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Conversation Between The Montpelier Bridge and Deborah Lisi-Baker, Executive Director of the Vermont Center for Independent Living

Deborah Lisi-Baker, executive director of the Vermont Center for Independent Living (VCIL), a disability rights organization, talked with The Bridge about a bill currently before the Vermont Legislature that if passed would "with appropriate safeguards" permit a "mentally competent person with less than six months to live" to request lethal medication to end his or her life.

(The Bridge) What was it like, and here we're talking generally, to die, even 20 or 30 years ago?

(Deborah Lisi-Baker) It was a natural process, not always an easy one. Dying was not something most people felt they could control. Sometimes people died of old age or lingering illness, but often it was sudden. Someone had a heart attack and they died quickly; or they died from pneumonia, or infection, or injury, sometimes from cancer. Yes, there were some long illnesses and sometimes people died in a great deal of pain.

(The Bridge) What are the changes, what is it like to die today?

(Lisi-Baker) In many circumstances, medical science has gotten really good at delaying death. People have heart attacks or strokes and there's surgery, medications, diet, exercise and people's lives are lengthened. People are living with or cured of cancers that were an almost immediate death sentence just years ago. The same thing is true with AIDS. In the past, people were more likely to die at home. Today, they're more likely to die in hospitals and nursing homes.

(The Bridge) Do you conclude anything from these changes?

(Lisi-Baker) Once death takes place in a high-tech setting the cost escalates dramatically. I think that death as part of the human experience - we haven't figured out a way to claim it, to make a positive place for it as part of our human experience. We don't know how to talk about it, even with the people we care about most. There are people such as AIDS and hospice volunteers and workers -- and some families and committed and trained health professionals as well --- who have found a language and the skills and understanding to be present and allow death to happen in a respectful, caring way. Sadly, this is not how most deaths happen today.

(The Bridge) Could you talk about the current - it's almost a crusade - to be able to ask your doctor to prescribe lethal medication to end your life?

(Lisi-Baker) Here is something that's interesting, the national "Death with Dignity" campaign came out the Hemlock Society which used to promote individuals being able to end their own lives without the help of a physician. It's interesting now when people are concerned about too much medical control at the end of life - they're moving to give physicians a new role in assisting people to end their lives. The Hemlock Society had favored a private, individual act and what's being proposed is much different. People talk about it as a private act. But when you ask a physician to provide assistance it becomes a social act and a political issue.

(The Bridge) But what about the crusade, who are the players, how much money is being spent, who is supporting the current bill (H.44 or S.63) in the current Vermont Legislature?

(Lisi-Baker) There is a national death with dignity campaign. I've been told that $75,000 has been raised in in-state money and that as much as $250,000 has come into the state from outside sources. Vermont is really a test state. In Oregon, the permission for doctors to prescribe lethal medication to end a person's life was approved by a referendum vote, not by the legislature. So what happens in our legislature could have national impacts.

And there are very powerful players who have lined up in support of these two bills. People like former governors Phil Hoff and Madeleine Kunin, political figures like Barbara Snelling, and current legislators like Peter Shumlin, Doug Racine, Susan Bartlett - it's a long list. All of the sponsors are caring, committed legislators. They feel that permitting doctors to prescribe lethal medication is a matter of individual rights. They're also responding to a lot of very real horror stories of people who suffered unnecessarily and in pain.

At the same time, this is not just a "pain" bill. This bill allows you to request lethal medication to hasten your death to avoid disability and to avoid being a burden on your family. I think we need to reach behind the stories to shape a social response that honors the concern but addresses unanswered legal, policy and resource questions. We need to do it soon.

The fact that many good people support the bill does not make it good public policy.

(The Bridge) Why, Deborah, do you oppose the bill? Why does your organization, the Vermont Center for Independent Living (VCIL), oppose the bill?

Takes Medical System Off the Hook

(Lisi Baker) I oppose the bill because I think that a bill that changes the role of a physician in this way has very dangerous social and political implications. In a sense, it takes the whole medical system off the hook. This bill doesn't say that everyone must have access to quality pain management services and hospice care. It requires people to be informed of other services but it doesn't require that they be offered. It doesn't make ending one's own life another step in a continuum of pain management. It doesn't require the state to spend any more money to make certain those services are available. It doesn't require that doctors who might offer lethal medication are trained in supporting other options and alternatives. It's a shortcut and it's a shortcut that some people want.

Vulnerable Groups Need Ombudsman

(Lisi-Baker) At the same time, in a society in which many people go without decent care, pain management support, and hospice, a lethal dose may be the only tangible response that some people are given to pain or a desire to end their life. It doesn't offer an ombudsman option to people who have disabilities and others who may be under pressure and therefore vulnerable about ending their own lives. It doesn't insure that people have access to personal care and respite and assistive technology and peer support.

Free Choice or Only Choice?

(Lisi-Baker) The bill says clearly that people are supposed to be making an independent choice. But when people are dealing with pain, with inadequate or no insurance, with new experiences of becoming disabled, with financial fears and anxieties, when does the choice to end one's life become what feels is the only option. Taking a lethal medication may well be seen as a possible choice for people who have money and resources. But for others, it may be seen as the only choice.

Here's another point. If the state decides to legislate this new role for physicians, it will happen in a society and at a time when there are tremendous inequities in access to health care. In such a situation, the state needs to "own" its responsibilities and the potential to harm some while giving others greater choice. Does Vermont have the political will to ensure that resources will be available that truly support independent choice, informed decision-making, and equal protections?

A Need for Very Close Monitoring

(Lisi-Baker) The proposed oversight and recordkeeping required is based on what is done in Oregon, which limits its reporting requirements to assurances that the last doctor followed the basic steps required in prescribing the medicine. There is no effort to verify the decision or review medical records to assess quality of care or compliance with other expectations of the law or best practices in care. If we want to promote quality end of life care and consumer safeguards we have to do more than track the number of people who requested a lethal injection and a record of what the last doctors did, the ones who authorized those pills. We need to track as well what kind of care did these people get, what was their diagnosis, how often did they "doctor shop" and for what reasons, what care did they get in the process, what circumstances were they in, what were their disabilities and health conditions and how well did the dying process go?

What can we learn from following those who request care-the questions, concerns, and needs that come up- from the first time they talk to a doctor about pain and end of life choices till the last act-that will lead to better pain management and end of life care for others? We need to make sure that we are promoting such options as quality pain management, psychiatric counseling for those people who need it. The proponents of this bill say it's just for a relatively small number of people. If that's the case, those people who are considering ending their own lives must be very closely monitored to see that they have real choices, services, and quality pain management at the end of life.

Deal with Chronic, Unbearable Pain

(Lisi-Baker) If Vermont is going to say this is going to be our response to unbearable pain, let's remember that VCIL and other organizations work with a lot of people who are in a great deal of pain who are not terminally ill. Pain is a part of their daily life. Their chronic pain is not being treated effectively and this bill does not address their needs at all. These people are not looking for death. They're looking for effective pain management. Why isn't the same amount of money that's being spent on lethal medication to hasten death being spent to promote a quality life for people who are living every day with chronic and often unbearable pain? Let's look at pain throughout the lifespan and how we can lessen its impact on Vermonters quality of life.

Support Living Well, While Dying

(Lisi-Baker) Stephen Kiernan, a Vermont reporter who has just written a book on what it is like to die in America, says that the art of dying well is the art of living well. This bill creates a way for death to be hastened to avoid disability, family stress or pain. It leaves a lot of unanswered questions and leaves out many necessary partners. Let's create a Vermont approach to end of life care that asks, "What does it take to support living well while dying" and one that uses a partnership between citizens, lawmakers and providers to make it happen. That is the only way to create real solutions to the underlying problems behind this campaign.