NEWS

Sides discuss NY proposal for aid in dying

Patti Singer
@PattiSingerRoc
Hospice volunteers caress the hands of a terminally ill patient in Lakewood, Colorado.

To some, legislation that would allow a terminally ill patient and that person’s physician to talk openly about a lethal dose of medication is aid in dying.

To others, that same law would legalize assisted suicide and put already vulnerable people in mortal danger.

Is it one, the other or both?

Two groups have scheduled local forums on the topics.

On Saturday at St. John Fisher College, the St. Thomas More Lawyers Guild and several other groups will lay out the argument against the proposed legislation.

On March 13 at the First Unitarian Church on South Winton Road, Interfaith Impact of New York will host speakers on both sides of the issue.

Dr. Timothy Quill, left, and Diane Coleman,  right.

Diane Coleman, who holds a law degree and founded the national disability rights group Not Dead Yet in 1996, is scheduled to present at both forums. Dr.  Timothy Quill of the University of Rochester Medical Center is scheduled to speak at the Interfaith Impact event.

Opposing the aid-in-dying bill

“I think there is a very strong alliance of different segments of society that are really concerned about the danger of legalizing assisted suicide from the culture we have today,” Coleman said. “Policy makers have to really consider not only the idealized case that proponents put forward on assisted suicide but the real danger that affects so many elderly, ill and disabled people in this society and be sure that the protection that current law offers are still in place to benefit everyone.”

Here are excerpts from a conversation with Coleman:

What are the main concerns of people who are opposed to aid-in-dying legislation?

I don’t think I speak for all (opponents), but the disability community's core message is that if assisted suicide is legal, some people’s lives will be lost due to mistakes, coercion and abuse, and that’s an outcome that can never be undone.

There’s inherent discrimination in assisted-suicide laws. Most suicidal people receive suicide prevention. Assisted suicide laws would carve out an exception to that, and that exception would apply to people who are elderly, ill, disabled, and those are devalued groups in society. ... Assisted-suicide laws would say, 'these certain people, we’ll not only agree with their suicide but give them the means to carry it out.' We’re saying it comes down to social justice. Equal rights means equal suicide prevention.

Isn’t this a matter of the individual’s right to choose?

We agree that people have the right to refuse life-sustaining treatment. We do think it’s important that that be based on informed consent, that there be protections against health care providers that overrule people who want treatment. We’re also concerned about (a health care proxy) decision being based on the choice of what the person would want if the person were able to speak for themselves.

You should have the choice to get all the pain relief that you need in order to not have any physical pain. You should have the choice to get all the home care you need so you don’t have to feel like a burden on your family or friends.

People do have the choice to commit suicide because suicide and assisted suicide are not exactly the same. It’s the discrimination that’s inherent in assisted suicide that is our concern. But assisted suicide needs to remain illegal because of all the dangers the public policy of assisted-suicide creates of mistake, coercion and abuse. We think everyone deserves suicide prevention no matter how old, no matter how ill, no matter how disabled.

What’s the difference between stopping or never starting treatment and asking for help in dying?

With withholding and withdrawal of treatment, you still have to die from an actual condition that is currently diagnosed. With assisted suicide, the person will die whether it’s an accurate prognosis or not.

I can see why it seems similar, but the intent of the health care system cooperating in your refusal of treatment, the system still is trying to provide palliative care, to make you comfortable to do the best they can within that parameter. When it’s facilitating your suicide, that’s an intent to kill.

Can you see any benefit to terminally ill people who believe they are ready to die being able to ask their doctor for help?

The way the law is written, it’s based on an idealized view that everybody has a good doctor who understands palliative care and that everybody has a loving family and that neither the health care system nor family would ever steer the person in the direction of assisted-suicide. But that’s not reality. There are cost-cutting pressures that prevent them from getting the health care they need. One in 10 elders experience abuse. So the risks of mistake, coercion and abuse when assisted suicide is legal are simply too great.

What about the issue of severe pain?

Nobody should be in pain, we agree with that. Palliative care can take care of all pain.

It’s really not about physical pain. If you look at Oregon reports, about reasons people want to commit suicide, the reasons are things like feeling like the person has lost their autonomy, they’ve lost their dignity, they can’t do the things they used to do. They feel like a burden on their families. Those are psychosocial reasons that relate to the disability that people have when they have an advanced stage or chronic condition.

You’re saying assisted suicide. Proponents use aid in dying. Are they the same terms?

Assisted suicide includes physician assisted or other. Physician-assisted suicide is the term in the bioethics arena and it’s in the literature. Aid in dying is the public relations term to make it sound more palatable and make it easy to conflate with palliative care and other support given to terminally ill people.

Our society has a feeling about suicide and most important a commitment to suicide prevention as a concept. Yes, people commit suicide but if someone comes forward and says I want to commit suicide, then as a society we respond by saying, ‘How can we help you? We want to support you.’

Supporting the aid-in-dying bill

In 1991, Quill wrote an essay for a medical journal in which is he described his care for Diane, a terminally ill woman. He has since written numerous articles and books on end of life care. He is scheduled to present at the Interfaith Impact session.

“Whether or not this practice is legalized, seriously ill patients are asking us to talk about it, they’re asking us to consider it,” said Quill, founding director of the palliative care program at URMC and a board-certified palliative care consultant. “Not all of them but a substantial minority would like to have this option. I think we have to try on their behalf to come to grips with that.”

What follows are excerpts from a conversation with Quill:

Why do people with a terminal illness want to end their lives?

Some of it has to do with severe symptoms. I would say that’s not the majority. The majority is people who are tired of dying. It’s going on way too long for them. The kind of debility and weakness that accompany it, particularly for people that are used to being in charge of their lives, is very, very, very hard. Some of those people want to talk about what options they have to accelerate the process.

What would be the advantage of a law that allows aid in dying?

You would have a conversation with your doctor to make damn sure you were sure about this and make sure you looked at all the alternatives. If you’re in a secret environment, you’re doing this on your own with an advocacy group. Not that doctors are always great. But doctors have a lot of experience in their evaluation of people who are really sick. In a secret system, if you have an evaluation you have to have the right doctor that’s willing to keep a secret. You want this to be the most forthright conversation you’ve ever had.

If we legalize this, are we at the top of a slippery slope?

The fear is that this is too easy or that patients could be coerced to do this. I do acknowledge that people are afraid of that, especially people in the disabilities community. Although I understand that fear, I think the best protection is an open process. We want to make sure the patient is well-informed, they’re not suffering in ways we could otherwise relieve.

The protections are that you have people being evaluated out in the open. You’re supposed to document why the person is bringing this up, what are the things that you’ve tried. From my point of view you should have a second opinion from a palliative care person.

Have you said no?

Many times. A lot of people have come to me over the years because I’ve talked about this. Most of them in conversation just were scared and wanted to know there could be options. Most of them needed palliative care, they needed good pain and symptom management and support. They wanted to know there could be options if they got in a bad spot.

What is palliative care?

Palliative care came out of the hospice tradition. Hospice is a kind of palliative care that is delivered to people who are terminally ill, who are working on pain and symptom management for the time they have left. Palliative care moves that process way upstream. So that you can get good pain and symptom management and added support from the time of diagnosis.

Are euthanasia, physician aid in dying and physician-assisted suicide all the same thing?

You can make an argument that morally they are in the same ballpark. Euthanasia and assisted dying are different, technically. With assisted dying the physician provides the means, the medication, but the patient takes it by his or her own hand. (In) euthanasia, the physician not only provides the means but administers the drug.

The language depends on where you are on the debate. If you think this should be permitted you are going to say this should be called physician aid in dying or physician-assisted death because it describes what it is. If you’re an opponent, you’re going to want to call it physician-assisted suicide because you want it to be considered suicide.

If people can withdraw treatment and doctors can sedate someone to the point of unconsciousness, why have a law to aid somebody in their dying?

If people are dying and suffering in severe ways, we can provide progressive amounts of sedation to escape the awareness of that suffering. In the end, it may be complete sedation if that’s the only way you can provide an escape. For some people, being sedated to unconsciousness so you can then die of dehydration seems absurd. It is not meaningful.

What’s the difference between someone who wants to stop treatment or not even start treatment and having a physician aid in that person’s dying?

Most of the time when we take someone off a ventilator we know they’re going to die. I have to own up to my participation in the process. And my participation is the timing of their death. If I did it without their permission, that would be homicide. … Patients who are awake have to come to grips with the fact that they’re not going to make it. Do they want to die? Not really. They just don’t want to keep living on a ventilator.  Are they committing suicide? They don’t see it that way. If they could live in different circumstances they would, to a person, take life every time. (They) just don’t want to live the way (they) have to live. That’s what the issue is.

PSINGER@Gannett.com

If you go

Assisted Suicide Conference, with discussion of legal, medical and ethical aspects of assisted suicide. Presentations by: Ryan T. Anderson, Heritage Foundation, Washington, D.C.; Wesley J. Smith, Discovery Institute, Center for Science and Culture, Seattle, Washington; Burke Balch, Powell Center for Medical Ethics, Washington, D.C.; Diane Coleman, disability rights advocate, Rochester; Sister M. Peter Lillian, Avila Institute of Gerontology and Palliative Care, Albany. Followed by panel discussion.

When: 9 a.m. to 4:30 p.m., Feb. 20

Where: Basil Auditorium 135, St. John Fisher College, 3690 East Ave., Pittsford.

Cost: $25 per person. Optional lunch, $15 per person.

For more:  Call (585) 924-3473.

Death with Dignity: Compassionate or Unethical? Presentations on both sides of the issue by: Corinne Carey, New York state campaign director, Compassion & Choices; Diane Coleman, president and CEO of Not Dead Yet; JJ Hanson, president of the Patients Rights Action Fund; Dr. Timothy Quill, Thomas and Georgia Gosnell Distinguished Professor in Palliative Care at the University of Rochester School of Medicine and Dentistry. Followed by Q&A. Sponsored by Interfaith Impact of New York State.

When: 2 to 4:30 p.m., March 13.

Where: First Unitarian Church, 220 S. Winton Road.

Cost: Free. Donations accepted.

For more: Call (585) 442-5111.