Good afternoon. Do you swear, affirm that the testimony you're about to give is true?

Transcription

1 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 1 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, [Transcription begins at 2:03:30] Good afternoon. Male: Good afternoon. Do you swear, affirm that the testimony you're about to give is true? I do. Male: Thank you. [2:04:00] Good afternoon. My name is. I'm the of the Medical Society of the State of New York. I'm an internist who specializes in geriatric medicine and palliative care. One of my other professional hats is that of Medical Director for Orleans Hospice. In my experience, there are great disparities in access to and the quality of care at the end of life. It is an extremely complex issue with large variations in the wishes of patients, as you've heard this morning, and the application of care when patients approach the end of their natural lifespan or are faced with a terminal illness. First and foremost, I believe that we need to create an environment that eliminates the desire for a patient to contemplate ending their life due to fear of inadequate care at the end of life. As the recently-elected president of MSNY, I have asked a number of our committees to examine how MSNY can help to improve the care of our patients at the end of their lives. Assembly Bill 2383A would permit a terminally ill patient to request medication from physicians to be self-administered for the Page 1 of 12

2 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 2 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, purpose of hastening the patient's death. Until such time as the law changes, aid in dying or assisted suicide by a physician is still illegal in New York State. [2:05:00] The New York Court of Appeals, September 7, 2017, Myers v. Schniederman decision reaffirmed this. In 2017, the MSNY House of Delegates passed a resolution calling upon the Medical Society to conduct a membership survey to determine our members' attitudes on death and dying. This resolution also called upon the Medical Society's Bioethics Committee to develop the survey instrument. The MSNY Bioethics Committee, under the tutelage of its Chair, Dr. Jeffrey Berger, Chief of the Division of Palliative Medicine and Director of Clinical Ethics at NYU Winthrop Hospital, began work immediately following that. The committee members took great care in the development of the survey questions to ensure that there would not be bias in the results. The survey questions resolved around individual physician experience with death and dying and patient requests for assistance. The questions also included whether physicians would prescribe a lethal dose if it were legal to do so under New York State Law; [2:06:00] whether or not the activity was within or without the appropriate scope of physicians' medical practice; whether the activity, if legally permitted, would have any effect on trust of physicians, particularly within racial ethnic minorities and the disabled community. This work was recently completed, and on March 5, the survey was sent by to MSNY members. The survey period closed on Monday, March 19, Most physicians who responded to the survey did not support a prescription for a lethal dose of medication for a terminally ill patient. A large majority indicated that such a measure could have a negative impact on healthcare among racial and ethnic minorities and physically disabled patients. Equally troubling were physician concerns that such a measure would have a significant negative impact on trust between physicians and patients. Our Bioethics Committee's currently analyzing the data related to the survey with an anticipated report to the MSNY Council in the near future. Page 2 of 12

3 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 3 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, [2:07:00] Our surveys are helpful in giving our leaders a general sense of the perspective of our membership with regard how to best approach an issue. This is a very complicated and controversial issue within our membership, and you've heard some of our members testify already on both sides of the issue. There are passionate physicians on both sides who make well-reasoned arguments. MSNY's longstanding position against aid in dying is based upon the sacred principle that physicians are dedicated to healing and preserving life, not ending it. Based on the very preliminary survey results, MSNY does not anticipate changing its position on this matter anytime soon. In 2015, MSNY's Bioethics Committee recognized there was a need to update its policy on the issue and brought a resolution to the MSNY House of Delegates asking for a revision of the statement regarding physician-assisted suicide as a means of trying to balance the evolving views of the MSNY membership. Members of that House of Delegates agreed with revision to the statement but definitively wanted the statement "physicians should not perform euthanasia or participate in assisted suicide" included in the policy. [2:08:00] The policy in whole reads, "Patients with terminal illness uncommonly approach their physicians for assistance in dying, including assisted suicide and euthanasia. Their motivations are most often concerns of loss of autonomy, concerns of loss of dignity, and physical symptoms which are refractory and distressing. Despite shits in favor of physician-assisted suicide as evidenced by its legality in an increasing number of states, physician-assisted suicide and euthanasia have not been part of the normative practice of modern medicine. Compelling arguments have not been made for medicine to change its footing and to incorporate the act of shortening life into the norms of medical practice. Although relief of suffering has always been a fundamental duty in medical practice, relief of suffering through shortening of life has not. Moreover, the social and societal implications of such a fundamental change cannot be fully contemplated. MSNY supports all appropriate [2:09:00] efforts to promote patient autonomy, promote patient dignity and Page 3 of 12

4 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 4 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, to relieve suffering associated with severe and advanced diseases. Physicians should not perform euthanasia or participate in assisted suicide." MSNY will continue to examine the issue through our Bioethics Committee and our MSNY Council. MSNY is committed to work with physicians and groups on both sides of this difficult question to continue to improve the access to and quality of palliative care for all of our patients, particularly in their last days. I would like to share some personal experiences regarding the difficult circumstances to which this legislation could apply that I hope will provide additional nuanced information that will assist you in your deliberations. I've practiced geriatric medicine and palliative care for 25 years and agree that this is one of the most challenging questions for me personally and for us as a profession. I believe I am able to understand both sides of the issue and have had to deal directly with the question on a regular basis. [2:10:00] In my practice, I have been able to have discussion with my patients and adjust their treatment to relieve their fears and suffering. Most physicians are deeply troubled by the potential abandonment of a patient by their physician at their time of greatest need of their physician's skill and caring. Although the proposed legislation requires two physicians to certify a patient, prognostication, as you've heard in some earlier testimony, particularly with regards to time left before death, is one of our most difficult assessments. There's also a subset of patients admitted to hospice or who are otherwise felt to have a limited life expectancy who are misdiagnosed or have substantially less aggressive disease after optimizing their treatment. I have had patients under my care in hospice who legitimately could be certified as having a life expectancy of less than six months who've lived up to three years. In the last year, I've had a new experience which I believe is related to societal change and attitudes toward the burden of life, not just on patients, but on the family that have to contribute to their care. [2:11:00] I admitted a patient to a nursing home with moderate dementia, a probable lung cancer and advanced lung disease. I did not have a preexisting relationship with the patient or the family. After about Page 4 of 12

5 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 5 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, a week at the nursing facility, the family requested hospice services, which were appropriate based on the patient's overall condition. I continued to treat the patient within hospice and optimized her medical regimen, and she stabilized. A few months passed, and one afternoon I received a somewhat angry call from a family member in Texas who wanted to know why I was keeping his mother alive. I explained that we were treating her with usual medical care and that treating her lung disease improved her comfort. That seemed to satisfy that child, but over the next month or so, I had multiple contentious meetings with the family, who basically wanted me to euthanize their mother. The patient was able to participate in decision-making initially, indicated she was comfortable and not in distress. As her dementia progressed, she was less able to make her needs known. [2:12:00] I was left then to deal with her family member who had been designated as her healthcare proxy. With great difficulty, we were able to negotiate her care until she passed. The experience was extremely traumatic for my nursing staff and other caregivers who felt they were being coerced to overmedicate the lovely woman they had come to know over six months. I'm still troubled by this case, and I've had another similar experience in the last year. And I'm sure similar scenarios occur countless times every day across New York in hospitals, nursing homes and hospice. Thank you again for the opportunity to speak with you. I'm happy to answer questions. Richard Gottfried: Thank you. I just have, I think just one question. Has the Medical Society considered current New York law and practice on palliative sedation, and is it considering recommending any change in the law on palliative sedation? [2:13:00] I'm not aware that it has been recently reconsidered. Part of that is looked at routinely, and I'm happy to have that re-looked at by our Bioethics Committee. We're in the process of reviewing the entire situation. I mean, right now, in an attempt to treat somebody who Page 5 of 12

6 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 6 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, has intractable symptoms, we may end up using combinations of medications that will slightly hasten someone's death in attempt to make them comfortable when their prognosis is as bad as it is. So that's standard medical practice. Richard Gottfried: Yeah. I'm certainly not urging you to support restricting palliative sedation. I guess my point is to analogize the two topics, that if you are [2:14:00] [2:15:00] giving someone strong sedation knowing full well that it will shorten their life, maybe by a lot, not just a little, that I think I don't think anyone who has testified here today has opposed. So I mean, it sounds to me like the issue is the length of time it takes the patient to die from the medication, which doesn't strike me as something that New York law ought to be speaking about. Again, I think I treat individual patients, and my patients who are able to give consent, we have a robust discussion about various treatment options, and during that time, if we have a treatment that has risks and benefits so the benefit is more comfort, better quality of life versus shortened lifespan, we have that discussion. Usually those are in patients who it's fairly clear that their life expectancy is much less than hopefully yours or mine. So usually that would fall into that six-month standard that seems to have evolved. But there are probably some patients who would be longer than that, and I think that's an ongoing discussion. Not really prepared to comment more on that. We would be happy to think about it and get back to you. Raymond Walter: Thank you, Doctor. You know, I think that sometimes, certainly in this discussion, we're conflating almost two different things here true end-of-life care, palliative care, and medically dying [2:16:00] Page 6 of 12

7 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 7 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, when their diagnosis is months out. And to someone who apparently, to the untrained eye, is physically fine, able and can continue with that life for a certain period of time without any sort of restrictions, is there a technical distinction, a medical distinction that we can draw between true end-of-life palliative situation and what we're really talking about in this legislation, in medical aid in dying or physician-assisted suicide? Can you ask it again so I get it right, because I want to answer what you're asking. Raymond Walter: Sure. So I'm an attorney. I'm an elder law attorney. In eleven years of practicing in that field, I have never done a living will where someone has said I want to be kept alive as long as possible, on feeding tubes and breathing tubes and whatever. Every single person that I've ever dealt with has said [2:17:00] [2:18:00] when it gets to that point and there's no point of reasonable recovery I forget what the exact term is that I use in my form, but you know, to withdraw feeding tubes and hydration, and there's a real actual end-of-life care at that point, just make the person comfortable. As compared to a situation where we heard the testimony from Kristin Hansin where JJ was diagnosed with six months, four months to live because of the glioblastoma, yet he then lived another three-plus years. Right, and I will make a comment on that. So I think there is a difference between, you know, with decline of treatment, which everybody has a right to, versus actively trying to hasten somebody's demise. And again, one of the big concerns, I think, from our membership was the concern that, you know, we're pretty good at what we do, but prognostication is probably one of Page 7 of 12

8 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 8 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, the worst things, and certainly my personal experience is that, again, I've had patients in hospice who came in with supposedly a hospice diagnosis who didn't have a hospice diagnosis, were discharged. And I've had other patients who came in appropriately who live longer than they were expected. And I think that is one of the concerns of our membership is our inadequate knowledge in terms of one patient about what's going to happen. Did that help answer your question? Raymond Walter: So there's really I mean, it would be difficult, then, to draw a distinction between true end-of-life palliative care and someone who has a terminal diagnosis yet isn't at the end of life, so to speak. [2:19:00] Again, if you depends what you call a terminal diagnosis. So life is a terminal diagnosis. We're all going to die at some point. We just know more about some patients than others, and we can prognosticate, but again, we're fairly imprecise there. Now, we're not bad at it, but there's a fair amount of variation, and I think that's some of the concern of our members in terms of hastening someone's death who, as we heard from the testimony about the young woman whose husband died from glioblastoma, had additional time that was worthwhile to him and his family. Raymond Walter: Amy Paulin: Okay. Thank you. Yes. Hello, welcome. Thank you for testifying. You're welcome. Amy Paulin: When you say your members, are you referring to the fillers-out of the survey? Page 8 of 12

9 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 9 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, [2:20:00] I'm referring to the policy that was adopted by our House of Delegates in The survey is being analyzed. There's some data there, but incomplete. It does not look like it changes much of what we did in 2015 when we last updated the policy. Amy Paulin: And my understanding is that, in order to complete the survey, it was done by Survey Monkey, which was an online survey and could easily be forwarded to non-physicians. In fact, we know it was. Is there is that common when MSNY makes a decision to evaluate a position based on the general public and a survey that might not even reach in a fair way the general public, so you're not getting the view of the general public, you're getting those who happen to send it out? [2:21:00] So this was not to the general public. It was sent to our members. We are aware that there were other people who had the survey, and that's part of why I'm not able to report more to you. The statements that I made on the recent survey are probably the most valid statements that we'll get out of that survey, but we continue to analyze it. So, again, it has not caused us to change our policy, and what was there seems to reaffirm most of that policy. Amy Paulin: So there's no possibility of actually trying to get an assessment of what the members think because the surveys was hijacked, it's not useful. Is that a fair statement? Page 9 of 12

10 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 10 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, No. We did survey our members. We're going to continue to work through that and decide whether we need to take any other action. Amy Paulin: Okay, thank you so much. You're welcome. Kevin Byrne: Thank you. Just wanted to first talk about a little bit beyond I know this is a hearing about this particular legislation, but I know we've all been listening to this testimony, particularly from Miss Hansen and Dr. White, and since we're speaking about the Medical Society, I think one resolution was brought up, I think by Dr. White [2:22:00] about a quality end of life care resolution that was passed last month. I know you may not be prepared to speak about that, but I've also heard a couple times now that we are rated 48th out of 50 in the nation for hospice utilization. As a personal note, I happen to be an EMT and I've taken patients to and from hospice facilities on a regular basis, and do you have any recommendations on how the state can improve that? I do, and I think these should be mostly personal observations based on my knowledge in terms of geriatric practice and a hospice director. Certainly one of the themes in my year as president is to work on elder care issues, being a geriatrician. So I've tasked a number of our committees, our Long-Term Care Committee, our Bioethics Committee to look to see what else we could do to improve the care of elders particularly, but not exclusively to elders throughout the state. Page 10 of 12

11 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 11 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, The hospice part has been a continual issue, and some of that is patient-driven. Some patients [2:23:00] you know, we live in a society that still does not have, I would say, as great an acceptance of death as part of life as perhaps other societies. So I think a lot of our society wants to be treated aggressively, even when the chance that that's going to help is somewhat limited. So I think that's part of it. One of the recent things that I think is an issue, and again, this may be isolated where I practice, but we've had the acquisition of a number of home care agencies in my area that are now owned by insurers, and one of the phenomenons that I've seen is home care will be provided within a CHHA, a certified home health agency, in an attempt to keep patients at home, but there's probably not as much of a palliative care component in addressing of their longterm existential needs until they really can't do anything for them, and we get a referral like in the last week [2:24:00] for somebody to come into hospice then. And I think there is some concern about an industrial medical complex, if you will, that allocates money and perhaps not in the right way for some of these issues. And that's, I think, outside of the area of what you're discussing today, but I think something else that needs to be looked at. Kevin Byrne: Thank you, Doctor. And again, thank you for your testimony here today and communicating with your members so we can get the most up-to-date position from the Society. Thank you very much. Richard Gottfried: This, I guess, is as good a moment as any for me to say what I say at almost every event, which is actually I have a bill that would solve that problem that we should talk about. Page 11 of 12

12 nystateassembly_ d-725e-4384-b6e6-d398f36ec3ca Page 12 of 12 Richard Gottfried, Raymond Walter, Amy Paulin, Kevin Byrne, And I'm happy to talk with you some more about it. Richard Gottfried: Yeah. And we have been joined by Assembly Member Wallace. Unless there are other questions, thank you very much. [Transcription ends at 2:25:00] [End of Audio] Thank you very much for the opportunity to speak. Page 12 of 12