2021-10-01 00:00:00 - Joint Committee on Public Health
2021-10-01 00:00:00 - Joint Committee on Public Health
(Part 2 of 3)
SHOW NON-ESSENTIAL DIALOGUE
a
panel now. Larry David, eric
Larry moe art. Uh, is the panel available.
Uh, I'm here if necessary. Very good.
Uh, I don't know what that background noises. But should I go forward? I think should Yes. Thank you so much. We can hear you okay.
LAWRENCE MOWATT - CONCERNED CITIZEN - HB 2381 - SB 1384 - My name's Lawrence Mowatt but everyone knows me as Larry. I'm a lifetime resident of Massachusetts and I'm here in support of the two bills in front of us. I like the word options in the title as the option is exactly what terminally ill patients are looking for, the option to avoid needless suffering. This act is not a law to restrict anybody from the choice of how they die. It simply eliminates the criminality of prescribing peaceful, comfortable way to end unproductive never ending suffering. There was no evidence of misuse in medical aid in dying there are 11 jurisdictions in the US. I have given some thought to the religious groups who may find it distasteful to allow this option. I am reminded of the83 many times throughout history and even currently, when a religious belief has had disastrous life ending murderous results.
As a Christian I see Christ as my guiding light and not as a martyr who chose to suffer at the end of his life, suffering was inflicted upon him. I believe in caring for and loving others.105 The act will allow the medical profession to do just that love and care for others without fear of criminality. For those who believe uncontrollable suffering at the end of life has value I have not read nor seen any evidence that suffering until death has any redeeming quality. I see no downside to the passage of this long overdue act. I am terminally ill on hospice with an unusual aggressive metastatic prostate cancer. I have been through all the treatments available to me, culminating in a clinical trial that kicked my behind, leading me to choose quality of life over anticancer treatment. By document my family agreed that this decision and that this decision has been the right one.
My quality of life has soared. Choosing this option has made the process of dying a rich and rewarding experience. I am a supporter of the legal right to end my life when it becomes unbearable. My life has been rich and wonderful. I just want to know that I have the option available if things turn ugly. My thoughts turn to my loved ones who I want to be there as182 I182 pass. My wife of 46 years, my three grown Children and my soon to be six grandchildren know me as papa a fun,192 Strong,192 can192 fix anything kind of guy who loves them with all my heart. My goal in life has always been to make others happy and comfortable. I want to have the option to leave them peacefully. I do not want their last vision of me to be a bag of bones right writhing in pain, unable to be the husband, dad papa that they love with all their hearts. Thank you for listening, your support and your public service. SHOW NON-ESSENTIAL DIALOGUE
Thank you Larry so much for sharing your story and your testimony. We have others on this panel with you. David and eric. Are they here? Arrogance eric is here but I don't know why that people
you you yourself everybody if you can meet yourself and it may help eric.
Let me let me let me
I'm eric if you are logged in with any other device other than this, is it no better? Can you hear me258 now? We can. Yes. Okay, thank you.
ERIC RUBY - AAP - HB 2381 - SB 1384 - Chairwomen Decker, Comerford and committee members thank you for this opportunity to testify in support. My name is Dr. Eric Ruby, more than four decades. I remember the American Academy of Pediatrics, the Massachusetts Medical society and the AMA. I have given supportive testimony to legislators five times since March of 2012 but what has changed in 10 years? The attitude towards end of life care among my colleagues and notably increased support for medical aid in dying. Nationwide surveys of US physicians300 demonstrate a clear and consistent change. From 2010 to 20 support for medical aid in dying rose from 46 to 55%. At the same time opposition decreased from 41 to 28%. The medical profession is slowly catching up to the public.
70% of Massachusetts residents support medical aid in dying. A 2017 survey of MMS members confirmed that 62% supported medical aid in dying for terminally ill patients. In Massachusetts end of life care, continuing medical education has become mandatory for licensure. Medical schools are integrating end of life courses into standard medical education. Major medical associations, including the American Academy of Family Physicians and the American Academy of Hospice and Palliative Medicine have rescinded opposition in favor of a neutral stance. They neither promote nor condemned medical aid in dying but acknowledge and respect a diversity of views. Since December 2017, the Massachusetts Medical Society adopted a position of engaged neutrality. Quote362 it362 would362 serve as a medical and scientific resource to inform legislative efforts that will support patient and physician's shared decision making.
The AMA's Council on Ethical and Judicial Affairs affirmed in its Code of Medical ethics that physicians who practice medical aid in dying are not violating their professional ethics or standards. Quote supporters and opponents share a fundamental commitment to values of care, compassion, respect and dignity. I've had 48 years of professional experience with death and dying and one very tragic personal experience. It's taking me too long to die. These are the words of my father, a dignified, proud and respected physician who had metastatic prostate cancer. After a month in hospice, a 30 pound weight loss, black and blue marks all over his body and crying in pain daily when he was not sedated to an almost comatose state he died in 30 days as he predicted. A few days later, my mother said, don't let this happen to me. Esteemed members of this committee the time to act is now. The people are with you, doctors are with you, terminally ill patients are begging you please support the Massachusetts End of Life Options Act. Thank you for listening. SHOW NON-ESSENTIAL DIALOGUE
Thank you for your testimony very much. And now we're looking for David. Yes. Hello, This is David group. I hope that you can hear me.
DAVID GRUBE - COMPASSION AND CHOICES - HB 2381 - SB 1384 - I'm coming to you from Oregon. And so I thank you very very much, Madam. Chair and members of the committee for me to offer some testimony today, Uh, in support of these bills that you're considering. Um, I humbly submit that I'm probably the person with the greatest experience about medical aid in dying because as you know, in Oregon, we've had this option uh, in471 end of life care, uh, for almost 25 years. Um, I practiced in a small town in Oregon, uh, For 35 years and it was a family medicine practice, cradle to grave. Delivered babies, made house calls and sang at my patients' funerals. A first patient asked me about medical aid in dying in 1999. Our law was passed similar to your law in 1997.
Uh, I have been involved and him continue to be involved in the hospice movement since 1980. In fact, I've been on the board of directors of our local hospice several times and chaired the ethics committee of our hospice. So I'm513 very familiar with end of life care, but I was not particularly familiar with this option in 1999. So I was mentored by the medical director of our hospice and I supported my patient's request. Over the years several other patients requested this option. We had long conversations to explore their uh issues. Uh, and I have prescribed um, these medications. I have to tell you as a person who is personally experienced to this, um, that so many of the opponents' fears and allegations are just not real.
Uh, in Oregon our end of life care hospice use and utilization our palliative care558 programs are supported across the nation almost always considered the best and I'm very proud of that. Partly I think the reason is because we can have complete and full conversations with our dying patients about what their goals of care are and we can address their suffering. These individuals are all going to die,580 but they do not need to suffer. They determine what suffering is, I as their doctor don't tell them what their suffering is. They come to me and explain it. I need to listen. So in the end, the bill that you're considering is not about people dying, it is not about suicide. It is about intolerable terminal suffering. And in end of life care, only two things matter comforting our patients and respecting their wishes. In Massachusetts if this law is passed, more people won't die, all of these people are dying but fewer people will suffer. I'd be623 happy to answer any questions from my real life experience. Thank you very much for allowing me to give this testimony. SHOW NON-ESSENTIAL DIALOGUE
Thank you so much for taking the time to the entire panel. Um I'll ask if there are any questions from the committee or comments.
Okay I see none. Um and again, thank you to the panel for your testimony and service. Um and now I have the distinct honor of handing this over to my esteemed colleague chair, marjorie. Decker who will facilitate um for this next bit of time. Thank you so much madam Chair, thank you madam Sheriff for your work this morning and for leading us off here and to everyone who has been um waiting to testify before us and and thank you to all my colleagues in both the house and the senate who are joining us today. Um at this time I will ask Pamela Daily. Ellen Lee brian shea and john Robinson Um You are next on the next panel that we have signed up.
Yes. Hi, I'm Ellen Lee I'm happy to go first. Everyone on this panel is with second thoughts massachusetts.
Uh this is pam daily. Can you hear me? We can actually pam we are now waiting for Ellen to give her testimony.
Okay shall I get started. Ellen? Please start. Okay.
ELLEN LEIGH - SECOND THOUGHTS MA - HB 2381 - SB 1384 - When I first heard about this type of legislation, I was all for it. It seemed like an717 option that I'd want for718 myself and loved ones. But as I studied this issue, the more that I learned, the more I realized that there were just too many inequities and risks to vulnerable people. I developed second thoughts. I urge all of you to keep an open mind and really look, look hard at the facts of assisted suicide. I am sure that738 you want Massachusetts policies to work in the best interests of everyone. Before I became disabled, I was a member of the group that advocates for this. The white, well educated and well off. Now that I'm a member of the marginalized, I see things very differently. I recognize the need for the common good.
When two thirds of communities of color are opposed as well as those of the working class and low income and major disability rights organizations then attention must be paid to this opposition. I'm here to say that the interests of a small number of people who want this option should not outweigh the many people whose lives will be impacted. People like me. People with disabilities. I'm part of the community that often doesn't get considered. We get left out not included not even thought of except to be used as an example of what it is to live without dignity, to be in a wheelchair and continent dependent on others for care. The presumption that one could not possibly have quality of life. That is a fate worse even than death and that is false. These are judgments made by people that result in existential fears about what will happen when they age become sick and disabled.
This devaluation of life based on an ageist and ablest view of some perfect checklist of functional abilities is what lies at the heart of this type of legislation. This is what makes people feel like a burden that we ought to check out rather than live out our lives. I called out a series on end of life issues at my church and was struck by how many people were filled with wary that they would be a burden on their loved ones financially, emotionally, physically, if they couldn't completely take care of themselves as they became aged or sick or in other words, became disabled. They didn't want to take away money from their family or ask for help in taking care of themselves. They didn't want to be humiliated and couldn't imagine how life would be worth living. I hope that my presence as a wheelchair user who does require care and has a good quality of life help remind them we're all into independent at different times in different ways. And this doesn't lessen the inherent worth and dignity of our lives.
Instead of assisting people in dying let's provide medical assistance in living and meet the real needs of people. Let's offer real choices and treatment in palliative care. Let's provide home and community based care and correct health inequities and level the playing field in health care. Not discriminate against people deny treatment and then offer assisted suicide. Let's stop pretending that elders and the disabled are not at risk of abuse or that there are adequate safeguards or that this is always a peaceful death. Let's stop the euphemisms. This is suicide. This is not dignity. Dignity means that people are worthy of respect and everyone needs that care not to be demoralized or have a social pressure to die, it's suicide sends the wrong message and people with disabilities deserve real compassion not to hastened death SHOW NON-ESSENTIAL DIALOGUE
codifying this. Sorry. MS Lee your time is up and just want to finish up 11 thought because Okay North, we do usually three minutes have a stop giving you a few more seconds.
LEIGH - Okay, thank you. Codifying this into law is a way of sanctioning it and promoting it. No matter how well intentioned it's a socially dangerous policy. Safeguards aren't practical how will they be implemented or paid for? There's no realistic way941 this will be monitored just as this doesn't happen, SHOW NON-ESSENTIAL DIALOGUE
and the rest of your written testimony to us. I do appreciate. Um I know this is hard. Everyone we have 8-9 hours of testimony. We want to hear from everyone. I do encourage you please submit your testimony if you feel like you can't get it in the next three minutes and I assure you all of our staff on the962 house and the Senate. We actually do read through the testimony that comes before us.966 So I appreciate that. Um and I would ask folks to just please when you hear that alarm wrap it up because it's really jarring. I think for those of you who are giving testimony on such an incredibly sensitive issue to be muted and we would rather not do that. But we are that has been the practice moving forward. Um I would ask at this time um I have on on this panel Pamela Day are you here? Yes I am. Can you hear me? We can rout them and please begin. Okay
PAMELA DALY - SECOND THOUGHT MA - HB 2381 - SB 1384 - 18 months ago, if you had asked me if I supported a doctor assisted suicide bill, I would have answered sure why not choice is good And I would have believed that I could control whether I opt in or not. Undocumented mistakes by the way on doctor assisted suicide have been made and they are documented and I will furnish those in my written testimony. Since then I put two and two together and found that an assisted suicide bill does not add up to a choice that I can live with. In fact, if the bill is passed and the trend continues the odds of my dying prematurely and without consent without my consent1035 are surprisingly high. My disability puts me into a category of people who are systematically marginalized by the healthcare system.
What does it1046 say When Mass General Hospital, the number five rated hospital in the country after 20 years is still not fully ADA compliant. What does it say about our American culture which fails to soothe our fears of being left out, not considered, essentially not worth the trouble? Take a look at our Mass crisis standards of care if you are not familiar with what's in the minds of our current medical industry. People have always been afraid of disability and the perceived loss of dignity that is associated with it. In fact, less of dignity polls is the number one reason for wanting a suicide legalized. If loss of dignity means having to lean on a family member or a home healthcare worker for your eating bathing toy living. If it means being inconvenienced and ashamed by incontinence or memory loss, well then at least all of us are in the same boat1105 and we can all look forward to losing our dignity together because the very act of living means that we are aging.
Our bodies are breaking down and for sure at some point, we will be in the need of the care of others. You could say that we are all becoming more disabled1121 with every passing day. Maybe we should1124 think about normalizing aging and disability by reevaluating the meaning of the term loss of dignity. We could embrace those in need of care by extending access to health and palliative care. We could focus on easing the inevitability of becoming frail in order to rid people of their guilt of being a burden so they won't conclude that their best option is to be dead. Many doctors determine, sorry many doctors discriminate based on their own fears of having to be in the need of others.
We have proved that we can, that they can voice their beliefs on to their patients and patients families, both overtly and surreptitiously. In other words, the decision to die is not actually ever just the patient's decision. There is always a doctor's opinion and bias involved at the portal of getting this deadly medication. Are we going to1184 allow false notions of upholding dignity push us to the brink of suicide? Are we serving the greater good by granting doctors who we might not even know the right to decide if our life meets their matrix for saving? I believe doctors1201 should never be in the business of deciding who will live or1204 die. Never, ever. SHOW NON-ESSENTIAL DIALOGUE
thank you. Um at this time I would have welcome brian shea
are you here brian
Congress? We will try to circle back to brian um john Robinson
john Robinson Madam Chairman, my name is John Robinson Riggen, I don't know dropped the last name or not. I'm not sure but but you're here now, so welcome and please begin your testimony. Okay? I'll turn on the camera1256 to hang on a second.
Can you see me now? I can. Okay.
JOHN RIGGAN - CONCERNED CITIZEN - HB 2381 - SB 1384 - My name is John Robinson Riggan. My late wife Marga Lee and I lived full time in Western Massachusetts for 47 years. We celebrated our 50th anniversary in June 5th 2020 within weeks, my wife began to experience back pain. She was a very fit and active 138-140 pounds and assumed it was some kind of strain. She sought physical therapy but when the therapy did not relieve the symptoms, she sought advice from our family doctor who in turn advised a scan. I was in the hospital in early August for tests the day she had her scan, she called me to say she had1305 pancreatic cancer. We both didn't know what pancreatic cancer was and the implication for her future.
My sister an oncologist called to tell me the tumor was ferocious. My wife's oncologist immediately put her on morphine as well as chemotherapy in the hope she might stabilize and we could buy some extra time. By October it was evident that chemo was having no effect. My wife has put into hospice care by January 9th 2021, she was dead. My wife died at home rather than in an institution where because of the COVID pandemic I wouldn't have been able to visit. I took care of her1345 about 22 hours a day until the end. Neighbors and friends, me for walking our dog and occasional shopping trips. Because the pancreas produces enzymes for digestion my wife became increasingly limited on what she could eat. I would buy whatever food might appeal to her but invariably after initial hope, she found the food indigestible. She was reduced to eating handfuls of dry cheerios and occasional crackers. In the course of five months I watched my wife starve to death.
At the time of her death, she weighed around 70 pounds. Towards the end her wedding ring would slip off her finger. The amounts of1389 morphine were never sufficient to ease her pain. The only relief occurred when she went into a coma at the end. The coma lasted eight days. I did much of the care emptying the colostomy bag, administering medication under the oversight of hospice. On the second day of the coma up with great effort without opening her eyes she managed to put her thumb and forefinger around my wrist. That was her last communication with anyone in this world. We lived about five minutes as the crow flies in 20 minutes by car from the Vermont state line. Time and again, she expressed her regret that we didn't live in Vermont and have access to a dignified death for her, surrounded by family. It was not suicide in either of our thinking it was alleviating terrible suffering when the end was inevitable. Thank you. SHOW NON-ESSENTIAL DIALOGUE
thank
you for sharing your story and I'm sorry for your loss um at this time I would say that I think we actually had to john's um and there is a john Robinson who was on1456 the panel, who was by phone Mr mr Regan,1460 I think we had you correctly um somewhere else on the um I'm sorry, No, it's fine. You, we heard you, so thank you for your time just to let you know. Um so is there a john Robinson on the phone still?
Okay, um we're going to move on to another panel, I'm going to just do a few housekeeping reminders. I know earlier my co chair had asked if you have already given testimony, please sign off of this Microsoft teams platform. Um it is a very glitchy platform and it just makes connectivity harder and so we will ask you to move off if we've seen that you've spoken and you have not moved off, we will eventually move you off but we would rather you just did it yourself and then to those who are raising their hands um we1509 do not call on people um this is a hearing and every other hearing, it's the opportunity to1515 ask questions is for legislators who are on the committee and for those who have signed up1520 is to give testimony so I see your hands up and I know my staff has been moving her hands down but just to respond to those who got hands up, we will not be calling on you. I was on the call and overlooked was on the call. So we will come back to you. Um We do have a list of people who didn't make it and we will1540 come back and say your name and just couldn't hear me before for some reason. So that's why I was overlooked. I was trying to speak. So okay, I will I will get to you shortly. Thank you for letting me know your here. All right, thank you. Thank you. So use excuse me. That was the thing that happened with me as well. I'm Anita Cameron, I was on that first panel but I was in transit and you don't have a uh so I kept raising my hand to say I was supposed to testify. Okay. Just just for those who are on thank you, I understand that. Trying to figure out how to make sure we haven't forgotten you are not seeing you as hard. So I appreciate the patients with everybody. We do have a list of people whose names we've called and who have not been heard, we will come back to you. Um so just hold on tightly and um at this point we're going to move forward with the next panel. Um but for those who are on please hold on, we will get to you were trying to make this work for everybody. Thank you. Um at this time I'm just we have um I'm going to call on as a panel um dr timothy quill, dr David, Clive dr Don Deprez and lisa1612 Lewandowski. Um and just to remind everyone before you start talking at three minutes, when you hear the ringer, please really wrap it up at that moment so that we don't have to um do the mute button ourselves and please do submit testimony. If you feel like there's more to say. Um at this time I would ask timothy quill to please come forward
why I'm here. Yeah, we can thank you.
Um so I am a should I just start? Yes, your three1646 minutes has started.
TIMOTHY QUILL - AAHPM - HB 2381 - SB 1384 - Okay, I'm a palliative care physician uh from Rochester New York. I've been the past president of the American Academy of Hospice and Palliative Medicine. Uh I take care of a lot of seriously ill patients and their hope is always to live longer and then live as long as possible and die peacefully. The reality is with modern healthcare, people are able to live a little bit longer. They are often able to live sick a lot longer and at the end of sick, they are often faced with multiple challenges about whether to keep going or whether to stop. There's a higher probability because we have helped people live so much longer of falling apart before actually dying. And what kinds of choices do people have if they are unfortunate enough to be in this circumstance.
If they happen to be on life support ventilators or pressors, then the general message we have is listen to the patient, they know what they want. But if there are no life supports to stop and they might be suffering the same amount or even more their motivation for wanting to achieve death at that point is often questioned. They might be depressed, they might not be thinking very clearly about what they want. The truth is that any patient on a life support or not, who is thinking about the end of their life might be depressed and we should look for that in all patients. We should also look for cognitive impairment, make sure they're thinking clearly and then respond as best we can. The options available vary a lot depending on where you live uh, and also on your medical circumstances.
If you happen to live in Oregon, you have the option of being listened to and being provided with an option to hasten your death. MAiD is legal there in Oregon and 11 other states. It is not legal in Massachusetts or New York where I live. Uh, and so we are then looking at indirect options to help people who are in this circumstance after carefully evaluating them. Again, if they are on life support, they can stop them if they're having symptoms we can aggressively palliate them. We've even looked at the option of helping people stop eating and drinking if that's the best choice that they can have as a way of hastening their death.
But um, if you have a patient uh with advanced cancer who desperately wants MAiD, that is not going to happen in in New York or in Massachusetts currently. So we are looking to try to find more good options for people who don't have a lot of good choices here. MAiD would be an option uh if you happen to live in the state that allows this uh if you don't, then again, these other options which are not so elegant like completely stopping eating and drinking so that you can die of dehydration are maybe the best that you can do. So again, we're looking to have people think out of the box about what if they were in that circumstance, what options would they have. SHOW NON-ESSENTIAL DIALOGUE
Um
thank you. Thank you for your time. Dr David Clive okay,
he is not able to be with us today because his daughter is getting married. I am Lee Sabadosa I um okay. At least I have you on the list. Okay. Dr don depressed and then and then you.
Yeah.
So do you want me to go first now? Yeah,
DON DEPREZ - CONCERNED CITIZEN - HB 2381 - SB 1384 - Thank you very much. My name is Dr. Don Deprez and I would like to strongly urge passage of the End of Life Options Act. I retired in September 20181877 after 37 years in solo private practice in OB/GYN in Worcester Massachusetts. I am 73 years old, have three grown Children and seven grandchildren. I am originally from Rochester New York, but I have never met Dr. Quill. Um I can recall a few life events that brought me to this position. While growing up in Rochester New York as one of seven children in a Catholic family, I recall neighborhood friends whose sick pets would occasionally disappear. And I would ask my mom what happened to them and she would say they were taken to the humane society to be put out of their misery. That it was the humane thing to do.
So now I wonder if we treat our pets humanely, why can't we offer the same option to our fellow human beings who are begging to be at least given the option when all else fails. Rochester New York is also the home of George Eastman, founder of the Eastman Kodak Company, which popularized photography for the general public. He was extremely successful and a very generous benefactor. Uh, he funded the library at the University of Rochester and the Eastman School of Music. Um, as he got older, he suffered from a severe1968 disease, a major scandal happened when George Eastman after hosting a dinner party for close friends and associates in his mansion, excused himself and went upstairs and shot himself to death because he was suffering excruciating pain from spinal stenosis and no treatments were effective.
There are four principles of ethics, justice, autonomy, beneficence and non maleficence. I think this act fulfills all four criteria. We do not live in a theocracy yet. Those who wish to2011 do so may want to open their own ministry of Vice and virtue as the Taliban recently has. The people of Massachusetts want this option by 70%. Also a recent survey of doctors of the Society for Gynecologic Oncology showed that 69% supported medical aid in dying as an option, only 13% believed it2038 should not be legal. So again, I strongly urge passage of2043 this bill. Thank you very much. SHOW NON-ESSENTIAL DIALOGUE
Thank you lisa. You are welcome to speak. Whether it's on behalf of yourself or their previous participant. You have three minutes.
LISA WIDAWSKY - CONCERNED CITIZEN - HB 2381 - SB 1384 - Thank you. I am Lisa Widawsky, testifying on behalf of Dr. David Clive, professor of medicine emeritus at UMass Medical School and a consulting hospice physician. I have submitted my own testimony to the committee so this is Dr. Clive's testimony. My support for medical aid in dying stems from my experience taking care of patients on dialysis. While dialysis can prevent people from dying of kidney failure, it cannot spare them the burdens of debility and coexisting illness. Some patients find life so onerous that they wish it were over. When a patient decides to stop dialysis a peaceful death typically follows within a week or two. Seeing this many times, I began to wonder why a terminally ill person who is not on dialysis should not also have the option of ending their own suffering.2114
The experience of Oregon shows that a merciful death can be offered through a prudently regulated program. Fears of a slippery slope or disproportionate use of medical aid in dying among the poor or that people would bypass hospice or palliative care have not been borne out. Most terminally ill Oregonians do not pursue this option still, they die2143 with a comfort of knowing that that option exists. The concept of a willful death is hard for some, but to deny anyone the comfort of a peaceful death because of someone else's moral or religious views is wrong. I hope our legislators see that. Thank you. SHOW NON-ESSENTIAL DIALOGUE
Thank you. So I'm going to call the next three panel next three individual speakers and I am going to just remind folks there are a few folks who have testified already. Please log out and you're welcome to watch this livestream. Um, we do encourage you to keep watching, but we are asking you to please log out. Um, we will start logging out folks who have testified um, in a few minutes if you haven't done it for us. Um, and that really is about just trying to respect the, the quality of uh, our ability to hear and have people be able to connect. Um, at this time I'm going to call on Carolyn Hall and then I'm going to go back to, um, and invite Anita Cameron and then Vonda Hamilton to join us. So I'm gonna start with Carolyn Hall. Welcome.
Are you here Caroline?
Okay. We're going to keep you on the list and try to come back to you Anita Cameron,
are you here? I need to Cameron.
Okay. Vonda Hamilton,
You know, I saw you on the list here, Rhonda. I'm here. I'm sorry. I had a hard time getting back on. Okay, who is this? Bond to Hamilton? Welcome.
VONDA HAMILTON - EXPRESSIONS OF EMMANUEL - HB 2381 - SB 1384 - Hi, my name is Vonda Hamilton and I'm an ordained minister and missionary with a Master's degree in intercultural Studies And I've worked with the deaf and hearing people for 32 years. I don't just speak to you as a person involved in religion, but I speak to you as a person who has experienced great challenges with family members. My husband and I work with a nonprofit called Expressions of Emmanuel. We have seen the isolation that2290 deaf people can uh face and hearing people as well and suicide has often been very enticing. And many of these deaf people have toyed with it and actually proceeded with it as well as hearing people that I know. My sister had arthrogryposis multiplex congenita. I was able to spell that at age five. So I've been working with the disabled since I was born and that's 56 years.
My sister went on to become a social worker who cared for multiple disabled people and in their care she saw many abuses at the hands of other social, the co-social care system. And she went on to win the Victory Award for the state of Oklahoma. My mother was told that her life should be terminated at birth because of her multiple disabilities. I personally took care of my sister at times, even2337 as a youth giving her the bedpan, did that make her any less? Did that make me less of a person because I had to do that? No, On June 1st, 2016, my husband was diagnosed with stage four lung cancer with metastases to this spine and he was given less than six months to live. He's five years and four months later alive, he danced at his daughter's wedding. He attended his son in law's graduation and he's looking forward to having his first grandchild in January.
Even though we've had a lot of pain through this, we've had a lot of great moments and, his cancer is now greatly decreased or possibly gone. But we went through all kinds of treatments and even in his challenge, he has been working to make DVDs for deaf people. This very day we're going to a large group, we meet with a large group of death people and give them free encouraging DVDs. He has a thriving life, although he's had challenges. My mom was in her late seventies when she was given the diagnosis of pancreatic cancer and we were told that she would die a very painful death. We prayed and we use naturopathic medicine and she recovered completely later. She was diagnosed with dementia Alzheimer and finally had to enter the Texas State Veterans Home. I would go in to bring music pet therapy, drama and scripture reading and I would see these souls light up.
My mom lived four years in this center and she continued in different ways to bring light to others with her smile, gentle touch and kind word. I agree with all the others opposing this bill it is a slippery slope. Frankly, we've seen exceptions to rules everywhere. Medical professionals make mistakes and people can make decisions that are not, they cannot be reversed. And they2429 may have much life to live, even if their lives might be different, they might have a wonderful contribution to give to this world. This bill does go against the Hippocratic oath. We should not determine the value or longevity of someone's life. My sister did she have an2445 easy life? No, but she had a victorious life.
Did my mother have an easy life with her challenges? No, but she had a victorious life. My husband and I have had many challenges. But we've had a victorious life. Giving people the option to take a pill when they're under stress. When I first got my husband's diagnosis and then you know, one year later, I was given that diagnosis, there is great fear and there's pain and it's so easy you can make a decision to end your life. And I know that many doctors are just not going to be overstaffed and it could possibly given to people and they2478 make a rush decision. Thank you so much for your time. SHOW NON-ESSENTIAL DIALOGUE
Thank you. Um Anita Cameron, are you are you are you back with us?
Okay? Oh, great. Welcome.
Yes. Uh for some reason, I won't stay a muted. Um give me a second. I'm going to read my testimony so that I don't go over.
Thank you. Mhm. Thank you. Members of the committee for hearing my testimony. Um I'm Anita Cameron, director of minority outreach for not dead yet. The national disability rights organizations opposed to medical discrimination, health care rationing euthanasia and doctor assisted suicide age 23 81 S 13 802536 for uh dangerous because though these laws are supposed to be for people with six months or less to live. Doctors are sometimes wrong about a terminal diagnosis. My mother while living in Washington State was determined to be at the end stage of chronic obstructive pulmonary disease. I was told her death was imminent that if I wanted to see her alive, I should get their in two days. She rallied but was still quite ill. So she was placed in hospice. Her doctor said that her body had begun the process of dying, though she survived six months of hospice. Her doctor convinced her that her body was still in the process of dying and she moved on to colorado to die. My mom didn't die. She2582 became active in her community and lived almost 12 years passing away, February 1, 2001, 8 23 81. S 13 84 will put six people, seniors and disabled people especially at risk due to the view of doctors that disabled people have a lower quality of life, therefore leading them to devalue our lives now at race and racial disparities in health care. To this, Blacks in particular received inferior healthcare compared to2614 whites in the areas of cardiac care, diabetes, cancer and2618 pain management as a black latino. I didn't see assisted suicide as part of my culture. This is born out in the 2013 Pew study that shows blacks and Latinos are 65%2629 oppose the doctor assisted suicide and it's states where it's legal, rarely used the program. Doctors, sisters suicide proponents tend to be white professional and managerial class folks. What's especially dangerous is that2644 in states where it's legal if you lose access to healthcare, turning your chronic condition into a terminal one, you can request2651 assisted suicide. It will be cheaper to kill you than to care for you. As long as disability discrimination and racial disparities in health care exists2660 assisted suicide laws like age 23 81 S 13 80 for have no place in massachusetts, please vote no on H 23 81 and S 1384. Thank you very much. Thank you. Um, at this time I'm going to invite um robert robert P. Johnson,
are you here?
Okay? We will come back to you, Joanne Vassiliou.
Hi Joanne. Hi, I'm here. Welcome high. Mhm. The last time I testified on this topic was in 2010. I talked about a friend who had endured years of living with a degenerative neural muscular disease. When she was on her final deathbed and in physical and emotional pain, she begged me to help her end her life. I didn't and the guilt that I felt and still feel to this day haunt me. But today I'm here to ask for your help. In 2017 I was diagnosed with an incurable blood cancer. I've had a stem cell transplant. I will be on chemotherapy for the rest of my life because the cancer causes little lesions or holes in my bones. I've had to hip replacement surgeries and have fractures in my back and chest. But I love my life and I'm grateful for my family and my friends who give me the emotional and physical support. I need to keep going. I'm grateful for the medical teams at Dana Farber and MGH and for the scientists2766 and2767 pharmaceutical companies who work to develop new treatments to control the cancer. But unless a miracle cure or treatment comes along, it is likely I will run out of options and die from this disease. Given this reality, I've been preparing for my death over the past four years. I've read hundreds of books about death and dying. I met with religious and spiritual leaders and emotional and energy healers. I've learned how to meditate. I've started reading poetry. I have forgiven everyone I needed to forgive and I've asked others to forgive me. Cancer has in fact made2803 me appreciate my2804 life more than ever. And now I live life in true amazement And while I want to stay on this earth for many more years, the thought of transitioning to another life for spiritual form does not scare me. What I fear however, is2819 the dying process. While I'm lucky to still have both my mom and dad with me, multiple friends have had described to me the painful and drawn out process of both of their parents dying even when in hospice care. The only way to alleviate the pain was to keep their loved ones so full of morphine that they were basically unconscious often it would take weeks for them to pass. During this time my friends would call me and say, I just wanted to be over. I know my mom or dad didn't want it to end like this. They told me they didn't want this today. I am telling you that is not how I want my final hours on this earth to be when death is imminent. I want to be conscious of my loved ones around me as my already disease. Family members and friends prepared to greet me on the other side of death. I want to be on the arms of my husband with my Children nearby to wish we will on my journey to have this peaceful2881 transition for myself and for my family is not asking too much. It requires only human decency and compassion decades ago. It was my dying friend who begged for a peaceful death. Now it is my turn. I implore you to pass this2899 legislation and enable those who are dying and their families to have the peaceful transition they deserve. Thank you.
Thank you for your testimony.
Okay, I'm hanging up. Thank you. At this time I would ask David Nilsson to please come2922 forward.
David Nilsson.
Okay, We are keeping track of those who haven't been able to come forward when we've called and we'll try our best to circle back. Um at this time I'm going to call a panel and the four people2944 on this panel, starting with the first one that I call will be. Richard florentine dr thomas Sullivan dr Sharon quick and dr Farr curlin
Richard,
Yeah.
Richard florentine? Yes, can you hear me? We can hear you. Welcome. I'm afraid. I'm having trouble with the video. All right. And I started to hear you clearly though if that helps. Yes, okay, my name is Dr. Richard Florentine. I'm a retired general internists who has 30 years of experience working with vulnerable patients such as veterans with PTSD, opioid addicted young people, members of the developmentally delayed community and residents2989 of nursing home. I am speaking for myself in opposition to these bills which seek to change the longstanding precedent of seeing suicide as a condition from which citizens should be protected. And now seeking to introduce the practice of physician assisted suicide into the commonwealth. Although I have many reasons to oppose this legislation, I intend to focus on the issue of the unintended consequences of increasing the suicide risk to other vulnerable populations by providing justification for prescribing lethal medications from a physician to some in the community by the designation of a perception of decreased personal dignity because of disease or disability has been documented that most patients in the state of Oregon who requests for physician assisted suicide are not requesting it because of inadequate pain control, But rather due to3041 a decreased ability to participate in activities that make life enjoyable 90%, a loss of autonomy or a loss of dignity, which the state makes their lives feel undignified and less worthy of finding meaning in life. These criterion are for and to ask for NBC physician assisted suicide in Oregon are often the very same characteristics that Mark the life of patients trying to find meaning in life while dealing with chronic conditions such as veterans suffering from PTSD, a young person with an opioid addiction, Someone living with a developmental delay in the community or elderly nursing home residents living with the loss of mobility. These vulnerable populations also suffer with a higher risk of being devalued for their inability to engage in certain routine activities. Has been documented that the general suicide rates of patients between the ages of 35 and 64 increased by 49% in the state of Oregon since the passage of its P. A. S. Law there, as compared to 28% increase in the general suicide rate nationally, data collected by the U. S. Department of veteran Affairs has shown that the veteran suicide rate in Oregon was significantly higher than the national suicide rate in the 35 to 54 age Rain veteran suicide rates in Oregon were increased by 44% as compared to 33% for the veteran population nationally. Since the Oregon death with dignity act, the disability community has been strongly opposed to Pease and and fear and fear. They should as a very language used by the majority of3134 white well to do oregonians to justify their requests for Pease could become the same justification for a duty to receive physician assisted suicide for those who disabilities to save costs for insurance companies or money strapped government agencies, physician is suicide3150 physician assisted suicide laws, thus expand discrimination by its very language. In conclusion preventing physician assisted suicide is a good suicide prevention strategy at a time when the suicide rate is that epidemic proportions in the commonwealth.
Thank you. Please do feel free to submit more testimony if you need to. I will intend to thank you. At this time. I would ask doctor dr thomas Sullivan are you with us? Yes, I am Representative Decker Can you hear me? I can hear you welcome. Thank you for the opportunity to speak. My name is thomas Sullivan I'm a board certified cardiologist with over four decades of clinical care primarily in the north shore of massachusetts. I was the medical director of a long term care facility in Ipswich for 30 five years and I'm the current president of Senior care of the North Shore. I'm opposed to both these bills. I've been an active member of the american Medical Association as well as a past president of the massachusetts Medical Society and by the way, some of the statistics about physicians in massachusetts and the AM A have were misrepresented earlier. Ah I'm quite familiar with the spectrum of clinical practice, both in massachusetts and nationwide. I mentioned this because I understand that some legislators have mistakenly interpreted the small number of medical societies who have recently become neutral around the3238 issue of suicide. They think it's a sign that it's meth medically and ethically acceptable. This is a serious era and it reflects the lack of awareness of the profound changes in the patterns of clinical Practice over the last 50 years. one of the important reasons for this change from longstanding opposition is because in 2021 We have many specialties in medicine, particularly in massachusetts,3264 where there is little or no contact with dying patients and people with major disabilities. These physicians are uncomfortable and unfamiliar with end of life care and chronic disability. Unlike specialties such as palliative care, hospice oncologists and several subspecialties in internal medicine, the two largest medical associations in the United States, namely the Obama and the American College of Physicians have steadfastly held their strong opposition to assisted suicide. In fact, I was present at the A. M. A. Vote On their 70%. These are the leaders of of American medicine, 70 percent voted ah in opposition to these bills. In fact, the most recent chair of the AMA's Council on Ethical and Judicial Affairs is an academic psychiatrists from boston and chair of the ethics committee of the Harvard Health Plan Dr James Saban. I specifically spoke to him face to face after the am a vote and asked him for permission to use his name in opposition to these current bills and he agreed. In addition, these bills require that physicians falsify the death certificate set of documenting the immediate and real cause intentional lethal drugs for physicians. The requirement to participate and refer to someone who will provide deadly experimental concoctions makes us complicit in the active assisted suicide. This is right in3351 the bill. This is an egregious violation of our right of conscience, as well as the callous dismissal of over two millennia of basic sacrosanct. Universal Medical ethics. Please protect both patients and physicians and defeat these bills and let me finish by adding the doctor. Far Carlin was one of our panel members is actually leading a webinar on suicide at Duke University right now and I'm hoping that we can reserve a little time for him later to come3381 back after his webinar is finished. Thank you for your time. Thank you. Um At this time I would welcome dr Sharon Quick. Hi, I'm Sharon Quick, a retired physician in Washington State. I have expertise in pediatric anesthesia, critical care, pain management and medical ethics. I've taken care of many seriously ill and dying patients.
I and I oppose these bills. You may hear testimony that dying patients have unresolved pain and their only recourse is lethal drugs yet. I have never had a dying patient whom I could not make comfortable. The multitude of palliative care options for terminally ill patients, including terminal sedation as a last resort, leaves no excuse for failing to provide adequate relief for those near death. Pain is not a major reason for patients to seek lethal drugs, nor does3432 ingestion of lethal cocktails guarantee a peaceful death. No supervision is required. So patients may die alone choking on their vomit or wake up days later, not dead. A patient might change her mind about hastening death. But a greedy error could hide enough lethal drugs and grandma's food to make her sleepy, suffocate her and get away with elder abuse, coercion and murder. Under the loopholes in these bills, reports about suffering and terminally3458 ill patients should prompt us to ask3460 about better access to appropriate palliative care and deficiencies and some physicians use of it. There is evidence that minorities and disadvantaged the disadvantaged encounter barriers to receiving palliative care. It would be tragic for these3475 populations if these bills made lethal prescriptions more accessible than palliative care. Moore massachusetts. Physicians are being offered financial incentives to reduce the cost of care. Lethal drugs are cheaper than palliative care. Doctors and health organizations have an inherent conflict of interest. They make more money from patients who choose to prematurely in their lives. Patients in Oregon of the denied chemotherapy and offered lethal drugs, the option to die becomes the duty to die reversing the goal of patient autonomy. Autonomy is limited. No3508 one can control every outcome or obtain every wish choices that cause harm to others or society are prohibited. People have no right to consent to being killed, enslaved or maintained. Legalization of such actions undermines the very foundation of human dignity and equality and harms society. These bills harm society by violating the physician's role to equally value. Every patient's inherent unchanging dignity, no matter what their condition, patients are not given more control. Rather, doctors who have a financial bias for hastening death or granted inappropriate power to arbitrarily decide which people will be classified into an expendable group called terminally ill. Physicians become judge, jury and executioner. Such legislation results in distrust among physicians. In between doctors and patients. Doctors find their long time patients inappropriately and even over their objections, dead by lethal drugs at the hands of once trusted colleagues, coercion, inappropriate patient selection, botched attempts and active euthanasia occur. My state has adopted such dignity and autonomy destroying legislation. Don't let it come to yours. Especially since it may increase suicide contagion in the face of too many premature deaths and rampant mental health problems due to Covid. Thank you. Thank you. Um at this time I would ask Dr Farr curlin to please come forward.
I mentioned earlier he's teaching a webinar right now. So if we can reduce Yeah, we'll put them on the list. Thank you. Thank you. And I saw I called robert johnson earlier and I see that you might be on again, robert johnson.
Okay,
I'm going to move forward, robert johnson. If you're not there, I'm going to move forward.
Okay. At this time, I would ask for the next panel. Well, before we get to the next panel um I will call on dr Riki Greenwald
dr Riki Greenwald, are you there?
Okay. Um the next panel of three will be Patricia Stuart Myrna maloney Flynn and David franks if you would start in that orders. Um Starting with Patricia,
Good morning. Um I'm Patricia Stuart, executive director of massachusetts citizens for life and I oppose House 23 81 Senate 13 84. The words and the bills conceal an ugly reality. So I brought a bit of that3676 reality with me today. An exemplar of the lethal dose of drugs a patient must take to die. The drug is Ciccolo Barber to all the dosage is 10 g. The amount contained in 101 100 mg capsules That's equals 10 mg. Each must be opened and its contents emptied into a liquid like juice or applesauce. The next room assembly consumed quickly all at once.
The side effects include seizures.
Hello
Patricia Yeah, I'm sorry, can you hear me? Go ahead. Uh The bill sensible abandons the patient at this point we must look beyond its four corners for advice. Derek Humphrey, the founder and longtime leader of the hemlock society now known as compassionate choices promotes3744 the solution. In his book, final exit. He identifies some common sense ways to commit suicide that include using barbiturate drugs such as Ciccolo Barber Tal plus a plastic bag to be quick and absolutely sure. My personal choice he writes, He prescribes using a turkey size of Roaster Bag like this one And to elastic bands for best results in chapter 22, he describes how to commit suicide by placing the plastic bag over one's head? He explains quote the case for using the plastic bag is strengthened by the uncomfortable Dutch statistic that even3787 using powerful barbiturates, 25% of people may take many hours to die. The plastic bag is foolproof, unquote. Is this then the dignified death that his followers extol soothing words and comforting catchphrases in these bills can disguise, but they cannot change their grisly and dangerous reality. The goal is to normalise intentionally ending a human life and secret with3816 no witnesses, no doctor, no3819 record of the actual circumstances of the death, A falsified death certificates and thus no bothersome investigation and altogether perfect recipe for abuse the elderly in massachusetts are among the most at risk. Should these bills become law? Elder abuse is rampant in the state and growing 30,000 complaints were reported in 2017 to the Office of Elder Affairs if enacted, How many senior citizens will suffer a secret House 23 81. Death poisonous pills and plastic3853 bags are not solutions for the citizens of massachusetts where the ill deserve truly compassionate care, not killing for these reasons. I respectfully request this committee tonight. These bills a favorable report. I thank you for the opportunity to comment. Thank you for joining us at this time. I would invite Myrna maloney Flynn to step forward.
I think she is unable to be there today. Okay, thank you. Um and David franks, are you with us?
Okay? I think that I did see robert johnson was back. Mr johnson, are you able to join us?
Okay. Um I'm going to call the next panel forward and I'm just gonna say to those of you who are waiting, I know this is hard to know that there's a long list of people ahead of you. We have over eight hours of testimony and just to remind you that we ask you to stay on until your name is called. Um this is very similar that if you are actually joining us at the massachusetts state house, you would be in a room and having to wait this long as well. So we're trying to balance both the somewhat more of a convenience of being able to do this by way of zoom but also asking you to stay with us because we may not actually be able to get back to everybody who's been called um and hasn't been available when we've called your name. Um at this time I'm going to call on the next several people coming up will be in this order. Sarah Hartman, a Marie Wallace Tani morale and Fox and then robert Rebecca3958 Zhang. So I'm gonna start with Sarah Hartman, remind everyone you have three minutes and we will do our best um you will hear the alarm and we'll ask you to wrap it up so that we don't have to mute you and remind you you can always submit written testimony to us as well. So can you hear me now, are3975 you? Yes, there are. Welcome. Good morning chairman, Decker and members of the Joint Committee on Public Health. My name is3982 Sarah Hartman, resident of Maynard and I support the end of life option act and ask that your committee approved this bill. I offer my testimony in honor of my friend Miriam Hochberg, whose legal medication aided death I attended in California three years ago. I would like massachusetts residents including me some time perhaps if I had a terminal illness to have the same option for death with dignity that my friend had. I want to give you a more personal account of the use of medical aid in dying. When Miriam was diagnosed three years ago, a terminal esophageal cancer, she asked her doctors about the future course of her illness and probable type of pain and death to expect based on their answers. She anticipated being further unable to swallow and eat on her own increased pain, becoming physically dependent, feeling and looking sick as her body wasted and being physically cared for by others. Given her fiercely independent nature, living alone as a single woman and her strong needs for privacy and dignity. Miriam wanted to control the nature and timing of her death and chose medical aid in dying. She followed all the requirements of the California regulations. She was required to swallow the medications and worried she would be unable to do so as her disease progressed after she was approved. A pharmacist delivered the end of life medications to her home to use. When she was ready. Miriam knew she had the option to change her mind at any time. Either before or after receiving the medication. She planned the april 9th date arranged for her son and me to be with her and began getting her affairs in order and disposing4071 of her belongings. Hang on a second. On the day of her4076 death, beautifully dressed and lying on her bed, my friend took a series of three medications during4081 about an hour and a half, two in pill form in the third in a drink, as was previously mentioned. First, an anti in medic medication to prevent nausea which could potentially disrupt her death. Second, a beta blocker propranolol to slow her heart and maximize the effect of the last medication. And finally 92nd halls. The fatal dose of barbiturates each opened on site by two volunteers from compassion and choices and dissolved in Walsh water followed by some juice to ease the bitterness before handing her the terminal drink. The volunteer formally stopped and confirmed that Miriam knew what medications she would be taking and it's effect. She said, yes, Second malls and it will kill me within a few minutes after taking the last medication as her son and I sat and held her hands, her eyes closed, her breathing very gradually and quietly slowed and then almost imperceptibly ceased. Her strong heart continued to beat as I observed the pulse in her neck for a few additional moments and then it also quietly and gently stopped. She was at peace in summary. I asked the committee to support this bill for massachusetts residents who are dying of a terminal illness and seek to take control over the timing and quality of their death. They are already dying. They just want to choose how that happens and how long they suffer. Please give those of us who support this bill the option. It's a purely voluntary4157 matter. Thank you very much for your time and attention to this important issue. Yeah, thank you. Thank you for your testimony. I would ask if you've already testified. We see a few people please log off. Some people4170 are having trouble getting on and we just know that if you've testified and you log off you can watch it live streaming through the state house website. Um and if you stay on we will probably involuntarily log you off if we know you've testified already. So we just ask that you please do that for yourself. Um at this time I would call armory Wallace to please come forward. Yes. Hi, can you hear me? We can hear you welcome. I don't seem to have camera this morning, so I apologize for that. Thank you for being here. Thank you. Uh terminal diseases leave patients staring down a long and painful road to an unavoidable end. We know this As a nationally certified professional American sign language medical interpreter. Over 25 years of practice, I have worked closely with several courageous individuals and their families who were grappling with terminal illness and these end of life decisions. What I have witnessed is that palliative treatment is for some insufficient to ensure a death with grace and one without undue suffering. I have also personally witnessed and stood by a very close friend and his family during his painful death from liver cancer. This was a cancer that quickly metastasize to other organs throughout his body. He died at home in his living room surrounded by his family. He was coherent.4255 He had carrying around the clock hospice care and he suffered horrifically and to what end. This was not the way that this proud, courageous man wanted to die, avoiding intolerable pain and the indignity of living one's final days incapacitated4273 and in agonies any persons, political, legal, medical and moral right to choose to die under their own terms. People who are terminally ill must have the right to control the timing and the manner of their death. These are very intimate personal choices that a person may make in a lifetime And they are central to the liberty that is protected by the 14th Amendment. Every resident Massachusetts should be able to choose in consultation with their physicians and their loved ones, their own end of life care option according to their faith, their values and their spirituality. The bill contains many safeguards and the process to become eligible for. This option is robust. The patient must meet specific qualifying criteria without exception. No patient or physician who opposes medical aid in dying is required to participate in the end of life option act4330 Similarly, opponents of this option should not be able4334 to impose their own values on others who are suffering unbearably from a terrible illness. This law would set aside outdated and archaic government bans on a medical practice that is currently legal for 70 million Americans a practice that is validated, researched, effective4352 and full of safeguards to protect vulnerable populations and prevent misuse. If massachusetts has the wisdom to pass this law, we can assure that people are not forced to contend with the indignity of unbearable unnecessary pain of being excluded from making decisions about their lives and deaths and of being forced to relocate to another state to procure a death that is peaceful and on their terms. My hope is that massachusetts can be a leader in this regard And let's be the 11th4384 state. Thank you for your time.
Thank you for your testimony at this time. I welcome Tani War moral
th and I Tony Yes, I am here welcome. Can you see me here? I can see you and hear you. You have three minutes. So welcome. Thank you. I thank the committee for the opportunity to testify today. My name is Tony moral and I am a Hangem resident coming from a compassionate standpoint. I am in opposition of these4421 two bills and4422 I would like to share my personal story to explain why my late husband Paul fought an eight year battle against coal crap colorectal cancer. Six of those years were after being given a stage for diagnosis. Paul lived far longer than any prognosis ever given to him by his skilled doctors at Dana Farber. In fact, we even had an unexpected third child when his doctor said even that was not possible. Doctor's prognosis are often inaccurate and patients can live much longer and fuller than ever expected. When he passed leaving behind our three Children aged 10, 7 and three every unpredicted Day appalls life mattered. In addition to cutting short his unpredicted longer life by an unnatural death, the further tragedy would have been all that we would have lost. That often only occurs during the final and stage of dying. In the final heart wrenching weeks and days. As paul's warrior spirit and body were stripped away, he became more and more vulnerable. I saw him coming to grips with the inevitable passage that was before him in that time. Even while an oxygen week and coughing throughout paul painstakingly made individual videotapes for our Children expressing his love and hopes for them Paul and I cried together, prayed together, shared intimate conversations of love and forgiveness. Those conversations were so healing and they never would have occurred like that in prior weeks when he was feeling stronger and as I saw paul weaken, it helped me to loosen my desperate grip on my beloved husband and to be able to let him go as well Soon thereafter with hospice and with our 10 year old daughter Julia, who later said that if her dad had taken a cocktail to die, that it would have felt like a betrayal to her. Instead, she stroked his face and whispered, Daddy, you can go home now we will be ok and paul passed painlessly and peacefully. Truly, I tell you there's so much profound purposefulness in the final stages of dying. It was a sacred process that I never would have wanted to cut short and personally, I know that the subsequent grief that my Children4566 and I endured was immeasurably more uncomplicated and had more closure due to the natural process of death Together. The passage of these bills would not only cut shorter life that could. Black palls b unexpectedly lived4582 out much longer than predicted, but it cuts short the natural process of death that avails this unique and sacred space for extraordinary healings and blessings to occur. I respectfully ask this committee not to report these bills out favorably and I sincerely thank you for your time and consideration.
Thank you for your time and for your testimony.
Thank you
at this time I would ask and invite and Fox to please join us.
I can you hear me now? I can hear you an a muted and I turned the camera on. I'll start talking and maybe it will come on the um, but more importantly we can hear you. So oh good. I'm still sort of crying from that beautiful testimony. But um, I'm testifying, I'm from Needham and4640 I'm testifying opposition to the bills no matter what method is used or what reason there is if someone kills themselves that suicide and the community is traumatized and the people who know the person think what could I have done? How could I have helped um, compassion means suffer with, We offer people compassion, we offer them counseling and medical care and community support because we are so upset that they would take their own lives. The legislature passed a bill I think just a few weeks ago that makes it against the law in Massachusetts to assist someone committing suicide because we have such respect for life. I learned when my mother was 85 that people look at other people differently. She was very healthy but she was carrying too much going up the stairs and she fell, they took her to the hospital for tests and they would say things like, well she's 85 like we won't do as much with her as we would with someone younger or something. And I want to say to them? Yes, she made it to 85. I hope you will also. She must be very strong. But I realized that the elderly and as I've heard this morning, people with disabilities, people from minority communities, they are looked at differently now. The legislature has a very important role. Our laws say what we think is important. They tell us what are the primary things that we're most concerned4734 about If we passed this law, what we are saying is that we, as a society have one group of people who we will do anything to keep from committing suicide, but another group of people who somehow artist desirable or something. And we will not only allow them to commit suicide. We will make, we will facilitate and encourage it. So, I think the legislature has a real responsibility that when they pass a law, when you pass a law that you are showing what we think of the people who will be impacted by this law. And I don't think massachusetts wants to look as though we have a group of people whom we just don't have the same respect for. So I urge the legislature not to pass these bills. Thank you. Thank you for joining4788 us. Um, this time, I would invite Rebecca zeng to please come forward.
Rebecca, are you with us?
Okay, the next three speakers that are invited to come forward are dr robert Ferrell, Elizabeth DeCarlo and Janet Simon's folder. Um, I'll start with dr Ferrol. Are you here? I can see you. Yes I am. Can you hear me? I can hear you welcome. You have three minutes. Thank you. Representative Decker and members of the Joint Committee on Public Health and Senator come before I'm Dr. Robert Ferrell. I've been a geriatric psychiatrist for over 40 years, treating individuals and long term care facilities and consulting to hospice team members. So please,
I evaluate and treats those suffering from prolonged and incurable diseases. People faced with persisting deterioration in the quality of their life. Many4855 of whom ask me why they can't decide for themselves how much longer they must suffer. They have read how other states permitted person to make a rational decision to die at a chosen time. They realized that just having that right would prevent them a means of coming to terms with the terminal illness, knowing that others, however, are making decisions for them only provokes tremendous uncertainty and anxiety about how the ending will occur. How much pain will I have? Who will be there with me? The sense of helplessness is tremendous. If the person retains the capacity to make informed decisions. The ability to decide when to die provides a means, even if it is not used of being the master of ones destiny. The ability to have that power can promote a resolution are coming to terms with the illness process. I have often been asked to intervene. When a person has the capacity to make medical care decisions, but where the only recourse is to decide ending one's life by stopping to eat or take medications.
4933 This4933 way of ending their suffering is not a reasonable or less agonising way. I explained this to the patient is a slow way of not reducing the pain, reducing agony or providing4949 any dignity in the end. It is not a choice that they would wish on anyone since it neither brings a humane ending for the individual or the family or provides dignity in any way. It is not something that I condemn.
I have gone along with it because it is the only way that some people have of being able to in their minds humanely come to an end. While this option is tolerated by most practitioners, a large segment of society continues to struggle with the idea that control of the ending of the life should be in the patient's hands.
This bill would allow individuals to make end of life decisions for themselves. Not limiting them to refusing food or medication is the only option in supporting a vital role of the5005 individuals in maintaining self control and dignity, dignity. When physical functions have severely declined, we can foster a rational and humanistic approach to end of life decisions. Thank you. Thank you. Um At this time I would welcome Elizabeth de Carlo.
We can see you just take the mute5034 off. That Perfect. Great. Just a reminder to anyone else who testified. If you've testified and your panel is done, please do log off so that it creates more bandwidth. We are we are logging people out after a bit if they don't do it themselves and I do apologize but I appreciate everyone's cooperation as we try to do this virtually. Great. Thank you. Thank you. Chairwoman Decker um and to Chairwoman Comerford as well and all the members of the joint committee. Thank you for the opportunity to testify. You might notice that my name and my wife's name are both on on the photo because we're sharing a computer so please don't turn it off because she's testifying later. Um My name is Liz Di Carlo and I live in Mattapoisett. I come here today having survived HIV AIDS, the first pandemic of my lifetime as a registered nurse, I was on the front lines in New Bedford the city I love, we're drug using behaviors, put people at risk as much as sexual practices for becoming infected with HIV. We lost thousands of wonderful mothers, fathers, sisters, brothers, cousins, friends, and other family members and loved ones. We always talked about what we wanted for our Children, our community, our world and ourselves and we talked about how we wanted to die. Similar conversations are occurring now every day is people battle the second pandemic of our lifetime As the AIDS nurse educator. I was into prevention prevention of the deadly virus impacting us for the past 40 years. I always considered myself one of the lucky ones I didn't get it. So it was my responsibility to carry on the message that all people deserve to be treated with dignity and respect no matter who they are or what they do or did in their lives. And that includes while they are living as well as dying. I've also cared for many loved ones who were in there dying months. So I'm here today to carry on the voices of people from my past who implored me to give them the whole bottle of morphine at once. Please. This particularly request came from my born and raised in New Bedford5190 go to church every day italian american older friend who was dying of metastatic skin cancer. She was practical and would have been the first to have planned her exit from this earth in the way she lived clearheaded and peaceful instead of in pain and begging us to end her life Only. You can enable people who choose to have control over their lives and deaths to have this legal option. Not everyone is going to choose this path. And even in the other 10 states5229 in D. C. where similar laws have been passed for decades. Not everybody who chose the option. Use the option. It's a kind of security for those who know they are at the end of their life and want to have the legal option to end their life with dignity and respect. The powerful comments that I've heard this morning have been really overwhelming
and it is up to you, our elected officials to pass these bills Because the 70% of us Massachusetts residents who support legalizing the option
of medical aid in dying cannot do it ourselves. Thank you. Mr Carlo. If there's more that you would like to5278 add, please do submit it in written testimony and we appreciate your testimony and your service. Thank you. Yes. All right Janet Simon's folder.
Okay Janet
I'm here. Okay, are you? Yes. Hi, welcome. Thank you. Um Chairwoman Decker Chairwoman Comerford and committee members, Thank you so much for providing5309 me this opportunity to testify once again in favour of an act relative to end of life options. My name is Janet Simon's Folger and I'm here On behalf of my late husband, David,5321 who died on a 1st
2017 pancreatic. His first wife, joanie died at home in profound pain from ovarian5331 cancer. Dave did not want to die that way. Dave taught oceanography and middlebury Vermont before moving to Falmouth5338 to work in Woods Hole. He was a retired5341 Navy captain and his smile and enthusiasm or legendary. He passionately supported the right of self determination at the end of life. Day was diagnosed at5352 the top cancer center in Boston in January 2017 and began palliative and hospice care. Immediately we5361 attempted to move back to Vermont to take advantage of their medical aid in dying law. But his illness progressed far too quickly for him to tolerate the move. How is it that a law that is so full of compassion for terminally ill individuals in Vermont was so out of reach to my husband one state over is this justice Dave considered taking an overdose of pain medication to help end his suffering. But he worried about the ramifications for me. Access to this law that is being proposed to you now would have given Daves significant peace of mind and allowed him to maximize the quality of his last days. Dave had a pain pump surgically implanted to deliver. Dilaudid underwent palliative chemotherapy and took heavy doses of oral narcotics, his wonderful caregivers. We're unable to make his pain bearable. Dave stopped eating and drinking to end his pain. My husband was not suicidal. In the days before his death he suffered with agitated end of life delirium thrashing, please for help, laboured breathing and ever increasing and spreading pain. He was not a burden and did not feel a burden. It was a horrible death. I live in hospice care. It was a traumatic Experience for day for me for our five kids and other family who were with him 24/7. They begged me to fight for passage of a medical aid in dying law in massachusetts so that others would not have to needlessly suffer excruciating deaths. And I'm fighting. This is the third time I'm pleading for passage of this end of life options. Act Please please help all of the Dave's out there and move this bill quickly and favorably out of committee. Thank you so much.
Thank you for your testimony.
At this time. I'm going to call forward um four people and you're and you will come and order in which I called you. You have three minutes5499 and it's uh sergio Coello. Pastor Sandoval Pereira, Pastor luis Morales and Pastor Amelia Roach.
Sergio, are you here with us?
Okay? Pastor Sandoval Pereira, are you here?
Pastor luis Morales. Are you here?
Pastor Amelia roach. Are you here?
Okay? I'm going to move on and I'm gonna call out the next five names and you'll speak in order and then I call, you will be Catherine Atkinson, J. M. Sorrel Rebecca mcknight, Charles Francis and eric Hastings. Catherine, are you here?
Yes, I'm here. Welcome
Peisch Can you hear me? Yeah, I would ask if you or any chance or if you're logged on on two different um, computer again. Not in two different things. I'm sorry, hang on.
That will stop the pop noise.
All right. Is that better? Welcome. So sorry. Um, so I'm Catherine Atkinson. I'm a5588 family doctor. I've been a family doctor in Amherst Massachusetts for over 22 years. I take care of new born babies and elderly people and whole families and I really love what I do prior to being a family physician, I was an RN and I worked in oncology geriatrics and as a hospice nurse, I've really been on all sides of the life cycle and I love all sides of the life cycle and to me making sure that there's a compassionate way to help people die who want it at the end of life5616 is really absolutely necessary. I'm also very active christian um and I have never accepted money to withhold care from patients. And it always surprises me when people say things like that, I am strongly in favor of this. Um, I have so many patient examples. I couldn't give them all to you. Um, but one of the most poignant to me was a patient of mine who is another physician who had a brain tumor and she was suffering so much and I worked with her over a year to help her control her symptoms. Um and she and her sister came to me and asked me if I would please help her to have something um, to end her life because the pain was5656 just extraordinary. The seizures are terrible and she no longer can see um I was in a situation where threatened my keeping my license and even my liberty if I talked to them about this option and5670 it was awful and I felt terrible having to turn them away and not be able to offer them any help. Um, I had another patient who um I was absolutely miserable and told me she wanted to ask something, but she couldn't because it would risk my license. Um and when she finally did, she was a patient who was losing her vision. Um and she told me she wanted to end her life. It was a really beautiful opportunity for us to talk because he talked a long time about quality of life and care, and the fact that I was going to be with her the whole time that I was going to support her um and talk to her about depression and the fact that I thought that maybe we should try antidepressants because she was so depressed, she was losing her vision and and not because she was terminal. And we were able to turn it around in a very constructive and loving way. Um These conversations should be happening at the medical home and with the primary care doctor and right now they can't because we're all afraid of going to jail and patients are afraid of compromising our safety by even talking about it with us. I want patients to know that we will look at all different aspects of their care.5739 We will help to manage their pain and their dignity. And in the rare cases where somebody wants to have that control of knowing that they have another opportunity to end their life in a way that they can control. I'd like them to have that option. I don't think it's going to be very many of my patients, most of them, you know, with hospice, we are able to control their symptoms. Um, but it should be an option and um, the fact that other people are deciding what's best for my patients always remains a frustrating thing for us. I want to point out these are not suicidal patients in general. The ones we're talking about are people who have been fighting to live. They have been generally fighting their cancer for years and getting every treatment there is. Um, so we really just want to give them control and dignity. Thank you very much.
Thank you for coming forward and thank you for your work. Um, at this time I would ask Jm Sorrell, please come forward. Yes. Hi. Um, I appreciate it. Chairwoman. Um, I5801 support House bill 2381 and Senate bill 13 80 for the end of Life Options Act for nearly 20 years. I've been a health care advocate for older adults for LGBTQ people and for veterans. During this time I served on the Ethics Committee, Coolie Dickinson Hospital for eight years. I directed an advocacy program for people in long term care for 14 years and for the last three years I've served veterans with PTSD and an array of physical mental health issues. I've been an activist trainer and writer for LGBTQ and anti racism issues for most5836 of my adult life. Several years ago, I agreed to be profiled with a statement on the massachusetts death with dignity website. I observed too many deaths, scenarios for pain and suffering meant that the person didn't have the dignity of a good death and her, his family members were left with their own trauma surrounding the suffering. They would often ask me, what did we do wrong or why didn't her mom get to be free of pain and die peacefully. Some people are served well by hospice services and palliative care5866 physicians. However, the health care system at large focuses on intervention, even when futility and suffering and sue. This is unconscionable. Just as people have individual choices and paths throughout their lives, they also have individual needs. Their end of life palliative care, palliative care may not go far enough when someone wants to end profound suffering. I have served as a health care proxy for people who are full code and one interventions as long as possible and with others who, who are do not resuscitate types regarding serious strokes or brain damage. In each case, my role is to serve each individual according to her or his needs, not mine. This is the heart of the matter choice.5910 Some people have religious objections and others are worried about people with disabilities. I've worked as a disability advocate and I can attest that disabled people want to make their own choices and they do not wish to be paternalistically protected by the system anymore than veterans do. If I were crafting the bill, I'd have fewer restrictions for instance, to check on someone's mental health is subjective and not addressing the fact that most people are indeed suffering from depression when they learn they're going to die. I do understand the tests of competence to make the decisions to end of life throughout most of my advocacy work co presented at conferences and groups of hospitals and senior centers with attorney advocates to have paperwork in order. HCP most and D. E. P. O. A. All the things that reflect one's choices before becoming incompetent to make decisions. It would be ideal to add options as well. Several other states have this choice in place and as you know, not everyone needs to enact the options for themselves. The peace of mind factor cannot be underestimated for the person dying and5973 for their loved ones as well. This is long overdue. I think the committee for your compassion and sound reason regarding the end of life options Act. I've seen too many people die through increased suffering rather than an increased quality of life for the time they have this act is the least we can do in enlightened society. Thank you. Thank you for your testimony. Um, at this time I would invite Rebecca mcknight to come forward.
Rebecca are you with us?
Okay. Um, and if you don't make it on today, please do feel free to let folks know. Um we are happy to still take written testimony. Um I would ask Charles Francis, are you here with us? Yes, I am welcome. Thank you. Members of the committee. Thank you for the opportunity to testify before you today. My father in law was a great guy6031 but this testimony is only peripherally about him. It's Roy about his lady friend Rita who like my father in law was a widow they met, fell in love and their romance was like a dream. They were vivacious, fun, loving and and sparkling elderly couple who acted like teenagers and enjoyed every minute of it. Unfortunately their dream became a nightmare when Rita was diagnosed with pancreatic cancer. Excuse me. After lengthy surgery and many treatments over about a years time. The cat cancer metastasized and she was hospitalized. She was expected to live only a few weeks concern for her and6075 my father in law who was under great strain and distraught. I want to be with him over a weekend. We visited reader at the6083 hospital and she now, about 70 or £80 laid writhing in pain and moaning persistently. two nurses came in and asked us to leave before leaving. I had to ask why is she in so much pain. Can't that be turned up? As I pointed to the morphine drip gauge. They replied that they had both been6105 reprimanded by her doctor for increasing the dose when the pain was not being sufficiently abated. He said, I believe in miracles and don't want to give her too much. I cannot pretend to say why that what the doctors motives were for here later woman with no option to die peacefully being forced to endure a level of pain that someone else had6129 decided was right for her. He had no right to do this and it was an outrageous violation of her right to decide her own fate. During the end stages, I'm6140 such a vicious illness
6143 in6143 my, in my lifetime I've watched a relative and two friends go through agonizing deaths and it's time for this to stop. I implore you to get this legislation to the floors of6156 the house and Senate and get this bill passed. There's6159 one that's under time for you.
Thank you. Thank you for coming forward. Um at this time I would welcome ERic Hastings to please come forward.
ErIC are you with us?
Okay? I'm going to6180 welcome and carol
here, can you hear me? I can hear you. Welcome here You okay?6192 High. Um thank you madam Chairperson, The community members for the opportunity to speak against the end of life options act. My6203 name is an theriot from Wellesley. I speak for those in our commonwealth who are to down and out to consider that these bills6211 are not at bottom line about mercy killing. These bills support a culture of death that will expand. Leaving our Children and grandchildren with a nightmare similar to that of Canada's and some european countries, you6226 will have no control over the future consequences, being no longer6230 in office, the culture will change into a cynical death mode. First, we should not be using doctors as scapegoats for the murders6239 we commit of self or others. It will not serve residents in nursing homes and hospitals, making them live through these very depressing scenes. It also would make stealth euthanasia more acceptable. I may be staying in one of these facilities. Some Day second, the selfish pursuit from the money class harms the poor, disabled and underprivileged. These pro death organizations care more about the marriage of death with the bottom line culture and are attempting to take over our existence. They present6275 the same legislation year after year in order to wear6279 us down by attrition. They do not care about massachusetts residents. They care only about their own ideology, trying to subtly forcefully changed the world into something that they want. Where is the provision in these bills? To prevent the future editions of direct syringe euthanasia. Where is the provision in these bills to prevent the future addition of businesses harvesting6305 organs from euthanasia? This happens in Canada imagine someone who has not been successful in6313 life who has not experienced much joy. There are many of these yet who discovers from the doctor that he is dying. The insurance company offers him suicide pills. If he takes the pills, he is leaving this life without hope. On the other hand, if he is surrounded by a team of caring professionals who treat them with the respect and dignity he deserves. He begins to remember the lighter and better moments of his life and decides that life was worth living. He leaves the world full of hope. Leaving piece in his wake, physician assisted suicide. On the other hand, is known to leave spiritual and emotional scars on family members. That's because it's not natural. Therefore doctors just to side is a lie. It does not bring great happiness. Person is no longer around to boost in happiness. In summary, I agree with the testimony given by the preceding speakers and opposition and urged you to take appropriate action. Thank you again for the opportunity to speak against S- 1384 and H- 2381. Thank you for your testimony.
At this time. I'm going to announce that I'm going to welcome for people to come forward in this order. It'll be Diane Coleman and Summers Lindsay, barren and carol. Tyson. You each have three minutes. Welcome Diane are you with us?
Diane Coleman? Yes, well you here right here. Okay, welcome.
My name is David Coleman and I founder and president of Not dead yet Since age 11. I've used a motorized wheelchair. I have long outlived my prognosis
About 20 years ago I started using breathing support at night For the last six years. I've used it about 22 hours a day without it, I would go into respiratory failure a diet a fairly short time as a person whose life depends on medical tree. But I would be able to qualify for assisted suicide at any time if I lived where it's legal as an Oregon. Officials clarified in writing any person who becomes terminal because they do not receive treatment for any reason, such as lack of insurance coverage or classically deductibles or government budget cuts in health care would qualify under an Oregon type block. In fact,6469 many conditions will or may become terrible if routine treatments or medications are discontinued, such as insulin, blood thinners, a pacemaker and countless others For over a year by breathing support had a $500 per month copay, which I had to pay out of pocket till my employer changed6490 health plans. If I became despondent, for example, if I lost my husband or my job or felt like a burden and decided that I wanted to die, I would be deemed terminal and would not be given the same suicide prevention as a non disabled and healthy person who despaired over those things. Since early 2020, the COVID pandemic has revealed that people with disabilities and bed denied treatment due to pervade some health care6521 provider biases about our quality of life. It's all too easy to write us and other minority groups off is not worth worth the effort. Mhm assisted suicide laws are inherently discriminatory against older, ill and disabled people did I equals suicide prevention and instead providing suicide assistance is a violation of the americans with disabilities act. The data from Oregon's assisted suicide program substantiate these concerns and others expressed by the disability community today. Please refer to my written testimony which analyzes the Oregon detail Day in detail. I urge you to vote no on the massachusetts assisted suicide, dull the dangers of terminal uncertainty. Medical mistakes and financial pressures are simply too high.
Thank you. Thank you for your testimony. Um At this time I welcome ANn Summers Macintosh, are you with us? Yes I am. Thank you. Welcome. Thank you. Chairs and vice chairs. Thank you for the opportunity to testify at this briefing. I'm ann Summers McIntosh, the executive director of the National Council on disability and C. D. Were a federal advisory agency to the president and the U. S. Congress That since 1997 has advised federal and state policy makers of the dangers of legalizing assisted suicide on disability rates grounds In 2019 released new research on the topic which advises again states not to legalize any form of assisted suicide or active Euthanasia Is comprised of presidential and Congressional Lee appointed Council members who are the federal voice for over 61 million Americans with6632 disabilities across the country. Congress has charged are agency with6636 promoting policies, programs, practices and procedures that guarantee equal6640 opportunity for people with disabilities and empowering people with disabilities to achieve the goals. The americans with disabilities act, which is a law that we first recommended and drafted ourselves Over 20 years after 1997 report on assisted suicide. We again recommended against legalization of assisted suicide and urged states and the federal government to ensure that people6662 with disabilities have comprehensive systems of assisted services and supports and that medical providers receive training and disability competency and disability risk factors for suicide. Although not all people with disabilities are terminal. Nearly all individuals who are terminal are people with disabilities and C. D. Has a long history of shining a light on an explicit and implicit bias against those people with disabilities, particularly in the health care system. From our 2019 report, we examined information from6692 over 20 years of annual reports from Oregon's experience and found that their law had many disturbing trends. Of note. The top five reasons doctors give for their patients assisted suicide requests are not paying or fear of future pain. That alone is noteworthy But psychological but psychological issues that are all too familiar in the disability community, loss of autonomy, 95 Less able to engage in activities, 94% loss of dignity, 87% losing control of bodily functions,6724 56% burden on others. 51%. These reasons are not directly gathered from the individuals themselves but are gathered by6732 proxies after assistant that suicides have already occurred. This is concerning source of potential error and without any way of validating the reports. The fact that the reporting forms include these particular check boxes to indicate patients reasons means that these reasons were viewed6747 as acceptable from the beginning of the law's implementation. Yet these yet they are based on an uninformed analysis of how to address common disability related experiences moreover by rendering them acceptable explanations for requesting assistance in one suicide. These laws are communicating dangerous discrimination filled messages to people with disabilities and the public that common disability experiences like requiring assistance with personal care activities are understandable and acceptable grounds for ending one's life before the pandemic entity. I was meeting with the congressional office about our findings and they commented um yeah, I had please feel free to admitted are Okay. I have submitted our full report from 2019 to the record. Thank you, thank you very much. Um at this time I would ask Lindsay baron to please come forward.
Hi there, thank you for the opportunity to testify today. My name is lindsey barren and I work as the policy director for the National Council, an Independent living, a national process ability grassroots organization run by and for people with disabilities. We stand with many other national in massachusetts disability rights organisations in opposing an act relative to end of life options. The disability rights community has long believed physician assisted suicide laws posed grave risk to disabled people for people experiencing terminal illness, disability almost always accompanies that process and the resulting functional losses6838 become pivotal to the decision making process. Disability is an inextricable piece of this conversation. There's a whole list of reasons why we oppose assisted suicide. What I'd like to briefly address today is a significant risk of abuse disabled folks face when assisted suicide is legal, disabled people and older adults are at much higher risk of abuse, coercion and exploitation. All these risks are heightened in the face of assisted suicide becoming legalized and the safeguards people claim exists are truly insufficient when it comes to protecting vulnerable people. When proponents of legalizing assisted suicide claims, safeguards will prevent abuses from occurring. The truth is, these safeguards are incredibly ineffective when coupled with problematic monitoring and a lack of meaningful oversight and enforcement mechanisms, they may as well be non existent proponents will tell you abuse of these laws are rare, but the truth of the matter is, this system6891 was not set up to find them an Oregon. For instance, when concerns about abuses were raised, Dr. Katrina Hedberg of the Department of Human Services said we are not given the resources to investigate and not only that, she added, not only do we not have the resources to resources to do it, but we do not have any legal authority to insert ourselves Abuse of disabled people and older adults was on the rise before the COVID-19 pandemic. And it has increased even more sense if assisted suicide becomes legal and air and abusive caregiver. Caregiver, anyone can steer someone toward assisted suicide. They can serve as one of the witnesses to the request. They can pick up the lethal dose, they can administer the drug. Who would no, no witnesses are required to be6932 there at the time of the death and with no resources or authority to investigate concerns and therefore no real safeguards. There are no real protections in place. Assisted suicide is often hailed as strengthening autonomy and increasing people's choices. That is a beautiful ideal. But when people facing terminal diagnoses, face emotional or financial pressure from family or caregivers or worse, that does not reflect the unfortunate reality. I urge you to listen to our concerns and the concerns of your disabled constituents where assisted suicide is legal. There is no doubt that some people's lives will be ended by coercion and abuse. We've seen it happen, it will happen again and until we can be sure that it won't assisted suicide laws are dangerous for patients and bad for the commonwealth of massachusetts. Thank you very much. And I will be submitting additional testimony uh, by email. Thank you. Thank you for your time. Um, I want to welcome Miss carol Tyson.
Yeah. Hello, Good afternoon and thank you for the opportunity to speak today. I'm testifying on behalf of the disability rights, education and defense fund or dreaded. We urge your strong opposition to the end of life options Act, which would legalize assisted suicide or aid in dying. The bill is dangerous and would have unintended negative consequences for people with disabilities, low income individuals and people of color who already face discrimination and unequal access to quality health care. Dread if is7023 a national civil rights law and policy center directed by individuals with disabilities and parents who have Children with disabilities. Our mission is to advance the civil and human rights7033 of people with disabilities, including ensuring our access to adequate health care and services. Durant if believes strongly that there are deep systemic problems that make the legalization of assisted suicide. Bad public policy should the end of life options act become assisted, become law assisted suicide becomes the cheapest treatment available. An attractive option and a profit driven health care system in which financial pressures already play too great a role. If insurers deny or even merely delay approval of expensive life giving treatments, patients will in effect7069 be steered toward doctor prescribed suicide. For example, patients. Barbara Wagner and randy Stroup oregonians with cancer were both informed that their plan would not pay for their7080 chemotherapy but would pay for7082 their assisted suicide 64 year old Wagner's insurance refused to7087 pay for a $4,000 a month drug to treat her lung cancer, but offer instead a physician assisted drug that would cost $50. In addition, as has already been noted, populations that currently lack equal access to quality care services or supports and face discrimination may be offered assisted suicide at greater rates. These disparities cannot be ignored. Studies have shown that black people are less likely than non hispanic whites to be referred for cardiac procedures to receive opiate pain medication in the er or7119 to be referred for kidney transplantation. Once on dialysis, Many of these same disparities are true for the hispanic community providing a cost cutting treatment such as assisted suicide7130 in a system that is not meeting the needs of those whose health care costs are highest and7135 who face discrimination is dangerous. People with disabilities, the elderly and chronically ill in black indigenous and people of color will be disproportionately impacted. Finally, I acquired my disability through a traumatic and near terminal accident. It was7151 due only to my privilege and my access to resources that I was able to return to my home rather than a long term care facility and that I am here with you today. Health professionals, family members and strangers have all voiced their sympathy regarding what my life would and has become the stigma of living with a disability is prevalent. Had assisted suicide been legal and offered as an option. There were times when I likely would have accepted. I am deeply grateful that it was not an employer committee members to focus on improving care supports and services include Bristol Thank you. Thank you. Um at this time I'm going to read off a list of names of those who will be asking to come forward Ethan ruby. William Densmore. Mark7196 Peterson and Sharon Loberg will start with you Ethan, are you with us?
Ethan ruby.
Okay. William Densmore?
Okay, Yes, I'm here. Okay, who are you? William Densmore? I just turned on. Yeah, no welcome. Um, my name is Bill Densmore. I grew up in Worcester and I have lived since 1983 and Williamstown, I'm a former journalist, editor in tech entrepreneur and I've uploaded written testimony uh, in support of these bills, which I will, I thought I would briefly summarised, but I think I'm going to take a lot less than three minutes because I want to say that I've been really moved uh, this morning by watching everybody speaking and realizing how heartfelt this is for everybody. And so I, I do not want to in tune anybody's motives or anybody's point of view on this, but I do feel strong in what I'm going to say now six years ago I testified before this committee and provided a written statement favoring an act affirming and terminally ill patients right to compassionate aid in dying.7266 The four words I keyed in on at that time were burdened control religion and choice since my 2015 testimony, we have six more years of experience today. There are 10 states plus the district of Columbia which have adopted some approach to compassionate, dignified end of life opportunities and we've learned five things that I can think of, 70% of massachusetts public now supports legalizing the option to request carefully supervised And compassionate medical aid in dying about 1/3 of patients who request and receive medication to aid in ending their life don't take it.7302 But they have peace of mind. There have been no reported allegations have been voluntary assisted deaths that I'm aware of. Although it's interesting some of the testimony of the opponents this morning that I'd love to look into a little more less than a month ago, California extended its end of life option law from 2025 until 2031 by really wide legislative margins. All of these laws, including the proposals that are before you are entirely opt in. As far as I can see when terminally ill and mentally competent, you have to ask for guidance from your doctor. Nobody is forced to do anything but they can plan. I do think it's interesting some of the, some of the concerns of the disability community and other people who have had really positive influences with7346 an end of life experience without the this kind of bill, it really will be important if this becomes law for there to be close monitoring of how it's used so that if there are abuses, they can be addressed. I do think that these bills are not about taking lives or about hasty mutilating self inflicted suicide. In fact, I wish people will scream when I say this, but in some ways we need to come up with another term for suicide under these circumstances because it just doesn't feel right. That that's what you want to call it. But it's about giving doctors and their patients the right to decide when and how death believed in good faith to be impending and inevitable can draw near with the most compassion and least pain or unwanted intervention. If we really believe that God alone dictates life and death, we should stop meddling with life prolonging medicine. We should stop sending people to war and we should end health debilitating poverty. I don't know if I can get this all done, but I want to end by just quoting jerry Brown's signing statement when he signed the law in California. Okay, I don't have time. People can look that up in my written testimony. Thank you appreciate7418 the heartfelt best of everybody else who is talking today. Thank7422 you for your time at this time. I'm gonna ask Mark Peterson to please come forward. Thank you. Can you hear me? I can welcome Thank you so much. I'm so glad to be able to be here and to share my thoughts on this. I'm a retired psychologist. I was born and brought up in Newton, massachusetts. Um I have been teaching about end of life planning for the last 11 years. And I've written a book called your life, your death, your choice how to have your voice to the end of your life. And I have submitted testimony, but I'm going to just tell you a brief story about my mother. She was an avid golfer. She was an A Voracious Reader, a poet and a writer. She weighed 200 lb, 1923 when she was 16 years old. She was prescribed camp for cigarettes to treat her persistent asthma And she smoked cigarettes until she was 75.
Um She at that point was diagnosed with COPD and was confined to her house. Of course she couldn't play golf and she couldn't move about much. She had an oxygen concentrated that operated 24/7.
So at the age of 78, she informed us at Thanksgiving that she wanted to die. She couldn't read because her eyesight was failing. She obviously couldn't play golf. There are very few things that she could do even to get out of her house under the circumstances. She said she had nothing left to live for and she desired to die. We were shocked. We didn't know quite how to respond,
but we did by giving her as much support as we could to, as a testimony to the kind of tough woman, she was, she went to her CPA and asked Um if it was better to die in 1986 and 1985, I imagine. It gulped and he said Yes, it's actually better in 86. So on January eight, my mother stopped taking medications that sustained her comfort and sustained her breathing. She stopped eating, she stopped drinking and she took to bed where she panted from a lack of oxygen, oxygen For five days before dying. So she had no7578 quality of life and she did it on7581 her own. This shouldn't happen. She should have had an option. She was not depressed. She was very clear she wanted to end because there was no quality remaining in her life. And I7593 am very proud of her for doing that. So thank you very much for allowing me to share this story of my mother's passing.
Okay, thank you for coming forward for your testimony. Um at this time I would invite Sharon Loberg to please come forward.
Yes, can you hear me? I can hear you. Sharon welcome. Thank you. Chairs and vice chairs. My name is Sharon Loberg and I'm from sandwich. I support the end of life options. Act Bills 1384 and 20 House 23 81. I'm well acquainted
to observing it suffering from incurable illnesses. Not only7638 because of my career as a registered nurse and working in hospice during a portion of that career, but because I witnessed and tried to provide comfort to my loving family members since they died. Like many others, death is not my greatest fear it is suffering. My mother's diagnosis was in stage Gall bladder cancer with only 3-4 months to live following chemotherapy, she was admitted into home hospice
soon after. Her veins were unable to handle comfort, ivy hydration. It had been a number of days that she had been unable to swallow to eat or drink. Her veins had collapsed and she was now begging, yelling for water as her sunken eyes followed me. My dear mother was dying of thirst, hunger. In addition to her cancer7684 pain. My prayers could not help the pain. Meds did not help. Nothing helped. She held one more time just before she finally died about seven weeks after being in home hospice she had received loving care, but the suffering from the cancer, pain, the thirst, the hunger, the bedsore infections, the muscle contractions, urinary tract infection, hallucinations did not allow her death to be peaceful.
My younger and only brother died in June 2020. He had undergone double lung transplant seven years prior due to severe lung fibrosis. He wanted to live and took a chance due to complications. He lost the function of his left leg. He did not7729 complain much at first regarding the loss of his leg and the slew of anti reject section meds he took daily and the many hospitalizations that followed when hope was still present. He once wanted to live despite it all, but that change. The neuropathic pain had become intolerable in his non functional leg. The constant struggle for air, the inability to sleep to rest, constant bouts of pneumonia, gasping for breath, the pain of muscle contractions, the inability to control his bowels and urination, the inability to toilet to wash himself to focus or to think clearly the agony of being alive. He was ready and wanted to die. He did not tolerate the suffering. He could not tolerate the suffering any longer, but there was nothing anyone
else could do give him relief at that time when there was no hope for his recovery. He died during covid in his home. I could not be there for him while dying With uncontrollable suffering is horrible in any situation. The nature of our current health crisis makes this much worse. I wish my brother had been able to access medical aid in dying the time to best passed. This bill is now the citizens of the commonwealth7806 cannot wait any longer. Thank you for listening. Thank you for coming forward with your testimony. Um, I'm going to announce the next panel and just remind folks if you've already spoken um and testified, Please log out and just come back and join us watching livestream through the Houses website. If you're not signed up to testify, please log off and come on and watch it through the test through the state's livestream. That's because it's, it's for a variety of reasons. This virtual life is a little challenging and we find the more people that are on the7842 harder it is for some people to log on to testify. So,7846 um we're just grateful to have the technology in general so we can still hear from all of you.7852 So thank you. At this time I will call for names and ask you to come in order. Um I want to welcome pastor manual silva pastor release Sanchez Almeida, Pastor Williams Almeida and pastor um ali's Arguello um at this time I welcome Pastor Emanuel Silvia are you with us?
Hello, this is pastor7877 release. Um Pastor Silvia was in a funeral this morning, was hoping to reconnect afterwards. Um so he may not be on OK, why don't you join? Um and come forward past release. Thank you for being with us. Thank you for having having me on behalf of our congregation um and myself at7898 least Almeida, wife of William L Mirra we are pastors of the church uh here in western massachusetts centro de Nueva. And um we strongly oppose the Senate Bill 1384. In the house bill 23 81. Besides our deep faith establishment biblical principles regarding the value of life, who gives and who takes takes it personally. This issue on physician assisted suicide hits very close to home. Um several years ago my father had developed acute pancreatitis which resulted7933 in kidney failure intubation and his prognosis was one of long term care with a short life expectancy. Nonetheless. As a family, we chose to continue his iCU care at the hospital and prayed that he would regain his health Despite the bleak prognosis today, my father is a living testimony that when one says life is over another in this case,7957 God ultimately had the last word. If we would have solely rested on the negative outlook provided by medical professionals, we may have not been able to experience many more years with our father and see a miracle made manifest when we allow policies and show social issues such as this to impact life decisions. We are ultimately placing the decision for life or death in the hands of the family, usually ones that are emotionally unstable, a sensitive topic to deal with. And of course on the patient who also is facing physical and emotional um, heartache. Various statistics7995 and studies have determined the following in adequate pain control is not among the top five reasons patients in Oregon and Washington have requested legal drugs, lethal drugs, inadequate patient referrals for psychological evaluations are made to determine the proper mental state so many times these patients have not been reevaluated to to make sure that they are um making sound decisions. And as pastors, we've seen many families go through heartache through through illness and we've had to sit down with families who had to make very difficult decisions of whether or not to stop life support, etcetera. And there's always that remaining factor. What if so I strongly encourage and ask this committee and I thank you for this opportunity to please take in consideration our community uh specifically are hispanic and latin community that is not well representative represented in this call today. Um We value family, we value the sanctity of life From conception to death. And we urge you to consider our population and the votes that we did in 2012 that strongly opposed assisted physician suicide. This is not a decision solely on a patient, but a family unit. And we strongly encourage the opposition of this bill. Thank you so much. Um my husband, William Almeida is not able to attend this call, but his his statement and testimony was submitted um, and is on on file. Thank you so much. Thank you for coming forward.
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