Jackson has devoted most of her professional life to educating about, investigating, and working to improve the full continuum of end-of-life care. In addition to her work with OHA, Jackson represented OHA on the Task Force to Improve Care for Terminally Ill Oregonians; has participated in numerous initiatives with the National Hospice and Palliative Care Organization; and played a role in developing the conditions of participation for hospice adopted by the Center for Medicare and Medicaid Services (CMS) in 2008.

Since her 2008 retirement from OHA, Jackson has worked as an independent consultant, providing policy expertise to administrators and legislative bodies and helping individuals and families navigate the complexities of end-of-life care. She also authors research articles, gives presentations, and testifies before government bodies across the US and internationally about the Oregon experience. She relies on the wealth of demographic data collected by the state to make the case that the Oregon law works as planned and that opponents’ fears of patient coercion or ineffective medication are unfounded.

 

Val Lovelace-Ann Jackson Maine

Ann Jackson with Maine advocate Valerie Lovelace in Hallowell, Maine, following the April 5th, 2017 hearing on LD 347.

“I want to defend Oregon,” Jackson says, “which is part of the reason I still continue on. I am in a position to speak very broadly, from a neutral position instead of for or against it. I’m supporting the whole continuum of care at the end of life. I’m generally speaking to people in the middle who really want to understand what’s going on.”

Like many people in the Death with Dignity movement, Jackson is frustrated by legislators’ fear of supporting medical aid in dying.

“They get cold feet every time there’s an election,” Jackson says. “There have been some surprising defeats” because politicians are intent on upholding the status quo. “‘Do I dare step over this line? I personally think it’s a good idea, but my constituents? I’m not sure.’” And that’s it.”

“If I’m in the audience, I can refute what they say, and I can talk about what’s really happened,” Jackson says.

She has hope that, slowly but surely, more lawmakers will come out in favor of Death with Dignity legislation. In the meantime, she dedicates much of her energy to increasing the public’s awareness and understanding of hospice. She remains surprised and frustrated at how little most people with whom she speaks understand this vital component of end-of-life care.

“Most people when they find out what it is that I do want to talk about it,” Jackson says. “At first, they may just stand back and walk away,” averse to beginning a conversation about a topic that addresses death and dying head on. “But the next time I see them, they’ll say, ‘I just wanted to talk to you about my stepfather’” or any loved one with a terminal illness.

But despite increased interest from the public, Jackson feels that there are misperceptions about when and how hospice should be utilized.

“Some people think if you choose hospice, that means you’re tempting death,” Jackson says. “And if you [refuse] hospice then death isn’t going to occur. And I can often give the argument that…hospice is a win-win. If you get better, if you get discharged, you’ll be able to go on. And if you don’t, you’ll still have it.”

What’s more, hospice is covered by Medicare, making it accessible to a large percentage of the US population.

“This one of the few entitlements you have as a citizen of the United States who is eligible for Medicare,” Jackson says. “You’re going to waste it?”

It has been 20 years since Oregonians voted to uphold the Oregon Death with Dignity Act. In that time, and especially in recent years, the state has seen a significant influx of people from out of state who may not be aware of the law. Jackson thinks the time is right for a renewed conversation about Death with Dignity and end-of-life care more broadly.

“Let’s revisit this, let’s talk about it,” Jackson says. “It is time to have another conversation.”

Nearly three decades after she first became involved in the world of health care, Jackson continues to champion the right of all individuals to access and receive quality care in their final stage of life.

“I advocate for Death with Dignity,” Jackson says. “But what I’m really advocating for is excellent end-of-life care.

“I make myself available because I know so much and it’s a shame to waste [that knowledge.] I know I can make a difference.”

 

One comment.

David Gilbert
November 29, 2017 at 2:58 pm

Of course we must not be surprised that many legislators fear decisive commitment on advocating for Death With Dignity, after all, they too fear facing directly the variable unknown consequence, and results of the physical, moral, and ethical component of helping death along. Humanity in general will hesitate, or procrastinate in the face of this unknown; it is a person of great integrity and courage to face ‘head-on’ this discussion. I applaud and respect Ann Jackson for her commitment to proactively spread her understanding and knowledge of this sensitive subject; to help make the unknown more recognizable. But it must be repeated again, and again – pursuing individual choice is a fundamental right that must be afforded to all people. It’s a hypocrisy when those with law making power are influenced by group opinion or silent majority, choose inaction or default to fear, rather than objectively facilitate progressive discussion for the individual. Clearly it is the strength of the individual and a need for progressive knowledge that builds a compassionate society. ONLY when one FACES this personal experience and indeed sees, feels, hears or emotes the deepest anguish of human suffering, may they be able to begin to grasp the importance of the right to choose Death With Dignity. Our culture is now conditioned to hand off this reverent and delicate dance – now termed ‘a process’ to a higher authority; hospital, county, municipal or state government. The question is; how to reflect forward, or impress upon the ignorant individual; possibly only one at a time so as to negate group opinion or ‘pack mentality’, to empathically expose the sympathy, compassion, courage and comprehension needed for or by an individual while on their extremely personal and unique journey towards death. The answer will come from intelligent sharing of knowledge, from legitimate discussion, and from significant personal dialogue with those who HAVE faced or shared death with their fellow human being.

Leave a Comment:

This site uses Akismet to reduce spam. Learn how your comment data is processed.