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What are my Options? MAID in Hospice Care
MAID Webinar Recording
MAID Webinar Recording
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Welcome, everyone. Thank you so much for joining today. My name is Gina Parisi and I serve as the Executive Director for HMDCB and we're really looking forward to hosting today's session. Before we get started, I just want to share a few HMDCB updates with everyone. First, just a gentle reminder to please remain muted. Unless you are speaking, we will have a time for Q&A at the end, so you're welcome to put questions in the chat box. A few upcoming HMDCB events. So we have our first coffee chat of the year on February 20th and then we'll host our next webinar on March 18th and that will focus on hospice core roles and responsibilities. And then our initial application will open January 27th, so it's a great time to encourage your non-certified colleagues to become certified. And if you are due to recertify this year, you can complete the longitudinal assessment by October 31st. I also want to share with everyone that if you'll be at this year's annual assembly, they'll be hosting a long session on medical aid and dying that we really encourage you to attend to further expand your knowledge on this important topic. It will take place Thursday, February 6 at 1pm and you can add it on as an add-on session for free with your registration. So you can visit the AAHPM website to register for this. And I also want to thank Gentiva Hospice for their generous support. Gentiva has sponsored HMDCB's webinar series for the past several years and we greatly appreciate their partnership. And if you would like to learn more about their organization, you can visit their website at gentivahsp.com. And now I want to introduce our faculty for today's session, Dr. John Helphorn, Dr. Robin Plummer, and Dr. David Wenzel. Thank you all so much for being here with us today and sharing your knowledge with us. I'm going to read their bios to give you a better understanding of their background and who they are, and then we'll get into today's session. So Dr. John Helphorn is a palliative care doctor at Brigham and Women's Faulkner Hospital and Dana-Farber Cancer Institute, both in Boston. He is also an assistant professor at Harvard Medical School. He began his career as a primary care internist in Brunswick, May, and then worked as a hospitalist and later a hospitalist director at both community and academic centers. In 2012, he changed to palliative care practice following his strong and growing interest and experience in end-of-life care. Since then, he worked as an ambulatory palliative care clinic at a cancer center, a hospice house, an inpatient palliative care unit, and as a palliative care consult. His interests are in medical ethics, including MADE, and the overlap of palliative care and ethics. Thanks to you, Dr. Helphorn, for being here today. So instead of Dr. Robin Plummer joining us, Dr. Plummer practiced emergency medicine in New Jersey for over 30 years. In 2008, she moved to New Zealand, where she continued to work in emergency medicine, but also pursued her interest in end-of-life care by working in several hospices and completing a postgraduate diploma in hospice and palliative medicine. In 2017, she returned to the States to help care for her father, who had Parkinson's disease. She served in both inpatient and community hospice settings in New Jersey for four years. Following the passage of New Jersey's medical aid and dying law in 2019, she pursued intensive study of the field by collaborating with experienced MADE clinicians in California, Washington State, and Oregon. And then in July of 2020, she started a practice devoted to MADE, which embodies her passion for intensely personalized and comprehensive patient care. Since starting her practice, she and her partners have personally attended over 120 MADE deaths and have become proficient in managing special situations for those patients who cannot swallow and require an alternative route for self-administration of MADE medications. Compassion and Endings New Jersey continues to encourage those in the medical community who wish to become involved by MADE by mentoring and teaching. Thank you, Dr. Plummer, for being here. And finally, we have Dr. David Wenzel joining us. Dr. Wenzel attended family medicine residency in North Iowa at Mercy Medical Center. It was during his residency that hospice and palliative medicine became a recognized specialty, and he became the first HPM fellow at Mercy Medical Center, North Iowa, in the summer of 2006. He also helped start the Palliative Medicine Consultation Service at Mercy Medical Center, North Iowa. After moving to Kansas to become the first CMO of Midland Care, he had the opportunity to start a palliative medicine clinic in a community oncology practice at Cotton O'Neill Cancer Center, as well as help Midland Care grow their PACE program. In 2020, Dr. Wenzel joined True Community Care as the chief medical officer to help them grow their hospice and palliative medicine, PACE, and home health programs. He is very interested in medical ethics and completed a year-long certificate program in medical ethics at the National Catholic Bioethics Center during his residency. Thank you all so much for being here today, and I'll now hand it over to Dr. David Wenzel to start our presentation. Thanks, Gina. Thank you so much. It's great to see everyone, and we have a really wonderful panel with an excited discussion today. I am the past president of the Hospice Medical Director Certification Board, and so one of the first things I want to do is talk about why we're hosting this. So we are hosting this webinar based on feedback from our certificants about information that they want with regard to About Maid, specifically how to speak with patients about Maid and the physician's role in that process. So I'm in Colorado, where we have End-of-Life Options Act, which makes Maid available to patients, and as a Hospice Medical Director, I encounter this pretty frequently. One of the things that sometimes comes up is the question about HMDCB and its board in terms of do we have statements about Maid or that sort of stuff, and the answer to that question is no, that HMDCB is a certifying board. We rely on the American Academy of Hospice and Pelvic Medicine in terms of education and direct source material around Maid. We're just providing information based on certificate feedback, so HMDCB does not have an official statement and will not publish a statement because we're a certifying board. We just simply provide information and help our certificants get the information they need. So living in Colorado and working as a hospice physician in Colorado, we do have many patients that come to us, especially when they enroll in hospice, that have questions about Maid. We certainly provide them with all the information they need to actually get in touch with the providers who do the examinations, determine whether someone's appropriate or not, and ultimately write the prescriptions for Maid. We also support patients when they ask those questions and want to pursue that. As a hospice, we don't discharge them or turn them away. We make sure that our teams continue to provide support to them and their families all the way through the process, even up into the patient taking the Maid medications and making sure that their families are supported and that we're there to support the patients if they wish to pursue that. Our official stance in Colorado at our hospice is engaged neutrality. The same stance that the American Academy of Hospice, Spelman Medicine has on Maid and patients who are asking for or wanting information about it. We never abandon patients or turn them away. We always take care of them and make sure that they have access to the care that they're requesting. I'm really excited to hear from our other two panelists today because of their active roles and how they approach this. I'm going to turn it over to Dr. Halporn, and he will continue this discussion. Thank you both, Dr. Halporn and Dr. Plummer, for being here today. All right. Thank you. Hi, John Halporn. I'm going to share my slides. Dave or Gina, can you wave to say my sound sounds okay? You sound great. Yes. Okay. Okay, good. Let me hold on a second. I'm going to share. Okay. Slide show. Okay. This is a talk that I've given a few times in different places about what Maid is and what we should do about it as clinicians. I'm always interested in suggestions or feedback. I try to come across as neutral because I am neutral about this. I want to help you understand what this is, what some of the detail is that you need to know, and then focus some on how to prepare myself and my organization, if necessary, to respond to this in a way that makes sense and is legally safe for me. Some people worry about that, and that makes sense for our patients. Similar to what David said, the emphasis on not abandoning our patients, who often ask us about this at a very delicate time in their lives, and they're not sure what they're asking for much of the time. I have no interest to disclose. This topic requires two funny disclosures. These are my opinions, not my employer or professional organization. As I'm sure you're aware, this is not medical or legal advice, but it's, as you'll see, a delicate topic. We're going to talk about legal, ethical, practical dimensions, an approach to counseling, and just the details of where and how Maid. We'll hear more from both David and Robin afterwards. As you probably know, there's the politics around Maid, and some of the dialogue and rhetoric can be very charged. These aren't perfect definitions, but we need terms to use in this discussion. I'm just going to lay these out for us. Suicide, act of intentionally causing one's own death. Assisted suicide, again, intention but with the aid of another. Physician-assisted suicide, when the aid comes from a healthcare worker, physician, or APP. The aid is either information or a prescription for medication. Euthanasia, a very loaded term, which really refers to someone other than the patient making the decision about the rightness of the killing. Applied to situations of mercy. People often use the example of domestic animals at the end of life for suffering. Palliative sedation, we all know, is a separate process with the intention of lowering awareness, including unconsciousness, for severe symptoms. Intention being changing awareness and relieving suffering, not end of life. Finally, medical aid in dying, which is a very precise definition here. Provide a physician providing a competent, terminally ill patient at the patient's request with a prescription for a lethal dose of medication that the patient intends to self-ingest to end his or her own life. Some legally very important words there. Competent, decision-making capacity, terminally ill, six-month prognosis, patient makes the request, lethal dose of medicine, and then this interesting self-ingestion. The patient has to, under their own power, in some states with assistance, but the patient initiates the movement towards ingestion, and ingestion legally using the elementary tract, by mouth, G-tube, or rectal catheter. I'll tell a little story, and I include this to give an example of sometimes the sideways or underprepared approach that the clinician gets from their patient. They don't ask you straight out most of the time, will you help me with MAID? As a palliative care doctor, I saw a 71-year-old woman with advanced ovarian cancer, had two admissions for bowel obstruction, had available chemotherapy with very high symptom burden. She was independent in her ADLs, could walk a few blocks, she was rather thin and losing weight, and she used, as needed, hydromorphone 2 milligrams every three hours as needed. She got 90 a month. She thought it worked pretty well. You know, and you think, well, this is pretty straightforward palliative consult. And then she said, you know, doctor, I've saved three months worth, if I take all 270 tablets, will I die comfortably? And I'm sure other people have had kind of funny questions or bizarre questions like this that catch you by surprise. This certainly caught me. And in talking to her about this, she lived with her husband. She had not told him about this. Her hope was to take her pills, all of them, go to sleep, die in her sleep, have him find her, having died comfortably overnight. The answer, will I definitely die with 270 tablets? The answer is probably, and that's the problem. And just talking to her about some of the alternative things that could happen. He wakes up and she has aspirated and is gurgling. He finds her cool and cyanotic. He calls 911. The story comes out. She hadn't thought of these, and she was horrified to think what would happen to her husband, his sense of betrayal. And this is not an unfamiliar patient thinks on their own and needs quite a bit more information to know. I was fascinated by the question. I was an ethicist already at this point. And how much can I talk about it? And what should I say? And what is the right thing to do? I've learned much more about that. And that's partly what we're going to talk about. In this story, the patient's reasoning was fascinating. She was born in China, had been a graduate student during the Cultural Revolution, had been tortured and denied food. And she saw her future as similar to that kind of suffering. And she had promised herself, I'll never go through something like that again. And that was her reasoning. We met with a husband. This is what she wanted. We called the son who lived in Washington. Luckily, she moved there. She was healthy enough to have at least I think it took five months. She had time to get there, establish residency, meet a made physician. And she had what her husband described a beautiful ceremony with the family. They prayed. They had a small meal. She had a beautiful red silk dress. This is a tassel from it. And then she went upstairs, took her medicine and died peacefully. So I hope we all have such a peaceful introduction, successful. And I'm curious to hear other people's stories of how did I first get asked about this? Or how did I figure out what the patient wanted? A quick review of made history. And this is to make several points here. One is to separate made from Final Exit, Hemlock Society, Exit International, organizations that describe self-deliverance, the assert the right to suicide, publicize ways of ending one's life peacefully. We're often lumped together with them. This is a very different process. Many people often equate or connect this with Jack Kevorkian, who you probably remember from Michigan, a pathologist who in the 1990s began offering to terminally ill patients the ability to end their life with medication. He used IV, sedatives, pain medication, and actually paralytics. He finally was convicted of manslaughter by the state of Michigan after he recorded a patient death and it was on 60 Minutes in 1999. The other important thing we'll talk about in a second is a Supreme Court ruling that established that suicide and assisted suicide was not a guaranteed constitutional right, which many people had argued it was. Most people know that Oregon began Made in 1997 with a referendum question joined by Washington, Montana, 12 years later. This is a picture of Brittany Maynard, who you may remember, a California woman in her 30s who had an advanced GBM, who knew very clearly that she did not want the future of her disease as it progressed. Made was not available in California at that time. She moved to Oregon and completed this in 2014. She made many videos. Her husband still advocates on her behalf. After her publicity, many more states, California, Colorado, Washington, D.C., Hawaii, Maine, New Jersey, most recently New Mexico in 2021. Most recent developments, the establishment of a professional organization, American Clinicians Academy of Medical Assistance in Dying. The founder, Lonnie Chabelson, is a palliative care doctor in San Francisco. And then in the last five years, two states allowing non-resident Made based on their constitution, not allowing the prohibition of providing it to non-residents. Just a quick note on the Supreme Court, two unanimous decisions, Timothy Quill, you may have heard of, arguing equal protection, that discontinuing life-saving care, for example a ventilator, is equivalent to taking medication to cause death. Unanimously rejected, those are not equivalent. And then due process, that suicide and assisted suicide are protected liberty and interests in the constitution, absolutely rejected. This placed the creation of made in the states, that there was no federal loophole to allow this. Then the Oregon Death With Dignity Act, DWDA, the referendum that state voters approved, shall law allow terminally ill adult patients voluntary informed choice to obtain physician's prescription for drugs to end life, 1994 passed by 2%. A referendum is not detailed, it needs a law to spell out the operations, and this was battled in the courts for three more years, until the Death With Dignity Act was passed. Another referendum attempt to repeal, failed by 20%. Remember, Alberto Gonzalez tried to challenge the use of controlled substances, that failed in the Supreme Court, revised 15 day waiting period, and then revised residency requirement. One point to make about all the laws, is that you'll hear from patients and advocacy groups that this is a right, that death with dignity, death in the face of terminal illness is a patient right. The law says just that you will not be subject to liability of professional disciplinary action for participating according to the rules. So it is a waiver or a release from prosecution for manslaughter from a legal perspective. It's not establishing that patients have a right, and this is important because physicians are not required to participate in any state where this happens. But as you'll see and hear, I'm sure you have, that the dialogue can get very heated on this point. This is the structure of the law, which is almost the same in every state. Begin with the Oregon example. Patient makes a verbal request to a physician. It's usually an oncologist, primary care physician, neurologist, someone that they know, doesn't have to be, but often it is. Then the law requires these sequence of steps. A second physician has to confirm that there is a terminal illness, six-month prognosis, and that the patient appears to have intact decision-making capacity, understands the risks of what they're asking. Some states require mental health approval. There's an asterisk. My state is trying to pass one that has a very vague mental health approval requirement. Fifteen days elapse. There's waiting periods. There are states where there's a waiver of the waiting period if the patient may lose capacity or lose the ability to self-administer in the 15-day period. Not every state has this. A written request follows. It has to be witnessed by people who don't have a financial or other interest in the death. The physician reviews all the pieces before then to confirm that all the requirements have been met. This is where a residency requirement may be applied. Massachusetts would have that where I practice. Patient has an opportunity to rescind. A distinct question, would you like to rescind your request? And the final step, the physician provides a prescription. There's a bit more detail, but this is the key part, that there's two physicians involved. There's a waiting period. There's a witnessed request. The physician has to ascertain that all the steps have been met, and then there's the provision of a prescription. Here's where MAID is allowed. The light blue are legal states with the dates. The dark blue are states in which it is currently before the legislature. It can be legalized through a referendum, however, that's a two-step longer process because you then need a law to flesh out the details, and so all the current efforts that you see in those states are in the legislatures. Two things about the states that allow non-resident MAID, Oregon first, and then Vermont. The details, and these are two organizations that assist patients in finding information about MAID and actually pursuing it, are very clear that you have to take the steps in the home state in Oregon or Vermont. In Massachusetts, we have lots of questions about telemedicine to a Vermont doctor. Can I have the medication mailed to me? The answer is you have to go there. You have to go there twice, two weeks apart. The medicine has to be delivered to a Vermont address, and in most cases, it has to be ingested with a Vermont physician present, so you can't think about doing it back in your home state. The risk is not to the physician in Vermont or Oregon. The risk is to anyone that helps you complete this process outside of the state, and so they warn just about the legal liability in that situation. A couple words about who campaigns about this, and I'm going to show you three groups. The arguments against MAID are very strongly from the Catholic Church, and it goes to their organization that sets doctrine, Congregation for the Doctrine of the Faith, and it's absolutely prohibited. They call it euthanasia, grave violation of the law of God, very consistent that this is morally unacceptable. The other voice you'll hear is the disability community, and it's not unanimous. There are disability advocates who argue for MAID in some special situations, but this is a very loud group in general against for concerns that this is the government's interest to reduce the expense of caring for people with disabilities, that MAID is easier for than providing equivalent or effective services for disabled people, and particularly in Canada now, this is a very hot political issue, and there are places in Canada where it is probably easier, much easier, to get MAID than it is to get accommodations for disability. The last organization is kind of the umbrella advocacy group, Compassion and Choices, a national group with chapters in every state, who strongly advocate for the availability of MAID for all patients. It's quite an effective organization in many areas. They advocate for the equivalence of hospice and palliative care for people who are not choosing MAID. They have very good informational resources for patients. It is not unbiased, however, and this is one of our, patients will ask us, well, where should I read about it? It's hard to find places where they won't get a sense of the preference or focus of the organization. That being said, Compassion and Choices is pretty good, as well as some of the other ones we'll talk about in a minute. I'll just say that Canada is in the news for MAID for several reasons. The primary difference is that in Canada, it's not self-administration. Physicians may administer medications enterally or parenterally, IV, and the adoption of MAID in Canada took off when this changed. The Canadian constitution did not allow them to specify that it had to be enteral. There's no requirement now for terminal illness. This is an evolving situation, but it now includes the enduring intolerable physical or psychological suffering cannot be alleviated. As you've probably been aware, that this now is going to include psychiatric illness, although it's not been finally approved. They're continuing to delay the definition because it's so morally tricky and controversial. There is a waiver of final consent. As you can imagine, a patient with dementia who wants MAID, it's very hard to be within six months of death and also have intact medical decision-making capacity. There's a mechanism in Canada to specify that you want this at some point in the future, even if you lose capacity at that time. And then finally, major differences provided by the national health insurance are equivalent of Medicare, but for all Canadians, and that is a requirement of Canadian MAID is that patients be covered by Health Canada. So Americans can't go there and receive MAID in almost every case. The adoption in Canada, 4% of deaths are now MAID deaths higher in some provinces, six and change in Ontario and continuing to rise. The red part on the top is the adoption of patients without terminal illness. Interestingly in Canada, the majority of people who practice MAID are family physicians other than palliative internal medicine, geriatrics. Just a review of laws in other countries. We've talked about the USA, future requests, not available, self-administration required. Canada, we mentioned, Switzerland, often in the news in which assisted suicide without the presence of a terminal illness is legal. No future requests and it is self-administered. And then the Netherlands, lasting and unbearable suffering, but not necessarily terminal illness. They commonly call it euthanasia, no residency requirement, future requests are allowed and self-administration is not required. So quite different and I found as an ethicist wanting precision in the language, you have to really define exactly what we're talking about. What happens in the Netherlands is very different than what happens here. Very good data from Oregon. Part of the law requires them to report on utilization. Blue are deaths, I'm sorry, orange are deaths, blue are people who receive prescriptions. And it's about two thirds of people who receive the prescription take the prescription. One third don't. And the report is that this is all an autonomy argument, that I have the capacity if things got bad, if I need to use it, but not everyone does use it. And there are some cases where people die before they can use the prescription. Similar two thirds in the other states where it's legal. This is a busy slide, but I think we'll hear some from Robin as well, about the current prescription and the evolution of the drugs used. It began with Pentobarb and Cicobarb, probably borrowed from the capital punishment process in prisons. The problems with that is that it didn't always work quickly. There were more than two day dying processes at times. With the addition of cardiotoxic drugs, Digoxin and Amitriptyline, the median time to death is much shorter, which was one of the goals of people that did research this. So the range, I'll just give you an idea, and Robin might talk to us more about this. Five minutes to 68 hours with a median of 42 minutes. This is the prescription, DDMAPH, it's called. Patients pre-medicate for nausea and vomiting with Zofran, Reglan, 30 minutes before. And then the prescription, and notice these are grams in some cases, 100 milligrams of Digoxin, about a year's worth. Similarly, Diazepam, a gram, 15 grams morphine, Amitriptyline, eight, Phenobarbital, five. It's mixed in about two thirds of a cup of liquid apple juice, and it comes as a compounded powder from a compounding pharmacy. There's detail about who might be unsuccessful, people with gastroparesis, very opioid or benzo-tolerant patients, and concerns about swallowing and obesity. A fascinating read is the material on the ACMA, American Clinicians Academy for Medical Assistance in Dying, has very balanced information for clinicians and for patients. A little bit about what should I do this, and how do I decide? Not many of us remember exactly what oath we took at medical school graduation. The initial original oath of Hippocrates prohibits giving a lethal drug to anyone. The amended version, which most of us took, began in 1964, which allowed the ability of physicians to participate in pregnancy determination, allowed participation in the death of another human with great responsibility. The World Medical Association Declaration of Geneva prohibits this. Our organizations, AMA staunchly opposes, ACP joins AMA, AAFP is neutral, AHPM neutral, NHPCO opposes, Hospice Palliative Nursing and my organization, Mass Medical Society, are neutral. There's some good stuff written about what criteria do people use for themselves? Will I participate in this? The best way to boil it down is this moral absolutism versus relativism. Absolutism is medicine is healing. This has no connection to healing, I cannot do it. That's the moral absolutism. The relativism is medicine is an imperfect science and art. There are situations for which this makes sense. If I am careful in how I do it, I can accept doing it and I find it the right thing to do. We meet, all of us know people in both camps. Much written about the ethics of this 20 or 30 years ago by some of the leaders in our field, Timothy Quill, Susan Block, Andy Billings, Dan Meyer. This is just a blow up of that difference. The last section I'm going to help you with is what do I do at home and where do I start if my organization doesn't give me good guidance? I think that most hospice organizations are much more clear than palliative care departments or palliative care practices. The reason being there's some very clear legal balance for what hospices can do. One of the sources, NHPCO guidance, their general sources about made include the text of the federal law that says federal funds cannot be used for any part of this. That is a relief. It makes it clear that hospice funds can't be used for this. What hospices may do to collaborate is a fascinating topic. I think we'll hear some more about it. The actual purchase of the medication, the delivery of the medication, the administration of the medication all have to be very carefully planned and separated. Most people that I've experienced who ask their organization, what can I do? From their leaders, they get this kind of uncomfortable silence. You learn that health systems don't want to go on record saying what their position is. Certainly religious-oriented organizations that are against made will be very clear that they don't support it, but no one wants to be out front or in the newspaper supporting it when they don't know what their peers are going to do and particularly around the time that the law is passed. The dialogue and rhetoric before the date of passage changes entirely after the passage. Most state laws, when they pass, there's a 90-day implementation period where health systems realize, we've got to be ready for this deluge, this gigantic process. Up until that point, it's very hard to know what they're going to do. People should know, particularly in non-made states, what I can legally say to patients, what my organization is comfortable with me saying. There has to be a way for people to conscientiously object and opt out of providing information to their patients, but there probably needs to be a way to say, I will refer you to someone that can help you with that. Some very doctrinal religious organizations say you can't even refer, you must stop the conversation. Most non-religious organizations are going to end up saying, you have to have some way of providing the patient the information. And then the visibility, I have palliative care people say to me all the time, why me? Why do I have to be the person that's the source? And the answer is, be careful about that. But the reason is that you have the skills and the knowledge. You're already talking to the person about the meaning of their life, their prognosis, how they want to spend their time, and this is a natural extension of that. And you can inform them without advocating if that's the position you need to be in. Many sources describe this, AAHPM has a good section as well as an HPCO. But the first question about MAID is often a distress signal. Sometimes someone will come right out and say, I'm aware of MAID, I'd like you to be my MAID prescribing physician, tell me the steps I should take. But more often it's, can you help me if things get bad? I don't know what I'm going to do and I have some ideas if I'm really suffering. Do you say, are you thinking about MAID? No. You say, can you tell me more about that? What are you worried about? They may be somewhat evasive, it may be circular. At some point you can say, are you asking me about medical assistance in dying? We want you to focus on the patient's distress and exactly what are they asking you? And that is insight into what is going on for them. Similar for families as well. This idea of how much you're comfortable doing, and then if you're in a practice group, knowing what your peers are going to do and being comfortable with, if I have a colleague who must opt out, how are we going to handle their referrals? And this idea of comfort with what each other is saying. We've talked about this, clarifying what they're asking, state what you can do, depends a lot on your state. And then the last two slides, it's helpful in departments to finally give people information about MAID that is blessed or approved by your organization. So we found, I work for a big health care system in Boston. They were comfortable, chief medical officer, with something called a study guide. And so this was not a position statement, it was not policy. We were surprised at the very end that they put their name on it. They were nervous about that. But the question that really was provocative was, we promise cradle to grave medical care. Do we want to provide a way to answer our patients' questions about this current medical topic? And the answer to that is yes, they can't say no to that. The question of how are you going to do that becomes interesting and political. What we said in this policy document is much of what I've described about being ready, knowing what people are comfortable saying, have the option to opt out. And then one thing that physicians will be very focused on is, what can I legally say? And I'll give you an example. We spent a lot of time with our general counsel, who also, this made them very nervous, as you can imagine. But what is potentially illegal? And it comes down to what implicates you as collaborating in medical assistance in dying. And that would be a heck of a lot of collaboration to be worrisome. So for example, can you describe MAID and how it works in legal states? Of course. Can you talk to the patient about what it would be like going to a state where you could do it? And these are people who either establish residency or they go to a non-resident state. Can you refer a patient to a MAID provider? Yes, you can. It's just like any other referral. You can write a letter. You can provide medical information. Can you determine if they're eligible? Can you determine if they're eligible? We heard caution about this because patients often are desperate and feel very pressed for time to complete the MAID process. They've learned that it's cumbersome. And you need to support that cautious approach. This takes two weeks. There's a bit of travel. It may take three weeks. You have to find a place to stay. You have to find a physician who is willing to work with you. If you look on the Vermont and Oregon websites for non-residents, they want the referring physician now to tell the patient and to write in the referral letter, I believe there is a six-month prognosis. That's something we're used to doing as hospice and palliative physicians. So that is not a stretch for us. But the phrase that the ultimate decision is up to your Vermont doctor, I can help you get ready. This is what I think they would consider about your eligibility. But no promise about their eligibility. And then the last thing, and this applies to more than just MAID, is that it's probably ethically risky to say, I think MAID is the best option for you. You can certainly support patients. If you're a MAID doctor, you can carry them through it. But the idea of suggesting to someone that medical assistance in dying is better than their other alternatives is ethically fraught. Because of your position of authority, the patient comes to us because we know something about what's ahead for them. And similar with if someone is asking you, how else could I end my life? For example, VSET, voluntary stopping eating and drinking. Physicians are very hesitant to say, well, you don't have to eat. You could die that way. We'll help the patient, but we don't want to be the person that provides the idea. And I'm curious what our other panelists have to say about this. It's delicate for everybody. These last two pages, the institutional guidance and legal guidance, are quite state-specific. So make sure you talk to your lawyer or risk manager, that kind of thing, about how it might be for you. There's lots in the public media. You may have seen this In Love, Amy Bloom, excerpted in the New York Times about Amy Bloom and her husband, who had early dementia, who went to Switzerland for assisted suicide there from an organization that allows this kind of tourism, it's called. And then you may have seen this documentary, which has been adopted by Compassion and Choices, Last Flight Home, about a man with advanced CHF who used Maid in California. It's a beautiful story of very well-delivered palliative care, which at the very end includes a lethal ingestion, but how any of us would want it to be, with attentive clinicians and family and exquisite attention to comfort. That's the end of my talk. I think I'm even a little bit early. We'll move into what Robin has to say. I'm curious for all of your questions or ideas, and I'm happy for you to contact me afterwards as well if there's more there. So take it away, Robin. I'll stop sharing. Here we go. Okay. Hello, everybody. I'm not really sure, I guess. Can you hear me okay, Gina? Yeah. Okay, cool. All right. So I'm here to represent the doctor who actually practices aid in dying. And as Gina mentioned, when I started out in my career for the first 30 years, I was an emergency doctor. And I often like to say to people who ask me, why did you pick to do aid in dying? Do you like to watch people die? My answer is not so much that I like to see people die, but I know what a bad death looks like. And as I'm sure you can imagine, working in an emergency room, people who would come in either with trauma or infection, most of the time they and their families were not prepared. They were not ready for the person to die. And they had pretty bad deaths a lot of times, not to mention all the stuff that got done to them in hospitals. And of course, that still happens a lot now. Now, when I switched over to hospice palliative care, it was a big change because at least we didn't have to be torturing people in the hospital anymore. But there were still a lot of people that had long drawn out deaths. And there were people who would spend a lot of time either in an inpatient unit or in their homes, being unable to communicate and frankly, losing their dignity. And a certain number of people would ask, and this is before New Jersey passed the law that I was aware of, you know, can't you do something? Can't you give me a pill? Can't you make this end quicker? Now, because I've worked around the world, I can tell you that hospices around the world pretty much have the same philosophy, which is to say, we treat the symptoms, but we're not allowed to make you die faster or slower. That's pretty much the philosophy. Now, medically, even dying kind of takes it to another step. And it says for a person who does have good mental capacity, who meets the criteria of having a terminal illness with a prognosis of less than six months, and who has carefully thought about this, and that is part of the two-week qualification, why should they not be entitled to end their lives the way they want? And I just want to say, I've now done almost 200 medical aid in dying deaths. I've been present at most of them, which is, I think, probably more than most palliative care physicians have been present at some deaths. And no one picks this because they want to die. None of my patients would choose this as an option if they could live. And by the way, that's one of the reasons that those of us in aid in dying really cringe when we hear the term suicide, all right? Because physician-assisted suicide, oh, it does make me cringe, OK? The term suicide, to me, and I think to other philosophers, ethicists, not that I'm one, but people who study this, have said that suicide essentially is a term that really refers to people who choose to lead this life, but they could keep on living. Whereas medical aid in dying is more to do with someone who, sadly, has a terminal illness. They're going to die. And it's more a question of, can they have some control over that? And frankly, that's a pretty big deal. Even for someone who's laying in a hospital bed, whether they're at home or in an inpatient unit, and they don't know exactly when they're going to die, they don't have the opportunity, necessarily, to bring their friends and family in and have everyone be with them. And as strange as it is to think that you might choose the day of your death, now that I have attended quite a number of maid deaths, I can't even explain to you how tragically beautiful it can be. But people do get the opportunity to make the most of their precious time, to say goodbye over a period of a week or so to those that they care about, and to choose who's going to be with them and kind of set the stage. And my children keep telling me I need to write a book, and maybe someday I will. But some of the pictures that come back to me, because I remember pretty much every one of them, one was a lady who was 97 years old, who, when I walked into her house, had her wedding dress laid over her on the bed with her arms through the sleeves. So it looked like she was wearing her dress with a... She had her veil, and she had a little bouquet of flowers. And when I walked in the room, her face lit up. And she said, I'm going back to meet my groom. I've been waiting to be reunited with him. And there are many people where I walk in the room and their faces light up. They're waiting, usually because they've been suffering for so long. And it does come down to that. Now, for me to assess the amount of suffering is not part of the maid law. And I feel like people don't have to justify to me how much suffering they have. That's not part of the US law. But in fact, everyone in their own way really is. They've decided what their quality of life is and whether it's acceptable to them or not. And by the time that they reach this thoughtful, careful decision, they are ready. And they do get to say goodbye with grace and dignity to all the people around them. I had a guy recently with ALS who could barely be off his BiPAP. And he had his friends and family sitting in the room with him. He took the mask off just for a few minutes. And he said, I really want to thank all of you for being here and taking care of me, which was a couple of really beautiful last words. Then he put his mask back on. And then he pushed his medication. And again, for the family to see someone fall gently asleep and not be struggling and not be in pain anymore, their face is relaxed. They're no longer short of breath. I think that that makes the grieving process a little bit easier for them. It's also interesting that families often comment, wow, they really suck that medicine down in terms of people who are taking it orally. Or wow, they really push that syringe with intention. I think it really helps the families to know that it was the desire of the person. And just to speak to the mechanics of it a little bit, for the most part, within 5 to 10 minutes after someone ingests the medication, they fall asleep. The longest I've ever seen is 20 minutes. And statistically, so far, 80% of people die within two hours, 90% within five hours. We now are getting to the point where we can definitely pinpoint the people who are potentially going to have longer deaths. It does happen. There's a great article in our, we have a journal now called the Journal of Aid in Dying Medicine. And I think Dr. Jess Kahn, who I think is here, wrote a very good data review looking at the lengths of time that it can take for people to die. But the key thing here is that no one wakes up. And what I say to patients and to families as well is, you're going to fall asleep within 5 to 10 minutes. And it doesn't really matter how long it takes after that because you won't be distressed. Now, my personal feeling is that it's important to have a medical person present. I think this is too big a deal to just give a prescription to a family and say, there you go, just take this when you're ready. So the way that I run my practice, and there are a number of other people who do this, or there are some states where they have dedicated volunteers. But I think it's important to have an educated person sit with the family for, if possible, the whole time. Because it's a pretty terrifying thing for a family to go through, not knowing what to expect, not knowing that the funny kind of breathing noises people might make are not a sign of distress and that they're OK. And to reassure families, if maybe it does take a little longer, that yes, it really will work. Not to mention, I don't know how we would expect families to decide when death has occurred. I mean, that's not something that your average person knows how to do, right? So it's, to me, having done emergency medicine for a long time, it is an unbelievably sacred honor to be with people at this time and to essentially be drawn into the fabric of their family. Not just on the day that I attend, but because there is this two-week qualification period, I become pretty involved with the families as well. But again, being there on the day and learning how to sort of be present without being front and center and letting the family be with their person is a pretty incredible thing. So I could give you a whole lecture on the mechanics of it, but I don't think that's actually what Gina and HMDC wanted me to do. But I do want to say that I feel like there's so much anxiety on the part of hospice, palliative care, palliative care in hospitals about doctors feeling that they're complicit in this decision. And no one is being forced into this. This is completely voluntary. The bigger problem really is people hitting barriers in trying to find out how do they access this law, this program. I had one family who said to me, between our family, we have four PhDs, and it took us three weeks of searching between Google and online. And people constantly tell me in hospitals, they're always asking, how do I access this law? And I know that they are speaking with people who know about it, but they're told, well, we can't tell you, we're not allowed to discuss it. This hospice says they can't talk about it. Just so many barriers. So yes, I totally understand that not every doctor is going to want to participate, and that's okay. But knowing how to refer and doing it in a timely fashion is really important. Because the biggest problem that I run into is people who find me too late or start the process too late and do not make it through the 15 days. People who really desperately want to have that kind of an ending, and they just can't because they can't make it through the 15 days. I do think for the states that now offer a waiver for people who can't get through the 15 days, that that's a great thing. We don't happen to have that in New Jersey. But a lot of times that would not happen if they were able to find a participating doctor when they asked. Now, a lot of the hospices that I deal with don't want to actively participate. And they use the same term that's been used here, studied neutrality. But neutrality shouldn't be that you're not gonna tell someone how to find a doctor, right? And so I think that's like one of my biggest pleas to hospices is you know how they can find me or other doctors in New Jersey and people sort of play possum and pretend that they're not going to. So a couple of things I just was thinking of as you were going through your presentation. One is I feel like sometimes in hospice and palliative care we're trying to figure out ways to deny patients what they might want to choose. Again, I'm never gonna tell someone this is the right decision for them. It's always gonna be their decision. It's pretty unusual however, that by the time people find me that they decide not to go forward with it. Unless of course there might be family issues, there might be religious issues that happens. My statistics are nothing like the chart that you showed about only two thirds of people participating. Number one, I don't have my patients fill the prescription until maybe a few days before they wanna use the medicine. Cause I don't think it's something you should be sitting around in someone's house. So given that they get to the point that they make the choice, pretty much all of my patients will choose to take the medication. Now, sometimes they qualify. And again, I have patients sometimes for months up to a year. I had one gentleman who came to me when he told me that he was diagnosed with leukemia. It was very aggressive. His doctor told him he was gonna die in two weeks. He said, I hope I make it through the 15 days. So we started the procedure to qualify and then they put him on a clinical trial and he went a whole other year. And during that year we stayed in touch with, I would call him periodically and check on him. And he said, listen, I'm doing great. He said, but I know at some point this is gonna fail. And sure enough, at the end of the year, he called me and he said, you know what? It's not working anymore and now I'm ready. So he didn't put off this decision because he changed his mind because he just didn't wanna die before he had to. It's also been my observation that people usually pick a date very close to when they probably would have died anyway, which is really very interesting. Comes back to the control thing. Here's someone who's in a situation where this disease, whether it's cancer, ALS, end-stage heart, whatever, has basically taken away their sense of control in their life. And in a very important way, once they make the first request to me, people will often say, oh, I feel like a weight has been lifted off my chest or I feel like I have insurance now. This is my policy that I don't have to have a terrible end, that I'm not gonna suffer more than I need to, okay? So the sense of control is really very critical. That's what we give people back. Let's see. So not having to justify their decision I think is important. The issue about barriers from other doctors, from hospices, from hospitals, I feel like a lot of times I'm just hitting my head against the wall by trying to explain to other doctors that they don't have to be the ones who participate or write the prescription. In New Jersey, as it is in many other states, where you need a second doctor to be the consulting doctor, I have to reassure the consulting doctor that they're not the ones putting the pen to the paper or in these days, electronic prescribing. They're not writing the prescription. Their role as consulting doctor is basically to confirm that they know who the patient is, that the patient really does have the disease that they say they do. In other words, go through the medical records, that it's a terminal illness with an expected prognosis of less than six months and that they're able to make their own decision, right? That they have mental capability to do that. And that's really all that the consulting doctor has to do. Okay, all the rest of the coordination is the prescribing doctor. In a lot of the paperwork, by the way, that's referred to as attending doctor, but we've been using the term prescribing because I've had some attending physicians say, well, I'm the attending. Well, I don't wanna have a fight about who's the attending. It's the prescribing doctor. So I kind of work parallel to hospice in most cases. That's the best option is when I have a patient, whether they've already joined hospice or if they're going to join hospice, I kind of know at this point which hospices are made friendly. And I will say that as this becomes more well-known, because even now I'm constantly running into doctors who have never heard of it, the hospices that are kind of hostile toward aid in dying are definitely gonna lose their market share. And I think that's something that they do need to pay attention to. Because if patients will now ask me, is this hospice gonna work along with me? I know which ones will and which ones won't, and that's gonna become an important thing. So hospices need to kind of pay attention to that, I think. Somebody's putting some notes here. Wanna say something about ACA Made that Dr. Halpern mentioned. ACA Made is, I think as of today, changing their name. They're now gonna be AADM, the American Academy for Aid in Dying Medicine, or something, aadm.org. Great resources on there, both for families and also for clinicians. One of the slides that Dr. Halpern showed showed a booklet called the Aid in Dying Booklet, which is available for free on the website as a PDF download, so families could go there. And it's very comprehensive, talks a lot about how to make the decision, talks a lot about particulars of what the aid in dying day looks like. It's a great resource. Also on that site, there's information for all different clinicians who might, oh, he's putting the screen back up. Okay, that's it, right. The Aid in Dying Book written by Dr. Schabelson is for families, but also for clinicians. What you're not showing on here, because it's been updated, is that we now have two journals, okay? One was published last year, one just came out with some academic articles and research data articles on aid in dying. But there are also a lot of videos and informational segments for both doctors or nurses that might attend or social workers or how to talk to patients about this and lots and lots of different resources. In some states where there are not physicians who can attend, people are being trained either as volunteers or doulas, there's also educational stuff on that. And I mean, I just wanna say that I feel like when I started my career in emergency medicine in 1980, that was kind of the frontier of a new area in medicine. Emergency medicine really was emerging at that time. And I feel like aid in dying is having its moment now. Like we're kind of on the frontier of a new age of medicine here too, because people don't necessarily just wanna accept the status quo about having a long drawn out death if they know that that might be in front of them. That said, only a very small number of people are ever going to choose this, okay? I mean, I don't know what the percentage is, but it's probably under 1%. But I have learned over the past five years that it's also a very particular kind of personality that chooses aid in dying. These are people who are, I describe as fiercely independent and very, very resolute in their decisions, which is why it's more than two thirds of the people that end up taking the medicine, because if they make the effort to find me and go through the procedure to qualify, they are planning to take the medication when they can. But again, it's a small number of people. And I feel a little bit impatient when I see some of these groups, like the disability groups, because they're not eligible anyway. First of all, aid in dying is always going to be, or I hope it will be in this country, a voluntary thing. And second of all, you have to qualify. And this is a very moral group of physicians across the country who are very careful to adhere to the requirements of terminal illness, less than six months. Everyone's quite careful about it. There's just no cavalier behavior in this area. Everyone realizes that the stakes are too high for that. So I think I might just open it up to questions because I'm sure you have lots of questions. Again, I just want to say that I could do a whole lecture on just how people qualify and those details. And if anyone in this group would like that talk, just contact me personally. And we give lots and lots of talks, my partners and I, that could go over all that. But I thought for the purpose of this seminar, I'm answering more about general philosophical questions about aid in dying. So Gina, I wasn't watching the chat, but do you want to go through the chat and ask questions or just open it up to people? Yeah, we definitely want to open it up now. If you do have questions, I know there's some in the chat, which you'll know about Dr. Plummer, but please feel free to come off mute and ask questions or put them in the chat box. Do you want to read them out or do you want me to go through the chat here? Yeah, there's quite a long one here from Dr. Howard. So Dr. Howard, if you're still on, feel free to come off mute and ask about this. And he's saying, let me read this. It's a previous requirement of two week waiting period no longer required in California, only requires a 48 hour waiting period between the first and second request, after which time the legal prescription can be written. Just acknowledging for anyone from California, he's a provider who is allowed to prescribe. So I'm just trying to get to this question. Per his institutional direction, he would appreciate knowledge about who in the Central Valley of California are readily available to receive referrals. Okay, I think this was more just please, if he has any recommendations for providers. Yeah, so I just want to say that- Dr. Howard, are you able to hear me okay? Yes, we can hear you, Dr. Howard. Ultimately, because I do work in both hospice and palliative medicine, my hope was to be able to connect people that are eligible. I do have one colleague in the Central Valley who there for a period of time was readily available, but because I think there has been more interest, there are times when he's not able to see the patients and write prescriptions and things. So I really just like to make sure that I don't accidentally leave patients on, like, I don't know, feeling abandoned because they're not actually able to exercise the rights under the law when they are eligible and time is limited. Thank you. So I think also what we need to mention is that AADM has something called a patient-to-physician portal. So if you have a patient for whatever state and they have a question about finding a clinician, you don't know one, you don't want to recommend, send them to that resource. They can put in their information and then someone at AADM will kind of behind the scenes match them up with a doctor. Okay, so it's called a patient-to-physician portal and it's a really hugely important service. And I believe that's the only place around the country. Compassion and Choice does not offer that. This is only AADM that offers that service. AADM is A-C-A-MADE, they're changing their name. Is that accurate? It was A-C-A-MADE, but I think as of like tomorrow, it's switching to AADM.org. Thank you. Okay, we have a question from Dr. Steinberg. He's wondering how docs who work with hospices are navigating the need to separate hospice work from maid consulting or prescribing for patients on service with their hospice. You know, it's very hospice specific, I think. I know just a few hospices that will permit their hospice doctors to actually be either a doctor or a patient. I know a few hospices that will permit their hospice doctors to actually be either prescriber or consulting doctor, but many of them sort of want to outsource it, which is why I have a practice the way that I do, which is independent of that. But I do think that lots of hospices need to just know so they can answer patients' questions about what is aid in dying and how does it work to be able to give basic information. So I give many, many talks, my partners and I, to as many hospices, at least in New Jersey, as we can, because we're constantly trying to educate people about what is the process and who's eligible and common questions that people ask, like, my mother has dementia. Well, no, you're not eligible. What if she wrote an advanced directive when she was well? No, that doesn't count either, right? So there's a lot of questions that hospice people could answer. And again, I want them to give out accurate information or refer people to a source that will have accurate information, like aadm.org. There's one in here about compensation. So she's just knowing that a lot of me, physicians are volunteers. She's curious if your group is compensated, and if so, does Medicare and Medicaid reimburse or is it self-pay? Right, it's self-pay. So most of the laws do say that federal insurance programs will not cover aid in dying. And that's one of the worries that a lot of hospices have. Well, we can't talk about it because we're being reimbursed by Medicare. And there's some complex formulas whereby hospices can sort of carve out time and not charge Medicare for having a discussion about aid in dying. There are many different models across the country. Some are volunteer physicians. My particular model is kind of a concierge practice because I am also, I often become either the hospice doctor or hospice consultant doctor. I work with the patients along the qualification. And then, as I mentioned to you, I or one of my partners attend every single death. So it's a specialty. Do we have a sliding scale now? Yes, we kind of do have a sliding scale. There's a lot of people that we help out, but ultimately it's a specialty and this is what I do. And I have to be paid for it. Thanks, Dr. Plummer. And Dr. Helphorn, I see your hand is up. There's a very important question in the chat from Jessica Kahn about what is our obligation in made legal states when we meet a patient to say that this is one of their options? And this is a very controversial topic. I happen to think that we must mention it, but I'm curious the range of opinions about this and how people have operationalized this or if they've run in, if their organizations have a stand on whether we're obligated to describe the options or we're allowed to. Very hard question to answer. It's interesting because I think California now requires that hospices have on their webpage whether they support aid in dying or not. And I believe they're the only state that does have that. I mean, I'm with you. I think it should be offered as an option, but look, just like anything else in medicine, you have to base it on the conversation you're having with the patient. There are certainly people who might be eligible that a nurse, a social worker, or a doctor is having with the patient and they're surely not gonna be someone who's gonna be open to aid in dying and you don't wanna present something that you think is gonna be very negative toward them, but there's others that are hinting around and looking for options. So you have to use your clinical judgment. I think Jess wants to speak. Hi, Jess. Hi, Robin. Thanks. This is Jess Kahn. I'm with End of Life Washington. I'm the medical director there. And I just wanted to mention here in Washington, we actually amended our law in 2023 and required the hospices submit to the Department of Health publicly available forms that give very detailed information about what made services they will or will not provide within the context of their hospice. And we are now coming out in the next coming weeks, very soon, a map, which will be available on the End of Life Washington website in which people can go and see which hospices offer what in which regions of the state. And so they can make an informed decision about which hospice they wanna enroll with if they're interested in aid in dying. I just wanted to mention that so people are aware of that resource and how important that stipulation in the law is in order for people to have, empower people with the ability to make informed decisions about that sort of thing if hospices are participating like they are here in Washington. I think that's great. And I'll just mention that in Washington state, sorry, in Washington state, we have 22 hospices that offer some level of made services, whether that's being attending, consulting, rectal catheters, et cetera, et cetera. So it's a pretty high uptake out here. Hospices becoming, I mean, a pretty competitive business. And frankly, there's gonna be some loss of market share to hospices that absolutely don't participate. I have had a couple of hospices that have been pretty hostile to certain patients. And the hospices, sometimes the patient leaves that hospice and they certainly don't get referrals after that, at least as far as I can tell, they wouldn't because people are looking for this. Another reimbursement question, and this could be for any of the panelists wondering, Dr. Steinberg is asking about the ethics equity issues of physicians who charge five to $10,000 to assist patients with MADE. Wait, say that again, they charge $10,000? Five to 10 grand, yes. And I think Dr. Steinberg is still on if he wants to elaborate on that. I know pretty much just like it says, there are people in my area that to walk in the door, charge $5,000 just for an initial consult. And I just find it a little, I don't know, marginal. I mean, here's the thing, for me, I do a complete initial consult, like an intake and first request, and I don't charge anybody anything because I don't ever want people to feel like they are being coerced in any way or that they have to sign up with me. I think that it's very worthwhile for me to just do that as a service and then they can decide. And as I said, everybody I know who charges does work on a sliding scale. So I wouldn't be able to offer this as just a volunteer though. I mean, I wouldn't be able to offer this practice. Now you have concierge services for many, GPs and internal medicine and all that kind of stuff. If people do want to go to Switzerland, it's about 15,000, I believe. Any other questions? Oh, yes. So another, yeah, another question that's come up is how do you help a candidate who wants to pursue MADE but lives in a non-MADE state? How do you guys approach that? Ah, very good question. So first of all, I, in New Jersey, I don't get a lot of medical tourism. It's really only been a handful of very motivated patients. And in my case, it's the border states. So I see some patients from New York, Pennsylvania, Delaware. It's not that it's that hard to get residency in New Jersey. It's actually not. You can get New Jersey voter registration if you have an address. And then, as mentioned earlier in the presentation, you do have to be in the state to go through the qualification procedure, and particularly when you take the medicine. So what it comes down to is it depends how sick someone is, right? For someone who's really sick to have to pluck them out of their own, you know, their own home and their home bed, go to another location, that's pretty tricky for ALS patients, for example, really hard to get them to another location. So it's hard, physically hard to get there, sometimes physically hard to actually find a place to be in New Jersey, because we don't recommend anybody using a hotel or a motel. That's like really not a good thing. So they either need to have a friend or a family member that will let them use, you know, their home. They can't do it in a public place. They can't take their medicine on a beach bench or anything. That's not good. So there's a lot of just technical issues for people coming from out of state that make it harder. So it's not impossible, but the person has to be very motivated and they have to have a lot of support from their family and their friends in order to make it work. I would echo that. We, in Massachusetts, we have a lot of people who ask about Vermont, and the more you learn about Vermont, there's seven physicians in the state willing to see out-of-staters. They're very hard to find. And the tragedy is that patients ask, almost every case, much too late. They're not healthy enough for the amount of travel and time they need to spend there, or they can't afford it. They have, you know, we've had it happen in bed and breakfasts or Airbnbs. You have to have a ride, people able to help you there. Often you transfer from a Massachusetts hospice to a Vermont hospice who will help you. Almost all Vermont doctors require hospice enrollment and the doctors there during the ingestion. So there's very few Vermonters who complete and even fewer out-of-staters. So the idea is very attractive, but the actual completion is narrow. I think the option of low residency burdens, like we heard about Washington, it's probably easier in the end, but it's still quite a move from your home. It's hard, it's hard. Jess, you have something to say? Hey, I just wanted to point out, I did pop into the chat as well. In the first journal of Aiden Dye Medicine, there was an article that directly kind of addresses the issue of people going from a non-made legal state to a state to pursue made. And it kind of lays out all of the issues that are needed, including legal issues, issues with witnessing, you know, the forms and how it will affect wills and things like that. So I would encourage anyone who is interested to check that out. And I do, I live in Oregon and I practice in both Oregon and Washington. So I do see a fair number of people coming from other states to pursue made. And I will just say, it does a huge barrier, the travel, you know, the need to travel, the amount of money it takes is a huge barrier for most people. They have to complete all of the processes here in Oregon when they come to Oregon to do it. But for anybody interested, End of Life Choices Oregon, you know, will kind of help people if they're considering. The difficult thing is we're not allowed to give direct medical advice to people across state lines due to our restrictions with our licensing. And so we kind of have to give very general advice to patients about, you know, patients who do this need to have very clear documentation of their six months prognosis and their terminal O's and all of that. So it is extremely hard for most people to do it. And it sucks to have to travel outside your home to die. That's always just a really sad thing. Yeah, I agree. It's hard. And that's why I've not had very many, as I said, I've had like a handful of people who have done it and they're very motivated. So it's hard. Yeah. Okay, any more questions? Well, I'm heartened to see so many people here and that there's a lot of interest. That part's great. And again, Gina, if you ever want me to come back and just do an actual thing on like, what is the, you know, how do you go through the process? I'd be happy to do more of that, but that would probably take a whole session to do. Thanks, Dr. Plummer. Does anyone have any other questions or anything they want to ask the panelists? Well, thank you all so much for being here today. Thank you, Dr. Helpern, Dr. Wenzel and Dr. Plummer for being part of this important conversation. And just making sure I see stuff coming through the chat. It's all the same. It was a great presentation. So thank you all for sharing your knowledge with us. Really appreciate it. And then we'll send out an email with resources guide and the recording. So just keep a lookout for that. Thank you all for attending. Have a good day. Bye. Thanks for having us.
Video Summary
The webinar hosted by Gina Parisi, Executive Director of HMDCB, featured a comprehensive discussion on medical aid in dying (MAID). Gina provided updates on upcoming HMDCB events, including a coffee chat and webinars. The session featured three expert speakers: Dr. John Helphorn, Dr. Robin Plummer, and Dr. David Wenzel, who discussed their experiences and views on MAID.<br /><br />Dr. Helphorn detailed the legal, ethical, and practical dimensions of MAID, highlighting challenges when patients seek guidance in non-MAID states. He emphasized that healthcare providers should understand what they can legally communicate to patients about MAID and suggested institutions provide guidance or at least an opt-out option for providers uncomfortable with the practice.<br /><br />Dr. Plummer, who actively participates in MAID, shared insights from her practice. She emphasized the importance of respecting patients' autonomy and the unique nature of MAID compared to suicide, as it applies only to those with terminal illnesses. She stressed the importance of having medically trained personnel present during MAID to guide families through the process and advocated for hospices to at least provide information about MAID to those interested.<br /><br />Discussion also covered the need for better access and fewer barriers for patients seeking MAID, with special concern for those in non-MAID states contemplating moving to avail themselves of the option. Panelists discussed ethical concerns, the need for impartiality, and provided resources like the American Clinicians Academy for Medical Aid in Dying (AADM) for both professionals and patients exploring MAID.
Keywords
Medical Aid in Dying
Gina Parisi
HMDCB
webinar
Dr. John Helphorn
Dr. Robin Plummer
Dr. David Wenzel
ethical concerns
patient autonomy
hospice information
non-MAID states
AADM resources
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