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Webinar: Addressing Death with Dignity in Massachusetts

Webinar Description: In November 2012, Massachusetts voters faced a ballot referendum on the Massachusetts Death with Dignity Act – whether individuals with terminal illness should be legally able to seek help in ending their lives. This is a complex issue with multiple perspectives and the Massachusetts Coalition for Suicide Prevention did not take a position to support or oppose the proposed legislation due to “our membership representing diverse and divergent views on this Initiative Petition.” This workshop will briefly present the Death with Dignity Act and facilitate a structured dialogue represented by the perspectives of webinar participants about how to better understand the complexities of this issue.

Webinar Duration: Approximately 113 minutes

Brandy Brooks: Good afternoon and welcome to the Addressing Death with Dignity in Massachusetts webinar. My name is Brandy Brooks and, aside from being the moderator this morning, I am a Contract Manager for the Massachusetts Department of Public Health Suicide Prevention Program, the sponsors of today’s webinar.

Before I introduce our presenters, Ken Norton and Ann Duckless, I would like to go over a few housekeeping issues. First, to join the video portion of the webinar, go to and under ‘Participant, Join a Conference’ enter access code 6245494. On the next screen, you will be prompted to enter your name and email address and then click the green ‘Register for this meeting’ button.

Second, to join the audio portion of today’s webinar, please dial 1-866-740-1260 and enter the passcode 6245494. Again, dial 1-866-740-1260 and enter the passcode 6245494.

Third, should anyone experience any technical difficulties with either the audio or video for this webinar, please dial 1-800-843-9166. Again, that’s 1-800-843-9166 and a ReadyTalk representative will be more than happy to help.

Lastly, all telephone lines are muted except mine, Ken’s, and Ann’s. So, please use the chat function located in the left corner to type in any questions you may have. Given the number of participants, Ken, Ann, and I will do our very best to answer as many questions as possible as we go along and at the end of the webinar during the question and answer period.

Now that I’ve gotten that out of the way, let me introduce our presenters for this afternoon’s webinar, Ken Norton and Ann Duckless.

Ken Norton has been involved with National Alliance on Mental Illness, New Hampshire Chapter, or NAMI New Hampshire, for many years. In May 2011, he was appointed Executive Director by the Board of Directors. His previous role with the organization was as the Director of the Connect Suicide Prevention Project, a designated national best practice program in suicide prevention, intervention, and post-vention. Ken has participated in the development of New Hampshire’s state suicide prevention plan and was instrumental in the passage of legislation which established a suicide prevention council. Ken has more than 30 years’ experience in nonprofit agencies, most of it in various capacities within the mental health service delivery system.

Our second presenter this afternoon is Ann Duckless. Ann brings over 20 years of experience in substance abuse prevention and treatment to the Connect Project, which I mentioned earlier. Ann’s very professional work experiences include teaching at the high school and college levels, inpatient and outpatient counseling for substance abuse addictions, youth prevention community work at the statewide level, and a unique systems perspective in dealing with public health issues. Trained as a cultural competence trainer by the Anti-Defamation League, Ann embraces and promotes cultural sensitivity to issues of gender, race, ethnicity, language, religion, disability, and sexual orientation and identity.

Now that I’ve introduced both of our presenters, I would now like to go ahead and turn it over to them. Ann and Ken, are you there?

Ann Duckless: Yes, we are.

Brandy Brooks: Okay. We can hear you.

Ann Duckless: Thank you. Thank you, Brandy.

Ken Norton: Thank you all for participating and I hope this will be an interesting discussion. We will not be opening the phone lines for conversation but you can use the chat function on your computer and feel free to engage us in chat at any point in time with a question and we’ll take them as we’re rolling along.

I’d like to start by just saying that this was a follow up to a presentation that was held this past spring, in May, at the Massachusetts Suicide Prevention Conference and I’d like to thank Alan Holmlund and the Mass Department of Public Health for sponsoring this conversation.

We have done a lot of work nationally and with Massachusetts around the issue of suicide prevention and ethics and some of that touched on some of the issues that we’ll be touching on today when we look at this issue of physician-assisted suicide or death with dignity and the Prescribing Medication to End Life ballot question that Massachusetts will be having.

This follows some of that and, based on the work that we’ve done and the conversations that we’ve had, trainings that we’ve done in Massachusetts, the Mass Department of Public Health had asked us to facilitate this webinar.

Just a little bit at the outset to say, too, that I think as you all know that this is a ballot question that will be on the ballot on November 6th and it is a binding referendum, which means that, if it passes, it will go into effect. Signatures have been collected during the past year and validated to bring it to a ballot initiative and there is a certain percentage of signatures that needed to be collected and the legislature had a couple of points of time during that time when they could have brought a bill forward but they chose to let it go to the ballot initiative. That’s where we get to today.

Ann Duckless: Ken, can I just ask, hopefully everybody can hear us. I know one person was having difficulty hearing us so, hopefully, our end of things the volume is up loud enough.

As Ken said, if it is a ‘yes’ vote in Massachusetts, then that will take effect on January 1, 2013. Ken and I, as well as your neighbors to the north here in New Hampshire, are very excited to see what the voters of Massachusetts will decide on this issue.

So, are we ready to move forward?

On slide 4 -- I guess I’ll just say the slides as we go along just so that we don’t have any difficulties with the technology -- certainly the Massachusetts Department of Public Health and the Massachusetts Coalition for Suicide Prevention want to have this disclaimer about the fact that this information and the varying perspectives that Ken and I will be speaking about are not represented or endorsed in any manner by these two entities. Certainly, this webinar is being held for the members of the larger Massachusetts community so that folks can have their personal voices and votes heard and registered and we wanted to inform those voices and votes. NAMI New Hampshire also refrained from taking any position on this issue. We hope that this is a helpful webinar in terms of the various places and research that we have called for the content.

Slide 5 is talking about the agenda. Ken will be talking about historical perspectives, actually from way back in philosopher times to today and bringing us up to speed on all of the different historical figures who have contributed to this discussion that we’re having today on October 26, 2012.

Then, he will also be talking about milestones with the same kind of perspective. Here we are in 2012 but a lot has happened over the years to get us to this point. Then we will talk about, very briefly, ethics in death with dignity and some of the ethical principles, certainly that clinicians, social workers, any kind of healthcare provider would be faced with, in terms of this issue.

Ken will talk about the Oregon and Washington laws because those are the only two states currently in the United States where death with dignity is legislatively enacted. Then, I will talk about the outline of Massachusetts Question 2, Prescribing Medication to End Life; what will be in front of Massachusetts residents in a couple of weeks. Then, Ken and I will be talking about the pros and the cons and certainly enlisting your discussion on these points.

Definitely our ground rules, and it’s a little harder to enforce ground rules by technology, but we really do encourage all of us to have respect for the diverse opinions that folks have around this issue. It can be a very polarizing issue. It can be a very controversial issue, based on personal experiences, personal values, and professional expertise and ethics. We recognize that and we respect that and we’re hoping we can all abide by that. As Ken earlier mentioned, we don’t have the option of phone lines for today’s webinar but we really do encourage comments from you. We encourage questions from you, thoughts, reflective questions.

We do have some polling questions for you that we will be doing just to get a sense of -- so far 26 people have joined us and we want to get a sense of what people are, in terms of their professional capacity. Then, presence of media, this is something we always like to ask in person at any suicide prevention function of this nature that we do and we’re not sure if any media are on. If any media are on, we would certainly appreciate your letting us know via that chat box. In the interest of that respect for diverse opinions and experiences around this issue, we do ask that folks are gentle and that folks are respectful in their chat writings because that will help all of us proceed forward in a good manner.

The next slide, slide 7, is a slide that we would ask -- we tried to do this as interactive as possible, not an easy task to do, but we’d like folks to indicate whether you are an educator, a faith leader, a healthcare provider, a legal advocate, a mental health provider, a public health provider, a policy leader, a social services provider, a veterans’ service provider, or something else that is not listed. If every one of you would be able to check one of those circles so we can see what our membership, thus, far looks like on the webinar. We’ll just give a few seconds to do that. 21 people have registered, 22, 23, okay.

Feel free to jump in, Ken, if you want, but we have 8 ‘others’ but then we have 6 social services providers and 3 mental health providers and then we have 1 policy leader on, that’s awesome. We have a healthcare provider and two educators. Wonderful. Welcome all.

Ken Norton: If folks that indicated an ‘other’ wanted to indicate what field they represent or what profession they represent we can all them out to other folks.

Ann Duckless: Again, you have to use your chat box for that. Thank you, that’s good. Oh, that is great.

Ken Norton: There are a bunch of people from the Educational Development Corporation that are public health providers and technical assistance providers and educators. We have a researcher, person doing research and evaluation. We have another person doing specifically suicide research. We have an individual who is an educator in Wisconsin majoring in Thanatology.

Ann Duckless: Which is the study of death and dying.

Ken Norton: Grief.

Ann Duckless: Yes. Correct us, Janet, if we’re wrong on that but we don’t want to use words that people might not be familiar.

Ken Norton: Public policy folks and, of course, our good friends from the Merrimac Valley Samaritans as well as a crisis line supervisor involved in suicide prevention.

Ann Duckless: Oh, and we have more. This is great. Thank you for your chats. This is going to be quite exciting.

Ken Norton: A NAMI family advocate, a person who studied with Ed Shneidman who was the founder of the American Association of Suicidology, public policy folks, a social work student.

Anne Duckless: And Janet has let us know that Thanatology is death, dying, bereavement, and all elements of death and dying. Thank you, folks. This is wonderful plate of folks that are with us and we hope to learn from one another as much as the information that Ken and I are going to share with you.

On slide 8, this is one more poll before we go onto our more didactic section and we ask that you fill in your job setting: assisted living/nursing home; emergency crisis call center, we know from the chat box that we have somebody, at least one person from that setting; home health; hospice; hospital or health care facility; mental health practice; and something else not listed above. Again, if folks want to -- yes we have nonprofit agencies listed and universities. Thank you for that, Katherine. Statewide suicide prevention coalitions, that’s great. Human services. Obviously, Ken and I, you may be asking yourself, “Well, why are they interested in job setting?” Because we really wanted to know whether folks who are working in an assisted living/nursing home capacity or hospice would be on this call today because, certainly, we’re talking about end-of-life issues here.

Ken Norton: A couple folks from elder services, a lot of people from community-based organizations, nonprofits, and several folks from university settings as well.

Ann Duckless: Great. Keep those chats coming. It’s like multi-tasking for -- I don’t know. I can’t speak for Ken but I can say it’s multi-tasking for me, reading and talking at the same time.

Now we’re going on to slide 9, talking about terminology.

Ken Norton: I just want to acknowledge what we said before about respect for diverse opinions and that, like other sensitive subjects, the language that we use can be very loaded or challenging and different sides take very polarizing views and the language indicates your side or your preference. We want to be clear that we’re going to accept all language today; death with dignity, assisted suicide, physician-assisted suicide, prescribing medication to end life, or even euthanasia although we want to be clear about the terminology for euthanasia; that it can really be in two forms. Euthanasia may be to benefit the individual or to the state and it can be voluntary as well as involuntary. For the purpose of our discussion today, we’re going to assume that any use of that term is for an individual and under voluntary circumstances.

Ann Duckless: Thank you, Ken. The other thing I want to mention that Ken and I are seeing in the chat box. I just want to say this as a note to Massachusetts residents on the call today. There are a lot of people around the country who are looking at this initiative with interest. I just want to say that I think this is an important initiative coming up in Massachusetts, not just for Massachusetts residents but I think for the whole country, as well as suicide prevention as a field.

Going on to slide 10, these are the three learning objectives that we hope to impart with you today. Ken’s really going to talk a lot about the historical perspective, in terms of, certainly many of the famous figures, perhaps, in the past that had some contribution in some manner to this discussion as well historical milestones that those of us who have been around for while will certainly recognize some of those major landmark events or rulings in the courts.

We also want to talk a little bit about the ethical concerns related to end-of-life issues and whenever you’re talking about death with dignity, we do believe that ethics comes into that. With regard to the Question 2 coming up in Massachusetts, Prescribing Medication to End Life, we want to talk about the experience that Oregon and Washington have had and how that may bear on the Massachusetts experience should they decide to pass this.

Ken Norton: As we look at the historical perspectives, I’m going to read a few quotes from different people but I think that part of the reason that we include this, and a lot of folks were sort of like, “Well, let’s get right to the heart. Let’s talk about what’s happening in Massachusetts.” But, I think that it’s really important to understand the context of how we got to where we are, both historically and in more modern times. That’s why it’s important.

I would start by saying that Socrates, who was given the option of exile or suicide after he was convicted, essentially, of treason he said -- and Socrates lived between 469 and 399 B.C. -- he said, “The hour of departure has arrived and we go our ways. I die and you live. Which is better? God only knows.” In many ways that raises some of the context of suicide in general and life and death in general as a question which comes up when we’re talking about individuals who are terminally ill.

Plato, a little bit later, 50 years later, said -- and this is a very graphic quote, “The god of healing did not want to lengthen our good-for-nothing lives. Those who are diseased in their bodies, physicians will leave to die and the corrupt and incurable souls they will put an end to themselves.” Even before the birth of Christ, people were talking about these issues and the challenges of people with severe medical conditions, in terms of whether they should live or die.

Nietzsche, who lived in the mid-1800’s to the 1900’s, said, “The invalid is a parasite on society. At a certain state, it is indecent to go on living. To vegetate on in cowardly dependence on physicians and medicament after the meaning of life, the right to life, has been lost ought to entail the profound contempt of society.”

Ann Duckless: Can you kind of summarize that Ken, that saying that Nietzsche just said?

Ken Norton: Essentially, again, that it’s really almost contemptuous of people that are gravely ill and essentially saying that they're a drain to society and that they should not continue to live and that the physicians’ resources should go elsewhere.

Edwin Shneidman, who we mentioned and we have one person who studied for many years under Shneidman, said that, “Suicide prevention is like fire prevention. It’s not the main mission of any institution but it is the minimum ever-present responsibility of each professional and when the minimal signs of possible fire or suicide are seen then there are no excuses for holding back on life-saving measures.” I’m sure that Shneidman would be very happy, if he were still alive, to see that there are some folks and some organizations represented on this call whose mission is exclusively around suicide prevention. The point is that Shneidman felt that it’s something that we all do in society; that the importance of life and helping to preserve life and prevent suicide is a shared responsibility.

Thomas Szasz, who many of you may know who died very recently, a couple months ago and who was a psychiatrist who pioneered some very different thinking about individuals during the 1960’s and that whole reflection of the times that we live in. Szasz said, “Suicide is a fundamental right. This does not mean that it’s morally desirable. It only means that society does not have the moral right to interfere.” Again, a very profound sort of bookend from Shneidman, who was saying that, as a society, that we should everything in our power to prevent suicide; Szasz saying that we might not like suicide or believe that it’s okay, but as a society, we have no right to interfere.

Ann Duckless: You can see, in that historical perspective picture, that is the fatal freedom.

Ken Norton: Dr. Kevorkian said, and I think we’re all familiar with Kevorkian who was convicted at one point of being a physician who had assisted suicide and really in many ways some very complicated issues that he raised because he dealt with terminally ill people but then also dealt with people that weren’t terminally ill but maybe were in pain or wanted to die and that raised some very challenging issues for us as a society and the states in which he operated in and their laws. Kevorkian said in 1994, “If you don’t have liberty and self-determination you’ve got nothing. That’s what this country is built on and this is the ultimate self-determination, when you determine how and when you’re going to die when you’re suffering.” Very important sort of perspective and many of these issues really came into the forefront for us, as a society, as a result of Dr. Kevorkian and his very high-profile engagement around this issue.

Ann Duckless: I also think that Dr. Kevorkian’s work in this area, I think that that also for many people that is part of the controversy of this area because, during those times, there was a lot of legal work about getting Kevorkian and there was a lot of people who were very opinionated one way or the other about whether his practices should continue or should be disbanded. During those late ‘90s when this was happening, I think that that really added great controversy to this issue; not good, bad, or indifferent. It just added controversy to this issue because it certainly put the issue front and center for all of us, as Americans.

Ken Norton: We have a couple Shneidman fans. Our person that has studied under Shneidman indicated that they have, hopefully, a paper forthcoming about Shneidman’s theory of psychological pain and applying it to the issue of physician-assisted suicide. We have another participant who’s really excited that there is a student of Ed Shneidman’s on the call.

Ben Okri is an Nigerian poet and writer and he’s living, was born in 1959, and he said that, “The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love, and to be greater than our suffering.” For many folks, particularly in the Christian tradition, suffering is an important part of who we are as people and, obviously, the experience that Christ had of suffering on the cross.

Pope John Paul II said, “A man, even if seriously sick or prevented in the exercise of his higher functioning is, and will always be a man. He will never become a vegetable or an animal,” the Pope said, “The intrinsic value and personal dignity of every human being does not change depending on their circumstances.” That was in 2004. Remember that during some of these times there were important cases and we’ll talk about them for people that were determined to be brain dead and families had petitioned courts to take them off life support.

Ann Duckless: Anything else you want to say about these historical perspectives, Ken?

Ken Norton: No.

Ann Duckless: No? Okay. If anyone has any kinds of comments or questions, please chat them in. We’re going to go on, approaching the milestones.

Ken Norton: The whole discussion around death with dignity or physician-assisted suicide would be incomplete without acknowledging the important aspects about culture and religion as well as suicide. These are very complex and they vary from culture to culture and even within religious traditions there are some different interpretations. But, essentially, they are many religions and historically they believed that it was a moral imperative to protect life and that the sanctity of life, only God has control of a given life. Particularly within the Judeo-Christian heritage, suicide was historically looked at as a sin.

On the other hand, some cultures actively practice senicide where people who are older and becoming incapacitated would, essentially, end their own life or they would be killed. The example of that which is familiar to us is with Inuit elders left to die, although this appears to be somewhat controversial. It happened. There are some things that I’ve read that said that it happened very infrequently but it is one of those examples. Certainly other examples we see about honorable self-inflicted death are hari-kari and suicide bombers in interpretations of the Muslim religion and in martyrdom. So, very important to think about those impacts of culture and religion and how they inform some of our beliefs about suicide and end-of-life issues.

Ann Duckless: Also, I would add that this is also where personal values come in to a great extent. That’s why there can be such a vigorous debate around this issue.

Okay. Going on to the Hippocratic Oath, slide 13.

Ken Norton: One of the things that’s very important is that the Hippocratic Oath came from the time of Plato and Socrates. There’s a piece of it that say, “I will not give a lethal drug to anyone if I am asked, nor will I abide such a plan and similarly I will not give a woman a pessary to cause an abortion.” And that’s the quote. It was written in ancient Greece times before Christ. It’s been modified continuously over the years since that time, although this particular aspect of it has remained in some form or another.

One of the things that’s very interesting that I learned in researching this is that most doctors do not take the Hippocratic Oath. They may take some form of an oath but different schools practice different pieces or some don’t use it at all. One of the arguments that we often hear is that it’s a violation of the Hippocratic Oath. There may be doctors that took the Hippocratic Oath and certainly feel strongly about that but it’s not something that is universal to all doctors as we tend to think.

Ann Duckless: Now going on to some of those milestones. I think there are 15 or 16 listed here and I’m sure many of us will recognize a number of them.

Ken Norton: One of the things that’s really important to talk about when we’re talking about the modern milestones is to identify that these are post-World War II and the Nazi era. The Nazis took euthanasia and killing and genocide to extreme levels that society had never seen before. While were certainly familiar with the killing of Jews, all kinds of different people were killed; Gypsies, homosexuals, all kinds of different groups that were perhaps marginalized by society. All kinds of medical experimentation was done on folks and on children. So, while these conversations or discussions or thinking about death and suicide and end-of-life issues have been evolving, I think the horror of what the world experienced in the post-Nazi era really kind of put an end to that discussion for a period of time.

The discussion seemed to pick up again in the 1960’s and in 1967 we have the first living will written in Indiana. That was followed in 1968 by a journal article in a medical journal that first used the term irreversible coma and suggested that it might be a criterion for death, in this medical journal.

In 1973 the American Hospital Association -- and this was a huge turning point -- adopted rules allowing patients to refuse treatment. Up until that point in time, patients that wanted to stop eating or receiving treatment were often forcibly treated.

In 1976, we would all probably be quite familiar with the case of Karen Ann Quinlan, where the New Jersey Supreme Court allowed her to be disconnected from life support. Karen Ann Quinlan was somebody who was in a coma and who was registering no brain activity for a number of years and whose family that she would not want to live this way and asked to have her life support discontinued.

Ann Duckless: If people remember the Karen Quinlan case, that was a highly-controversial issue in the nation because even family members among themselves were torn about whether to take her off or keep her on that life support. That really fueled this fire, this issue.

Ken Norton: The same year, California allowed the withdrawal of life-saving medical treatment when death was imminent. Really in a very condensed period of time there, a three-year period of time between when the American Hospital Association allowed people to refuse treatment and when California allowed the withdrawal of life-sustaining treatment to be okay.

That was followed by, in 1980 the Hemlock Society was formed. The Hemlock Society is a society that promotes the right to die by suicide. Also in 1980 Pope John Paul put out a declaration on euthanasia and the Church’s stance on that, essentially opposing it and talking about the sanctity of life.

In 1986 the Universalist Unitarian Church issued a right to die with dignity. Again, in a very short period of time two churches with very opposing views and the UU Church saying that people should have the right to determine their death and to die with dignity.

In 1990 Dr. Kevorkian did his first assisted suicide and then followed in 1994 by Oregon passing their death with dignity law.

In 2000 the Netherlands legalized euthanasia; again, a very challenging piece because that euthanasia under the Netherlands was both voluntary and involuntary.

In 2006 the U.S. Supreme Court upheld the Oregon law.

Ann Duckless: I also want to point out that, just in case people don’t know, the Hemlock Society’s current name is End-of-life Choices.

Okay. We have five polling questions that we weren’t able to put on one slide so we have one polling question per slide for folks.

Have you ever assisted a client or family member in establishing a living will? If you could check yes or no that would help us know, in terms of, again, our participants and what kind of experience we all bring to this issue.

We’re about split. We are. We’re just about split here. We have half that have indicated that, yes, they have assisted in a living will and, no, they have not. Thank you. Oh, sugar! That has a graph. So people see that graph? That’s great. Okay.

Alright. Next slide, slide 16; have you ever assisted a client or family member in developing a DNR order, or a Do Not Resuscitate order. Have you ever assisted a client or family member with the DNR order?

A greater proportion of us have not assisted. I think it comes out automatically, I think. Does it? Oh, I think she told me -- okay, there we are. So, a greater proportion of us, while we were split with the living will, a greater proportion of us have not been involved with a DNR order.

Do you personally have a living will? Do you personally have a living will?

Because, I’ll tell you, these issues are certainly touched on for all of us. The survey would show that most of us, double of us, do not have a living will. There we go. One out of two of us do not have a living will.

The next question, two more, this is the next to the last. Have you been directly involved, either personally or professionally --and if you click on that question with your icon, the whole question will come up -- in the removal of life support or withholding medical treatment or nourishment? Have you been directly involved, either personally or professionally, in the removal of life support or withholding medical treatment or nourishment?

Again, the majority of us have not been involved in that kind of decision or situation. Again, what Ken and I are pointing out here is that our life experiences certainly add to our perspectives on this issue.

I guess we did get through all the polling questions. So there we are, Ken.

Ken Norton: Currently, two states have assisted suicide and physician-assisted suicide or death with dignity. Those are Washington and Oregon. As I mentioned before, Oregon passed in 1994. One other state, Montana’s Supreme Court ruled that physician-assisted suicide is not against public policy but, to this point in time, they have not gone through and formally allowed for physician-assisted suicide. That means that the other 47 states, and there have been numerous other legislation attempts in other states and even ballot initiatives in other states, but all those other states have some type of law prohibiting assisting someone in the ending of his or her life.

Ann Duckless: New Hampshire has this on the books as well. This law, on slide 20, is the Massachusetts General Laws, Part II, Title II, Chapter 201D, Section 12 and it’s listed as Suicide or Mercy Killing. “Nothing in this chapter shall be construed to constitute, condone, authorize, or approve suicide or mercy killing or to permit any affirmative or deliberate act to end one’s own life other than to permit the natural process of dying.” And we put in the website on that slide below.

On slide 21, we ask folks for one more polling question. Are you currently involved in some aspect of suicide prevention work? Yes or no?

My guess is a preponderance of us on the call are involved in suicide prevention work. Thank you, Thank you for joining us.

On slide 22, these are the three principles for ethical decision making that really come into play whenever an ethical dilemma is being faced by a clinician or any other professional; the ‘Do no harm’, where we’re always trying to minimize or prevent harm; ‘First, do not be silent’, which was from Socrates; and then, ‘Do good’, where we are trying to do the greatest good possible.

Do you want to say anything?

Ken Norton: Sure. We’re not going to spend a lot of time getting into ethical pieces here. We will talk about a couple of ethical components but I think one of the things that’s important for people to recognize under these maxims is; in whose opinion is it? Because ‘do no harm’ from the doctor’s perspective may be very different from the patient’s perspective or ‘doing good’ from those different perspectives or from the family perspective. They're not really hard and fast and that’s something that I think is really important to think about as we move forward.

Ann Duckless: Julie, thank you for pointing out that, even though a preponderance of our listeners today and participants are working in the field of suicide prevention, there are others who are not and we thank you for joining us as well. Any time you’d like us to recognize you for a comment or a question, please text it to us.

The next slide is talking about the related ethical components to the three principles that we just talked about. These certainly come into play with Question 2 and any Death with Dignity Act; the dignity and worth of the person, the self-determination of the individual, and certainly informed consent. Ken will be covering this in the Oregon and Washington laws but certainly, the Massachusetts Question 2 has really quite clearly covered the issue of informed consent and self-determination.

Ken Norton: The other thing that’s important to consider with this is that each of these really have several dynamics involved, in terms of they can be from the perspective of the physician or the healthcare provider or they can be from the perspective of the patient involved. Again, whose opinion are we asking about dignity and worth of the person? How do we reflect on self-determination? And what about informed consent? As Ann said, some of that is very clearly specified in these different aspects of the law but they are important considerations and would certainly reflect that people that are part of a professional association or have a licensure that you may things in your code of ethics that specifically refer to instances of self-determination or dignity or worth. I would say, for example, that all three of these are covered in my code of ethics as a social worker and would point out that, particularly in the area of self-determination, that the code of ethics for social workers it goes up and to the point of where there might be imminent harm involved to the person or to somebody else.

Ann Duckless: Slide 24 is a quote from Anthony Salvatore, which is about clinicians equating what’s legal with what’s ethical. In most cases the law sets only minimum standards of conduct and ethics demands more. So, we put that in here because we really do want people to keep in mind that what is ethical may not be legal, vice versa. But, just to keep in mind the power of legislation and the power of ethics.

Anything you want to say on that?

Ken Norton: No. I think this is just something that often times gets misunderstood or misinterpreted, particularly because of the power of the courts and the power of law, but we should never lose sight of what ethical standards may be.

Ann Duckless: Ken’s going to get into talking about the Oregon and the Washington criteria now.

Ken Norton: As I mentioned before, in 1994 Oregon was the first state to develop an assisted suicide or death with dignity law. The requirements of that law are that the person be 18 years of age or older; that they be a resident of the state of Oregon; that they be capable, meaning that they are able to make and communicate healthcare decisions; and they have to be diagnosed with a terminal illness that will lead to death within six months. The criteria for Washington State is very similar and that was signed into law in 2008.

Ann Duckless: Next slide.

Ken Norton: Among the Oregon suicide deaths, and this may not be current. This was current as of the beginning of the year, but 92% reported a decreasing ability to participate in activities that made life enjoyable. 87% reported a loss of autonomy. 78% reported a loss of dignity. 80% were believed to have cancer. 78% were between the ages of 55 and 84 with a median age of 72 years. 98% were white. 60% were well-educated and almost all had health insurance.

Those are important criteria because one of the things that was in Oregon, a couple of the arguments that were made very strongly in opposition to this law was that it would discriminate against people with low incomes and people without health insurance or means. What we’ve seen is that, in fact, those are the people who are more often choosing the option, are the people who are well-educated and the people who have health insurance.

Ann Duckless: We have a question about Oregon requiring an evaluation by a psychiatrist.

Ken Norton: I don’t believe so, although I believe it does say that the physicians have to certify that the person is competent to make healthcare decisions.

Ann Duckless: That evaluation would probably take place if there was any kind of belief that a psychiatric or a psychological impairment might be affecting that ability.

Ken Norton: Again, this is not current but was current through the end of 2011. I think this is very informative in that what we’ve seen in Oregon and to some extent, less so in Washington, is that a number of people, particularly in the early years went and saw a physician and were given prescriptions of a life-ending medication but they chose not to go that route. The number of people that actually died by suicide using the medications they had received is much smaller.

That number does seem to be growing a little bit and I think some of it is that, as society, it is more acceptable or people are understanding it differently than they understood it before but it is an important aspect. I think some of the more recent numbers that I’ve seen out of Washington, from last year, indicate a much higher percentage of people that are seeking out the prescription and then utilizing it.

Ann Duckless: Part of that might be because people are living longer lives as well and medical improvements are coming along so that -- I’m sure the impact of medicine over the years has certainly impacted that as well.

Ken Norton: I think that one of the things that’s really key here is that we’re talking about self-determination and one of the reasons that I think the number for the prescriptions is higher than the self-inflicted deaths is that that is the person taking the self-determination to choose and take control of how and when they want to die to at least have the option. I think we have a quote that elucidates that a little bit.

Ann Duckless: “Having the choice gives me comfort. Just knowing there’s an option, knowing that there’s a choice, this has taken the fear out of dying for me.” This was an Oregon resident with breast cancer who did not take her life and had that death with dignity option.

We also have a message from Katherine stating that, “Only one of 71 Oregon Death with Dignity Act patients who died during 2011 was referred for formal psychiatric or psychological evaluation. I know that question came up so the majority of individuals are not referred for that consultation.” Thank you, Katherine.

Now we have four different arguments. Some are in favor of, and some are opposed to, with what Ken has just covered, prior to us going into the guidelines as outlined for Massachusetts Question 2. These are the four considerations, for pain and suffering; economic considerations; self-determination, which Ken just alluded to earlier; and then, certainly on the other side of the fence, that this would be a slippery slope to legalize murder.

Ken Norton: There may be other arguments that people want to raise and we can discuss them but these are the ones most commonly raised so I’m going to put them out there.

In terms of pain and suffering, on the one side people say that it’s inhuman to allow an individual in pain to suffer for a prolonged period of time. On the other side, people say, “Well, things are really very different now with modern medicine and that palliative care has made great strides in reducing pain and suffering during an individual’s final days.” Those are sort of the both sides of that argument about pain and suffering.

In terms of economic considerations, on the one hand people say that physician-assisted suicide would be based on economic factors and access-to-care issues. As part of that, and we know that there’s different levels that have been stated or different parts in terms of what some of these numbers are, but one of the estimates is that 40% of Medicaid dollars are spent in the last two months of someone’s life. So, this is where we get some of the talk about death panels and those kinds of things. What we know from Oregon is that almost all death with dignity cases had health insurance.

There are already profound economic disparities in healthcare in the U.S. One of the other arguments around that is if we were spending the money in the final days of life instead of spending on people’s final days, if we spent it on pre-natal care that we would be doing a huge benefit to people because of the poor pre-natal care and the subsequent medical conditions that people live with for the rest of their lives or even infant mortality. Those are some of the arguments around the economic consideration piece.

In terms of self-determination, we know that, as we’ve talked about already, that individual freedom to determine when and where to die is a big part of the argument for death with dignity. On the other side are religious or moral or even ethical beliefs that it’s interfering with God’s will and that, as humans, that we don’t have and shouldn’t be interfering with God’s will, that the sanctity of life of when people die is something that only God determines. That’s another consideration.

In terms of the slippery slope to legalize murder, the argument around that is, once the government sanctions killing of any kind, that we really enter into dangerous territory where the State may determine the elderly or individuals with severe disabilities or others should be euthanized. Part of the power of this argument comes from some of those cases in the Netherlands, which I mentioned and won’t go into a lot of discussion about that, but where to say there has not been a clear delineation around voluntary physician-assisted or death with dignity.

Again, the lesson, I think, learned in Oregon is that legalizing suicide for terminally-ill individuals can be successfully structured and restricted so that it has no impact on all the other vulnerable populations. In other words, there’s been no evidence in Oregon or Washington or no movement that it should be expanded beyond this piece of voluntary self-determination.

Ann Duckless: Ken, we have a question from Gavin asking, “Did you say that the majority of Medicaid money is used in the last two years of life?”

Ken Norton: It was up to 40% is used in the last two months of life. There are different figures; we see in the last ten days, whatever. Certainly, we go to, and I think anybody that has been through this a family member or loved one sees that, even when it’s very clear that the person’s days are very numbered, that all kinds of extraordinary medical tests may be ordered.

I know that I can personally speak with my mother-in-law where they wanted to ship her to another hospital to do an MRI three days before she died and she said, “No.” I think that that’s a consideration for people, is around some of those economic pieces and how much money is spent in the final days of life versus how much money is spent around pre-natal or preventative care in the early stages of life.

Ann Duckless: Janet, who studied under Edwin Shneidman, we do have people who are looking forward to seeing the paper that you will be coming out with, in terms of his theory of psychological pain with physician-assisted suicide. People are interested in that.

Anything else on that, Ken?

Ken Norton: No.

Ann Duckless: The next question, we have three more polling questions before I get into the specifics of Question number 2 for Massachusetts. The first is; are you currently working with patients who have terminal illness? Yes or no?

We have a majority of us who do not work with patients with terminal illness. Again, in that chat box, we would love to hear from folks whose professional experience especially lends itself to this discussion and to whether this bill gets passed or not. Thank you for that.

The next question is; do you routinely come into contact with people who have terminal illness, as part of your work? Yes or no? That might sound like the same but it might be something different depending on people’s relationship with patients or with clients.

Just giving people a little bit of time to weigh in there. Again, the majority of us, 80% almost, do not have this type of contact. Again, we’d like to encourage folks to chat us with this experience.

The last piece before we get into the Massachusetts Question 2; have you cared or are you currently caring for a family member in his or her end stages of life?

We’re seeing a much greater affirmative response to this which, again, ads to this discussion. We’re seeing that 65% of us have this kind of experience, or are currently experiencing it, versus 35% of us who do not.

Are we all set to go?

Okay. Massachusetts Question 2, if you’ve looked at the legislation as it’s outlined, you will see that it’s voluntary on the part of the individuals, on the part of the physician, for the healthcare providers affiliated with this, and healthcare facilities involved. The person must be a resident of Massachusetts; -- I must say when I read this, it had a lot similarities to the Oregon law that Ken just covered, although it is entitled differently as Prescribing Medication to End Life -- Must have an illness which will cause death within six months, that’s also comparable to the Oregon law; must have capacity to make own healthcare decisions; and must self-administer medications, meaning the person themself must be the one to give themselves that prescribed medication.

Anything else on this, Ken?

The continued part of this that the request must not be made orally and in writing, that there must be two witnesses to this request and one has to be what is labeled as non-heir, non-family, an non-family member. So, hopefully this aspect really gets at any kind of abuses that might take place because of family estates and wealth and such. The individual must be examined and give informed consent by or to a physician. For the oral request, there is a wait of 15 days. We’re talking some planning here on the part of the person and the healthcare individuals assisting that person; so 15 days wait. Then, 48 hours wait for the written request. This person is encouraged to notify next of kin and the death certificate will list the underlying illness of this person who is requesting this.

Ken Norton: One of the questions that we received is, “How does this affect temporary residents or illegal immigrants?”

It’s a great question and we’re not really clear around that. The intention of the law is that, obviously and I think following the other laws, is that they don’t want folks from other states travelling to Massachusetts for the purpose of ending their life. I’m assuming that the physician would be the one that makes that determination.

I don’t know that there’s going to be a criteria. I’m sure that there would need to be a street address or whatever kinds of things for tracking them. If a physician or healthcare provider doesn’t have an existing relationship with somebody and then they're approached, they may say that they don’t want to be involved and to do that.

Ann Duckless: “What if the person cannot write, Ken?”

Ken Norton: If the person cannot write, I think that there’s a provision in the law that allows them to direct someone else to put it in writing on their behalf and then to have that submitted. I think that the physician has to hear them saying that, has to be a part of that process.

Ann Duckless: “How will this impact life insurance policies as far payout, since this is a state law and not a federal mandate?”

Ken Norton: Given that the criteria is that the death certificate would not say suicide, there doesn’t seem to be any way that it would impact on life insurance policies. Most life insurance policies have a time limit around suicide so it’s not an unlimited thing. It may be for the first year of the policy or sometimes for the first two years of the policy. In other words, they want to protect themselves against somebody who may think they're going to end their life and they take out a huge insurance policy and then a month later die by suicide.

Presuming that, for the most part, that insurance policies wouldn’t be affected by that. I don’t know what kind of documentation would go into a medical record and whether insurance companies might seek that out and then raise an issue around payment. I’m not familiar with that occurring in either Oregon or Washington State but it is a good question.

Ann Duckless: I’m sure that if there is a different language spoken that it would be in that language and that translation in that notarization.

Ken Norton: Sure, again, assuming that it would involve medical translators who are certified or experienced in that area and probably not through a family member or somebody else. Whatever types of key translators would be used in a medical setting would be sufficient.

Ann Duckless: Okay. Keep those chats coming, folks. We have only a few more slides. This one is related to a polling question we just asked. I’m on slide 35. This is a comparison with generally accepted current medical practices; certainly, Do Not Resuscitate orders, removal from life support, withholding nourishment or medical treatment, and pain medications given by doctors, such as the palliative care that Ken talked about.

Ken Norton: Essentially, part of the discussion that comes up around these things is, “Aren’t we already on this course now?” in that some of the decision that we talked about and we saw how that happened historically; that it was, first, the right to refuse treatment, then the right to withhold life support, those kinds of things. We move from what are passive measures like refusing treatment to active measures such as discontinuing life support or that kind of thing.

Again, having recently experienced the death of a family member, where he was being treated for pain at the same time that he was having respiratory issues in the end stage of his life and was on oxygen -- this has been written about pretty clearly, that when we’re using major narcotics, those suppress breathing. Different articles I’ve read, whatever, say, “Well, maybe it’s a day or two” or “We’re treating that pain” but at some point that treatment of pain suppresses breathing and that could be said that it hastens death.

Ann Duckless: Okay. We have two more polling questions and then we really want to open the chat box to all of you because, we’re in good shape here with time. We have 35 minutes left or thereabouts and; do you feel your beliefs about suicide prevention will come into conflict Question 2? Yes or no? Question 2 is the Massachusetts Prescribing Medication to End Life that is the ballot initiatives that is up before the Massachusetts voters in a couple of weeks.

For those of you who are still answering the poll and have answered the poll, about 67% of us, two-thirds, do not believe our beliefs will come into this conflict. Thank you.

The next question, the last question we have for polling; do you think you will experience a conflict between your personal values and your professional experience on Question 2? Yes or no? Do you think you will experience a conflict between your personal values, and we’ve talked about many of those here today, and your professional experience on Question 2?

Ken Norton: We see 80% saying that, no they don’t believe it will; about 20% saying yes. One of the things that we should emphasize is that the Massachusetts law is very clear that it’s voluntary on the part of the healthcare provider and even builds in sanctions so that, let’s say for instance, a Catholic hospital, the Catholic Church has taken a position against this, that it doesn’t allow a provider working in a circumstance where their employer was said they're opposed to this, to go ahead and do it on their own. For the most part, people will be able to choose whether they participate as a healthcare provider or not.

Ann Duckless: We have a question here, Ken. “If a person has been adjudicated as not competent, can a guardian make this end-of-life decision on that person’s behalf?”

Ken Norton: I don’t believe that there is any provision for that in this legislation, currently, but that’s a great question.

Ann Duckless: Some of these questions, we’ve heard from some of you that these ‘yes’ or ‘no’ questions make it a little bit difficult because it might be ‘maybe’ and we didn’t include a ‘maybe’. We forced the point but we do respect the fact there’s a lot grey area here with Question 2 and the death with dignity issues.

Ken Norton: Thank you for that comment. I think that one of the things that I thought was profound for me when I presented this earlier this year was that at the end someone walked up to me sand said, “Well, I came into the room knowing pretty clearly how I thought I felt about this issue and I leave really not knowing.” I think that what I liked about that statement was that these are really complex issues and, as we’ve emphasized, complex in terms of our personal beliefs, in terms of our cultural and religious beliefs and background, complex in terms of our codes of ethics, and the relationships that we have maybe, as healthcare providers and also as family members. They're not easy black and white answers to some of these things.

Ann Duckless: Ken, “What if we have Catholic hospitals or other Christian-based hospitals, can those hospitals forbid this Act? Can they forbid the sanctioning of this Act if it was approved?”

Ken Norton: Yes. My understanding under the law is that that would allow a facility or an employer to say that no one in that facility is going to participate and that they would be subject to sanctions if they did go ahead and participate.

Ann Duckless: “In Oregon and Washington, since these are the two states that have legislated Death with Dignity, are there any guidelines about confused medications?”

Ken Norton: Not that I’m aware of. It’s a great question particularly in terms of lethal means restriction and maybe something worth following up in terms of, if the law were to pass, how it gets put into practice that family members be advised that they should dispose of any medications after a person’s death and the importance of that.

Ann Duckless: We’ve talked about the two witnesses needing to be present to the request by the patient and one of those needs to be a non-family member. “Could the treating physician be the second witness?”

Ken Norton: I don’t believe that that’s so. I think it has to be somebody other than the treating professional.

Ann Duckless: I agree with that.

Brandy Brooks: Ken, that is actually correct. The patient’s attending physician cannot serve as a witness.

Ann Duckless: Thank you, Brandy. We’ve had a question about the actual medicine that is prescribed under this law and I think that’s way beyond our purview. And for lethal means restriction, I don’t think we’d want to say it anyway. We have our colleague from Harvard who practice lethal means restriction and research it so we don’t know what that actual medicine is but, suffice it to say, that it would end someone’s life within the guidelines that we talked about.

Oh, the commercials in Massachusetts. We’re not getting those commercials up in New Hampshire. I wish were because we could stay tuned to more of what is happening. Is there a lot of media that is being devoted to this issue in Massachusetts? A lot of TV ads?

Yes. What I hear is that there are a lot of these ads that are not in favor of Question 2. Yes, that’s what a number of you are indicating.

Ken Norton: I think, suffice it to say, that from both sides that you have to be careful of what you're hearing or what you're reading and that it’s really important, to the extent that you can, that you learn as much as you can for yourself about some of these things. And, as with any issue that’s a sensitive issue, that it’s very easy for things to be exaggerated or sort of extreme polarizing views to be expressed.

Ann Duckless: Certainly, Christian-based religions and Catholicism are opposing this.

“Do we think that this will possibly pave the way to normalize euthanasia so that people no longer try to check for or evaluate for depression in older adults or other terminally-ill folks?”

Ken Norton: I think that my answer to that would be that, no, there’s no evidence of that happening in Oregon and Washington. If anything, I think that there may be the possibility that this law would open up conversations. It would make healthcare providers more sensitive to screening for depression in folks with terminal illnesses.

We certainly know that the co-occurrence of depression in illnesses like diabetes, cancer, heart disease ranges from 30% on up and that’s an important part of what we know now about physical illnesses. It isn’t always necessarily screened for or discussed. Perhaps this opens the door for conversations that primary care providers might have about a person’s quality of life. It might offer the opportunity for suicide prevention, even, that hasn’t been there before; if a person discloses when asked that they have been thinking about suicide or thinking about wanting to attempt to end their life.

Ann Duckless: “If the person cannot swallow pills, are there alternatives? Because, certainly the pills are the ones that have been shown on the Massachusetts ads.”

Ken Norton: I believe that that’s the case and I think these are some things that are still a little bit unclear. The person has to be able to administer the dose themselves. That’s an important part of the law. One of the questions that came up before was, “Well, what if the person is physically unable to administer the pills? Is there another way that that can be done?” I’m assuming that, some of what we saw with Dr. Kevorkian was that there a number of methods that could be created for a person that wasn’t necessarily capable of taking medications themselves as a way of ending their life.

Ann Duckless: “Many statewide and national suicide prevention organizations and coalitions are taking a ‘no position’ policy on Death with Dignity laws and, as we researched this topic, Ken, in responding to the Massachusetts initiative, have we learned anything that would help suicide prevention folks form a definitive position on assisted suicide?”

Ken Norton: I think that’s a great question. AAS is the American Association of Suicidology and I think that, from the perspective of an organizational standpoint and I would just speak for NAMI, but I think that probably Mass DPH would feel the same way. These are individual issues and there’s a reason that the legislature even passed on this and decided to let it go to a ballot question. It’s because there are very personal and individual perspectives on that.

There may be some things that it’s important to not take a position on. I think, as an organization in that regard, that this is one of those positions where it is a personal decision and it depends from individual to individual. I’m sure that our membership as an organization would have very different opinions among the members about how they feel about this. I’m sure other organizations, likewise, would find that diversity of thought and diversity of opinion. It’s hard to be respectful of those things as an organization if you take a position one way or another around this.

Ann Duckless: I’m going to say that when we introduced this to our staff that we were going to be facilitating this webinar, our staff asked us the same thing, “Well, what is your position? Or what is NAMI’s position?” Frankly, looking at the pros and the cons of this, I’d really have to think long and hard about this if I were the Massachusetts voter. I really don’t know, right now, fully. That’s why I appreciate folks saying that it was a ‘maybe’, maybe ‘yes’, maybe ‘no’, because I’d really have to be very reflective on it prior to entering that voting booth.

“The commercials in Massachusetts have begun. One is from the AMA. One’s from a pharmacist. Some are opposing. There are concerns that other individuals, who are not the person with terminal illness, might have access to the medication.”

That’s a great question around lethal means and thank you for that.

Ken Norton: It may be something that maybe suicide prevention organizations or other organizations in Massachusetts want to be involved with if this referendum passes and comes into law; maybe developing some type of brochure or something to be handed out to folks that are talking to their physicians about this, around restricting access to lethal means, around some of these other issues. Even suicide prevention hotlines, other kinds of information, might be some action that people want to take.

Ann Duckless: Samantha, I’ll get to your question. I’m just getting down through some of the other chat questions here. Great question asking, “Does someone have to be with the patient when they take the medication?”

Ken Norton: I believe that that’s the case but I’m not entirely sure. What it said is that the person self-administers it. Really, the reality is that once they’ve done that with their doctor that they're free to do it at a place and time that they would like to it.

I just read a book called “Final Gifts” about people dying and one of the things that it described was that while many people and most people want to be with loved ones and want loved ones present; that some people clearly choose to die when there isn’t anyone present. They're very private people. A sort of anecdotal story; the person left the room for two minutes to grab a cup of team and came back and the person had died. I don’t believe that somebody does have to be there. I think that that’s part of that self-determination piece.

Ann Duckless: “Do we know if there have been any cases in Oregon or Washington where a person who took the steps to end their life but did not die? In other words, they took the medication and did not die?”

No. We do not know that.

Keep your chats coming in. We’re going on because we have only three resource slides left for you because we’re at the end of our content for you.

“Do we think that this practice will further stigmatize suicide and mental health? Because this law approves ending one’s life when they have a terminal illness when some argue that other mental illnesses could be viewed as the same if the result is suicide?”

Ken Norton: That is a complex question. I believe that one of the states, either Washington or Oregon, specifically stated that mental illness is not considered a terminal illness under this law. Massachusetts addresses that by saying that the person has to demonstrate that they're competent and capable of making a medical decision. I think that, for the most part, the general public recognizes that this is really about an end-of-life issue.

That given the parameters -- again, there’s a lot of discussion about this, “How can you know when somebody is within six months of being terminally ill?” -- but the parameters of the law are that it is very focused on the last six months of a person’s life and that the person has to have a terminal illness. It’s really, in some ways, very separate from the whole question about suicide for somebody that isn’t terminally or isn’t near the end of their life. I think most of the discussions in the articles that I’ve read really focus in on that.

Ann Duckless: We have a statement that, “The medication has to be self-administered so that the only option would be pills and therefore it’s not technically physician-assisted, only in the sense that physicians are prescribing the medication for the ending of one’s life.”

Ken Norton: Right.

Ann Duckless: “Is the ballot question non-binding?”

Ken Norton: No. I believe it’s a binding ballot initiative and that there were certain thresholds that needed to be met when they were collecting signatures and one of the thresholds would have been that it was a non-binding question, in terms of number of signatures that were certified. They met the threshold for the number of signatures certified for it to be a binding referendum.

One of the things that I think is a challenge with this referendum question is that, I believe that goes into effect January 1st, which is a pretty short period of time to get practices in place if the will of the voters is to enact this binding question.

Ann Duckless: Yes. We have 30 minutes left and someone’s asked about organ donation. “If someone has this option, they choose this option, could they still offer up their organs?”

Ken Norton: Great question. I don’t know the answer to that. I’m assuming that, given the toxicology involved in terms of, it’s an overdose issue, that some of the organs; liver kidneys, whatever might be compromised and might not be available for transplant.

Ann Duckless: Yes. In the Massachusetts brochure that is being referred to is actually what are the guidelines of the law, in that someone is advised to have someone else present and they not do it in a public place. That is actually something that is recommended by Massachusetts, the outline for Question number 2.

Great question. I’m not sure -- boy, I wish Alan could chime in on this one or other folks. “What entity introduced the Question in Massachusetts?”

Ken Norton: There was an organization. I forget what the actual name of it was, although I think it was something to do with Death with Dignity. They were the ones that, I believe, were the ones that initiated the signatures and the ballot question.

Ann Duckless: Brandy, if you know that question, you could certainly chime in. I don’t know if anybody else would know that question about “What entity started this initiative or introduced this question?”

Brandy Brooks: I don’t know off the top of my head. I do not know the organization name.

Ann Duckless: Okay. We do know that they had to go through, as Ken referred to earlier, a number of gaining enough questions to further initiative forward and they met all the criteria to get to this point for the voters of Massachusetts to then decide whether or not they would want this.

Ken Norton: This says that the main supporters of the measure include the Massachusetts Death with Dignity Coalition. I believe that they may have been the ones that collected the signatures. It says ‘referred by’ under the fact things.

Ann Duckless: Okay. Just to get to our closing view, and the next three slides are resource slides so that if you're more interested on Question 2, on slide 40 -- and all of you receive a copy of this. This webinar is being recorded so people can access it if they're not on the call but, certainly, if you are, you will have these materials. On slide 40 we will have other resources there if you want to tune into other places or other forums, video forums, about Question 2. Those are on slide 40.

Ken and I really just want to point up that, obviously, this issue of suicide and death with dignity; they're complex issues. They have powerful legal, ethical implications and, even though it’s the decision of an individual who is faced with terminal illness and living for six months, it does affect family. It does affect others around that individual. Certainly, for any one of us that is thinking about suicide or feeling suicidal, we do need to turn to a trusted colleague or friend or family member to disclose this.

Any other questions?

Somebody has indicated, “This webinar was nice to have some clarification surrounding this issue.”

We hope we helped to do that with some of the concrete information but, certainly, we appreciate that we may have introduced more questions than solidified folks’ stance on this position.

Okay. We have a curiosity question about the Medicare money wondering, “If 25% of the Medicare is spent in the last year of life and 9% in the last month?”

Ken Norton: As I said when I presented that slide, there are a lot of different statistics that are available about that. I wasn’t presenting that as the be-all end-all. If you have a source that says that, then that may be right as well. The point that I was trying to make was that part of that argument is about the significant amount of healthcare costs that go into the last days, weeks, and months of somebody’s life.

Ann Duckless: Okay. Going into just a resource slide because the Samaritans are a very big resource and a valued resource in Massachusetts so here is the Samaritans statewide hotline on slide 39; the National Suicide Prevention Lifeline; the Trevor helpline, for gay, lesbian, bisexual, transgender, questioning youth and adults; and also the other Samaritans in Massachusetts, to include our participants today from Merrimac Valley.

You will see on slide 40, this is the additional information for Question 2, certainly through New York Times and some other resources that were provided to us from the Department of Public Health.

On 41, our last slide, is our contact information. Certainly, we do believe that this can be an emotional issue, depending on where people are hailing from or coming from with regard to their personal experiences, so please seek out any kind of assistance from the National Suicide Prevention Lifeline or from Samaritans if any of this content has been of an emotional nature for you.

“Can pharmacists opt out of filling these prescriptions?” and “Would Medicaid or Medicare cover end-of-life treatment?”

Ken Norton: I don’t know that it will be to clear to pharmacists when they're fulfilling the prescription that it will be an end-of-life script but that’s a good question and I would assume that, if it is clear, that yes they could opt out under the law because the law is very clear that it’s voluntary.

Ann Duckless: In Worcester County, one of the resources is Community HealthLink, the emergency services program. 1-800-977-5555 for emergency mental health assistance.

As our Chairperson has said, all of you will receive a link for this recorded webinar.

Any other chat box questions or comments? We have about 20 minutes left. We did really want to get through in a timely manner and try not to take all of the time but it’s a little bit difficult when you're interacting with folks only via the written word. I think it’s been great. It’s been a real challenge for multi-tasking, in terms of all the comments and questions that people have referenced.

I’m going to go back one slide for the resources. Here’s additional information on Question 2.

We do have a question. “Is NAMI New Hampshire taking a stance on Question 2?”

We are not, nor is the Department of Public Health or the Massachusetts Coalition for Suicide Prevention in Massachusetts. I think Ken’s point was, “Are parents who are living with family members with mental illness would come at this issue from a different stance?” I think when you mentioned that from what are members’ stance would be.

Ken Norton: Again, it’s just a diversity of opinion. Obviously for us as an organization, NAMI New Hampshire, we’re not operating in the state where the ballot’s taking place. But, for the other Mass organizations I think a number of them have chosen not to take a formal position for this, recognizing that their individual members or service providers or other organizations have diverse points of view.

Ann Duckless: We, too, appreciate opening -- Samantha has thanked us for opening this up to professionals out of Massachusetts. We do thank Department of Public Health for making this available. We waited until just a few days before this webinar, respecting that this was a Massachusetts ballot referendum but we were able to open it up to New Hampshire as well the listserv across the country, certainly via suicide prevention and we agree. For you in Tennessee, this is a discussion that we do believe is a healthy discussion especially for those of us who work in the field of suicide prevention; for us to be having this discussion. So, “Thank you” from Tennessee.

Ken Norton: A couple more questions here, one, “It seems like it officially sanctions suicide in the last six months. It might cause some people struggling with challenging but non-terminal illness to give more serious consideration, which doesn’t seem like a good outcome of the law.”

I guess that’s really a statement not a question.

Another question following, “Big picture question; if the measure passes in Massachusetts, do you see this as having a national impact and why?”

Sure. As Massachusetts goes, so goes the nation. Because you can’t see me, I’m winking. But, seriously I would say that, yes. It was over ten years between when Oregon passed it, close to 15 years, and Washington State passed it. Maine, I believe, had a ballot question two or three years ago that lost. It was very close. I think it was 51% to 49%. A number of other states have had legislation and/or ballot question.

I think at some point, as people experience this and are able to show some statistics and research and impact on it -- I think that if Massachusetts votes no, that might quiet things for a while in some areas where, given that Massachusetts tends to be a fairly liberal state, that people would feel like it may not be something that’s worth pursuing at this point in time. If Massachusetts votes yes, then I think that you will see people in other states, who are very passionate about this issue that they want to have their choice for their family member or loved one, they may pursue ballot initiatives in their states as well.

Ann Duckless: 45 different phone lines were used in this webinar but, certainly, as we found out from our folks at EDC that entire departments were involved, which was just quite the thrill for Ken and I. Thank you.

“The Canadian Association for Suicide Prevention had an interesting session at its national conference last week on what role they should take on this question up there. They had a panel of ethicists and palliative care experts. Very interesting. You might want to contact former CASP President, Adrian Hill, who’s behind that.”

Wonderful. Thank you for that, for our neighboring country to the north

“Do you have to take the medications in Massachusetts? Or once prescribed, wherever you feel best?”

Ken Norton: Again, I think the intention that it would be taken in Massachusetts but once that prescription is given I don’t think that they necessarily have control over that. I think that the other consideration, though, is if the medications are taken elsewhere, it’s likely that the [death] certificate would not necessarily indicate that the cause of death was related to that person’s terminal illness which may be very important for that person or their family and an important consideration.

Ann Duckless: Another important point, and thank you for this, someone’s pointing out the cultural differences in terms of population and diversity between Oregon and Massachusetts. It does make it difficult; you’re right. “That Massachusetts will have similar outcomes to Oregon, with regard to the impact this Act will have on suicide attempts. Any thoughts?” Thank you for pointing out cultural differences.

Ken Norton: I think first of all one of the things that I’ve not, and I’ve read a lot on this subject, I’ve not seen anything that really ties suicide attempts in Oregon or Washington to the bill. I think that question’s been raised. That’s not to say that it may not, it’s to say that we don’t know or it’s not been thoroughly researched. I think that is an important piece.

I think it’s hard to, as you point out, to say; will there be similar outcomes in Oregon as there are in Massachusetts? My feeling would be similar in the sense that the laws are very similar; the timeframes, some of the requirements of the law. They're very restrictive in that sense. In that regard, I would expect that some of the outcomes would be similar.

Ann Duckless: We do have a link to the Canada session but only the Chairperson could put that up for everybody but it would be whichtools..

“We have the belief that it’s two separate issues, as far as impact on suicide attempts; meaning one population, people with mental illness, and the other population, people with terminal illness.”

Ken Norton: That’s an important point, as well.

Ann Duckless: Right.

Ken Norton: Great questions and comments. Keep them coming if there are others.

Ann Duckless: Yes. Do we have any other folks that want to weigh in in the chat box? While we have some down time, Ken and I really want to thank all of you, including DPH, for this opportunity to facilitate this webinar. It certainly keeps us on our toes in working in the field of suicide prevention. It really has been an honor to be part of this and we really are anxiously awaiting what that vote will look like in Massachusetts.

We have a statement thinking that, “It will not increase the overall suicide rate.” And she appreciated that, “Just because you have the amount of people that filled the prescription did not mean they necessarily took the medication.”

I guess that’s why I think it’s so important to look at the lessons learned from Oregon and Washington. Even though we did have this individual who mentioned that, culturally, Oregon is different from Massachusetts and vice versa, the lesson learned out of Oregon was that it was just the option. It was the choice. It was having that choice and the comfort of that choice but that people didn’t necessarily exercise that choice to end their life.

Ken Norton: I would remind people since so many people indicated with a family member, that there are many pieces here along the timeline as we move toward end-of-life issues, in terms of having conversations with your loved ones about death and about dying and about quality of life and end-of-life issues. The opportunity to develop a living will, to give advanced medical care directives, those kinds of things and to have those conversations really empowers people.

We don’t talk a lot about death in our society and I think people aren’t familiar with death. We don’t witness death. It’s really hidden away. I think when people understand that pain can be mitigated, that death tends to often be very peaceful, that they can have some control through advanced medical directives and through having conversations with family members and loved ones, that that’s an important part of the process for any of us to think about, whether it’s with people that we’re serving in a professional capacity or with our own family members.

Ann Duckless: Right. I’m glad you mentioned that, Ken. I remember early on in this webinar, we talked about how many people on the call actually have a living will and it was a high proportion who did not have a living will. We hope that we’ve given a lot of information to these issues that people, perhaps, think differently or take measures in advance for themselves or for their family members.

Ken Norton: Again, a special thank you to Brandy Brooks for being our host and our facilitator; did a great job helping us get this prepared and set up. So, thank you, Brandy.

Ann Duckless: No small feat with the dinosaurs we are in technology. So, yes, kudos to that.

Brandy Brooks: You are more than welcome.

Ken Norton: It looks like that’s it. So, thank you all very much and certainly hope that you will engage in further discussions around this with your colleagues and with your family members and friends. Certainly, whichever side you're on, please get out and vote on November 6th.

Ann Duckless: Yes. Thank you. Massachusetts, we want to let you know that the eyes of the nation on certainly on you with respect Question 2 and thank you to all people today, here in New England as well outside of New England, who participated in this webinar today. It’s near and dear to our hearts. Thank you.

Brandy Brooks: Just to parrot Ken and Ann, I’d like to thank them for presenting this afternoon and, as well, thank you all for participating in this webinar. As mentioned several times, everyone who participated today will receive a follow-up email that will contain a link to today’s recorded webinar. In addition, please be on the lookout for emails about upcoming webinars and trainings being sponsored by DPH.

After you log off today, please take a few moments to complete the webinar evaluation because we do use that, in terms of creating future webinars. Just to, again, reiterate Ken and Ann, I hope that you gained a little bit more knowledge about Question number 2, Prescribing Medication to End Life and, again, thank you all for participating and have a wonderful day.

Ann Duckless: Thank you. Bye, bye.

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