Shownotes
"And people kept saying to her, well, why don't we have something like that in Ohio? Why don't we have something like that in Ohio? And so she never intended to start a nonprofit organization, but she got enough feedback that people really wanted to have the option to at least start working on it." Molly McMahon Graziano - Director of Outreach for Ohio End of Life Options
We’re talking about the sensitive and essential topic of end-of-life options, an area many of us encounter as caregivers for family members, yet one that often leaves us searching for guidance and support.
We sit down with two expert guests: Molly McMahon Graziano, Director of Outreach for Ohio End of Life Options, and Kathleen Carmody, owner of Senior Matters Home Health Care and Consulting, a certified death Doula and dementia practitioner.
We explore the resources available for those facing terminal illness, clarify the distinctions between hospice and the evolving role of the death doula, and shed light on important legal and practical considerations.
The episode also touches on the deeply personal nature of dying. And how, with the right knowledge and support, families can honor their loved ones’ wishes while navigating the challenging end-of-life journey.
Whether you’re currently supporting someone at the end of life, considering how to start these tough conversations, or simply want to better understand the options available, this conversation offers practical insights, heartfelt stories, and a wealth of resources to help you plan with compassion and confidence.
3 Key Takeaways
Death Doulas Offer Practical & Emotional Support: Unlike hospice, death doulas can provide around-the-clock, highly personalized care for both the patient and family, addressing everything from hands-on support to legacy planning and navigating the complex emotional landscape that comes with losing a loved one.
Empowered Choices Begin with Conversation: States differ widely in what end-of-life options are available, but the most important tool is open dialogue. Family discussions, advance directives, and clear communication about wishes ensure loved ones’ preferences are heard and respected.
Proactive Planning Makes the Hardest Times Easier: Start planning before a crisis. Resources like palliative care consults, practical tools (hello, Next of Kin boxes!), and organizations like Ohio End of Life Options and national groups (e.g., Compassion & Choices) are key to navigating care, easing burdens, and ensuring dignity for everyone involved.
If you like this episode, please let us know. We appreciate the feed back, and your support of offset costs of producing the podcast!
Moments
00:00 "Founding Senior Matters Home Care"
06:51 "Dying with Dignity at Home"
07:33 Ohio End of Life Options Founded
11:13 Home Care's Role in End-of-Life
16:10 Support for Caregivers and Doulas
18:24 Prepared for Parental Loss
24:00 Advocating for Transparent Medical Information
28:33 "Encouraging Palliative Care Consultations"
32:28 "Clarifying U.S. Medical Aid Laws"
37:06 "Hospice Enrollment and Aid in Dying"
39:57 "Start Conversations on End-of-Life"
42:04 Planning Elder Care Options
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Recorded in Studio C at 511 Studios. A production of Circle 270 Media® Podcast Consultants.
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Copyright 2026 Carol Ventresca and Brett Johnson
The views and opinions expressed by the experts interviewed on this podcast are their own and do not necessarily reflect the views of the podcast hosts or any affiliated organizations. The information provided in these interviews is for general informational purposes only and should not be considered as professional advice. Listeners are encouraged to consult with qualified professionals for specific advice or information related to their individual circumstances. The podcast host and producers do not endorse or guarantee the accuracy, completeness, or reliability of any information provided by the experts interviewed. Listener discretion is advised.
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Listener Disclaimer
The views and opinions expressed by the experts interviewed on this podcast are their own and do not necessarily reflect the views of the podcast hosts or any affiliated organizations. The information provided in these interviews is for general informational purposes only and should not be considered as professional advice. Listeners are encouraged to consult with qualified professionals for specific advice or information related to their individual circumstances. The podcast host and producers do not endorse or guarantee the accuracy, completeness, or reliability of any information provided by the experts interviewed. Listener discretion is advised.
Transcripts
We are looking forward our way. Hi, this is Brett. Many of us has taken on the role of caregiver for parents or other family members. Today we're going to focus on the care issues for terminally ill patients and what resources do exist. Today's guest Experts are Molly McMahon Gaziano, director of outreach for Ohio End of Life Options, and Kathleen Carmody, owner of Senior Matters who Home Health Care and Consulting, a certified death doula and certified dementia practitioner. Welcome to both of you.
Kathleen Carmody [:Thank you. Thanks for having us.
Carol Ventresca [:Thank you so much for being with us today. Kathleen, that title of yours gets longer every time I see you.
Kathleen Carmody [:You got a lifelong learner.
Carol Ventresca [:Exactly. You know, that's. Oh, good. So am I. So thank you again, both of you for being with us today. But before we actually plunge into this topic, we wanna hear more about you. Now, Kathleen, you've been with us on, on a podcast in the past. We had a great time when you were with us before.
Carol Ventresca [:Let's remind our audience about your journey, your career path, how you got to the point of owning your own healthcare organization. And now all this additional training you've been taking. And then when you're done, we'll have Molly give us her background and what brought her to Ohio. End of life options.
Kathleen Carmody [:Wonderful. Yeah. Again, thanks for having us. I've worked with the elderly for all of my career. Started very early with Parks and Recreation in Columbus and then got into work in nursing homes from marketing, admin, sales activities director, things like that. And then kind of branched out from there into home healthcare. And I was doing sales for home healthcare and, and I realized kind of in the middle of that journey that a lot of times when I would have met a client, a potential client, and I would bring that information back to our office, I would hear from the company owner or corporate that that job, you know, wasn't big enough. It was.
Kathleen Carmody [:The hours weren't enough.
Carol Ventresca [:The client needs.
Kathleen Carmody [:The client needs weren't enough. And in home healthcare, a 247 client is what we all want. That's how it works. But over the years, the average of what people need is really two to four hours per day to help them stay in their home. So I was hearing a lot of no's. We can't help that person or we're choosing not to take on that client. And. And it was kind of heartbreaking for me because there were some cases where people really did need help, but these companies weren't going to do it.
Kathleen Carmody [:So I actually striked out on my own and started Senior Matters home health care. I had had years of experience in the field and not a business background, which kind of could have been a positive or a negative. But I, you know, sounds kind of cheesy, but I worked from my heart. And then that led to building a great team of caregivers that really do care and we could do things that other companies weren't doing and help keep people at home. And then since then, I have been certified as an end of life doula. And that is another journey that kind of ties in very closely with home health care. We're in the homes with these clients and if we're doing a really good job, we're with them till the very end of their life. So we develop that relationship with them and it almost comes naturally.
Kathleen Carmody [:A lot of times a doula is in that home holding the hand of that person until they take their last breath. So a doula does. Brings a whole new arena to home health care space and in conjunction with hospice.
Carol Ventresca [:Well, and when you were with us before, our specific topic was looking at home healthcare in the middle of the pandemic.
Kathleen Carmody [:Yes.
Carol Ventresca [:And all of the crazy things that you had to do to pull it together so that the providers could still go and visit the patients and take care of people. Or else these folks were home alone and trying to take care of themselves, which for many is nearly impossible. I've been there, done that. Actually had 24, seven caregivers. And it was quite an interesting adventure.
Kathleen Carmody [:Absolutely.
Carol Ventresca [:But we survived it. So, yeah, kudos to your team. They've done a great job. And thank you. Thank you.
Kathleen Carmody [:They're very dedicated.
Carol Ventresca [:Yeah. We've heard lots of good things about them. So thank you. So the training that you've done on the death doula, how is that. And you're also a certified dementia practitioner, how is that the same or different?
Kathleen Carmody [:It does overlap, obviously, with our demographic of elderly. A lot of our clients do have dementia and they can be terminal and that can be. That has a whole host of issues with it, especially as we get towards end of life. If someone has advanced Alzheimer's, they can't tell you where they hurt or how they hurt. We have to learn how to anticipate that. So for me, and how we've structured our doula work is that those two really work together. Now, if we're with a younger person that's terminal, that's not necessary.
Molly McMahon Graziano [:But.
Kathleen Carmody [:But they really do come together and complement one another in our demographic of age.
Carol Ventresca [:Great, thank you. Molly, let's hear about you. You're New to this podcast?
Molly McMahon Graziano [:I am new. I'm very, very glad to be here. Thank you for having me. I have spent my entire career in the nonprofit sector. I've worked in hunger insecurity and organ and tissue donation and recovery. But probably the tipping point as far as really having an impact in my end of life work was I was the primary caregiver for both of my parents. In the early 2000s, my dad was diagnosed with pancreatic cancer. At the same time my mom was living with copd.
Molly McMahon Graziano [:There was five siblings, but only one lived close to my parents. So I had to kind of. It was baptism by fire. I had to jump in. I was only in my 30s, so it was pretty isolating, a kind of a lonely experience. And there weren't really nearly the resources that there are today. So I learned a lot. It was an amazing experience.
Molly McMahon Graziano [:It was hard, it was sad. But I'm so grateful that I had that time with them. Their image of how they wanted to die with dignity actually looked that they wanted to die at home. They wanted to have their faith involved in their end of life care, and they wanted to make sure that their pain was controlled. And I feel very proud that we were able to make that happen for them. And so after that, I had the opportunity to meet Lisa Vigil Schattinger, who is our executive director, just by happenstance. And Lisa's story is very compelling. She grew up in Oregon, and when her stepdad was diagnosed with cancer, he opted to use Oregon's death with dignity law.
Molly McMahon Graziano [:He had been. He was a retired neurologist. He had seen a lot of things, obviously working in healthcare all of his life, and decided he knew what he wanted the end of his life to look like. So Lisa, who is a nurse by training, and then her mom, who is also a nurse by training, walked through that experience with him as well as his children. And when she came back to Ohio, she started sharing what that experience was like. Cause obviously it was, you know, it's quite a unique experience to have. And people kept saying to her, well, why don't we have something like that in Ohio? Why don't we have something like that in Ohio? And so she never intended to start a nonprofit organization, but she got enough feedback that people really wanted to have the option to at least start working on it. So she founded Ohio End of Life Options.
Molly McMahon Graziano [:And then she and I have been partnering ever since to just kind of grow this small grassroots organization.
Carol Ventresca [:You know, it happens so often that nonprofits or social service agencies come about because Of a personal experience. Brett's been through caregiving for parents. I took care of my dad after my mom died very suddenly. She had been his caregiver for years. So then suddenly I was. And you had to take off work and, you know, all those kinds of things happening. But that's how I got into senior services, from having been in higher ed for 30 years. So it is amazing how that comes about and how that it's easy to be dedicated when it's something that's really touched your heart.
Molly McMahon Graziano [:Very much so. Very much so. And we find a lot of people that come to our issue have had similar experiences. And same thing with the death doulas. The death doulas are walking beside people at the very end of their life. So we find that death doulas were one of the original groups to say, hey, we're really supportive of what you're doing. We absolutely. Because they're really working so hard every day to try to honor the wishes of their patients.
Molly McMahon Graziano [:And so it was just kind of a natural fit. And we've had the opportunity to visit and, well, not even visit, but necessarily go and attend different conferences in Ohio. And the response has been overwhelmingly positive. Especially people that work in the end of life space recognize that there needs to be as many options as possible, because everybody has a unique way of imaging or kind of getting an idea of what they want their end of their life to look like. And they might not have any control over the disease, but they would like to know what all of their options are as far as end of life goes.
Brett Johnson [:Yeah. Well, Kathleen, I want to go back to what you talked just a minute ago. Can you give us details on this, the new role of the death doula, how it emerged, and how is it different than a hospice team? Because you brought that up just briefly. I think that needs to be unfolded a little bit more because I think we're all familiar with hospice. We know the term, but how are they different or how they differ? Basically?
Molly McMahon Graziano [:Sure.
Kathleen Carmody [:I realized that we were doing end of life work without being doulas. We were with our clients at the last moments. We called the funeral homes. We sat with the grieving spouse. We helped the children walk through all that. So then I had the opportunity to train with Dr. Martha Jo Atkins, who just is a phenomenal teacher. And I wanted to bring Doula Moore to the forefront of what we do because it is a separate issue from home care.
Kathleen Carmody [:But if you're in the home care space, I strongly feel it just goes together. As I said, earlier, if you're with a client till the very end, I mean, five, six, seven years, you're likely going to be with them till the very end. So what could we learn more about end of life? All of the different stages, all of the rituals, all of those things that encompass end of life, from practical matters, wills, estate planning, all of that, to the physical to the emotional. So that kind of took its own space and comes together very nicely for us. Where that differs from hospice is hospice in general. I think the average time someone's on hospice is about two weeks. That may be growing a little more now over the years, but normally it was two weeks. And that's because hospice is still such a frightening word.
Kathleen Carmody [:So we are with the client for the duration. And again, we may have had this relationship for a number of years. Hospice comes in to the. At the very end of. Towards the end of life, obviously, hospice is. You have to have nine months expectancy of life. You can certainly be recertified. We've had a lot of clients graduate from hospice, which is wonderful.
Kathleen Carmody [:So hospice comes in towards the end, manages all the medication and pain management. So that's the main thing that hospice does. Although they do obviously more than that. They provide volunteers, chaplains, all of those other things that hospice does. Hospice is mainly the medical end of it. Where Doula is, is we're there around the clock at those end of day times as things are coming nearer to an end. So we're watching the changes, we're watching the breathing, we're watching the medications, things like that. Hospice cannot be there 24 7.
Kathleen Carmody [:So we fill that void in conjunction.
Brett Johnson [:Okay, good. Nat explained it very well. Good, thank you. I was figuring that was where it was going. But if you've never gone through a hospice situation, you kind of. You only. Okay, I get what hospice is, but I've never experienced that sort of thing.
Carol Ventresca [:Yeah. And I don't think hospice is ever what you think it's going to be either. A lot of folks think hospice is 247 care. They do over a long period of time. And you find out real quickly that's not it. And they literally are just kind of jumping in and out. Yes, that's the experience I had. I probably am the only person in Franklin county who actually complained about hospice.
Carol Ventresca [:It's a long story, but it was a situation. And this kind of goes with my next question to you. You have to meet the family needs. It's not just the individual. Hospice would come in to see my dad during the day and we had an array of caregivers. None of them had all the information on my dad. And so when hospice would come in, it was the nurse, the social worker, the PT or whoever they were sending. They were getting, I don't wanna say false information, but only part of the story.
Carol Ventresca [:And I kept saying, and my dad graduated from hospice. I was so relieved because at that point it was six months and he was doing fine. So they took him off, but then the doctor wanted him to come back. And I'm like, I don't want hospice, because unless they are there when I'm there, it does none of us any good. They have to hear from me or at least call me on the phone. Finally, they had to hire somebody to be a case manager at night to take care of our case. They'd never done that before. So that's my question to you.
Carol Ventresca [:A death doula is not just about the individual. There are all kinds of things happening. Tell us about those relationships, those stages you're going through with the family members. Like you said, wills and funeral homes and all of those kinds of things that if somebody's not had a death in the family, they have no clue.
Kathleen Carmody [:That's a great point. Everything you said was so pertinent. But if you've not had a death in the family in your home, hospital is a completely different story. But in your home, you do not know what to expect. So just one example, we had a client that was just. We were doing home care and then they moved to hospice. So we would do round the clock shifts, and so we upped our schedule. But I made sure that the wife went out for a walk, she went to go visit the grandchildren.
Kathleen Carmody [:We instinctively would take the trash out, throw in a load of laundry. Those practical things that if you are caring for a loved one, don't get done, nor do you care about it that time. But those things for an exhausted spouse to go to bed with, clean sheets, things like that, the very, very practical up to the, can I get you a cup of coffee? While she's sitting there just beside herself, not knowing how long her husband's going to live. And the sadness and the emotion that come with all of that, you know, we do this on a daily basis, but it is your client's very first time losing a loved one in that situation that you're involved with. So that can never be taken for granted. And I think that as a doula, we have that time with the client. We have clients that we work with well ahead of even being on hospice that want to Leave a legacy. They want weekly meetings.
Kathleen Carmody [:They want to plan exactly their rituals. They want to say, I want my bed facing the window here. You know, really very involved. I've seen that change over the years. And I feel that certain personalities are more prone to that kind of planning than, for example, we had a Marine not too long ago, well into his 90s. He, you know, I wouldn't even bring up talking to him about certain things like that because his personality was just extremely different. Some people are very receptive, others don't want that. Doula can be very touchy feely, if you will, but also we're very, very practical.
Kathleen Carmody [:So we cover a lot of ground there with hospice. And we're, you know, we've already have that relationship with the family usually and you know, we very often we still have the relationship with hospice and know who the nurses are coming in.
Carol Ventresca [:Right. I think that my mom and I were prepared because my dad had been sick for so many years. So then when she passed, I, I was a little more prepared and also never heard, never got an answer that I didn't keep asking the question until I got the answer I wanted, basically. But with the care, we were very lucky with a group of caregivers long before doulas probably were thought of who were attuned to family needs and often would just sit down with me and say, okay, we got to prepare for this, we got to prepare for that. So that's really, you know, if people have not had a death in the family, in the house, or long term illness, it is, it's a gauntlet to run. It is just terrible. I mean, it's not easy in the medical community if you're not part of it.
Kathleen Carmody [:Absolutely. I remember when our mom died many years ago, we were alone. We didn't have hospice there. They were gone. So it was just my big Irish family, all of us. But we waited. The priest was with us and the funeral director came in, took my mom from upstairs. And then the priest took us all in the kitchen and just said, you all stay here for right now.
Kathleen Carmody [:And then they took her out. That, you know, again, we keep saying this, but you just, you think you can be prepared, but until you actually go through it, you don't know exactly how you feel, how you're going to react. It's very, very difficult. And to have someone there in the background, I think that's also very important. We're not telling people what to do. We're not directing. We may be directing from the background, but very respectfully Guiding and then getting the family to where they need to be. I remember one client, her husband died.
Kathleen Carmody [:We were with him and we packed her up to go to the son's house. She said, I can't stay here. And I already knew we were going to take her to the son's. So we got some of her things together in a little suitcase for. Got her everything she needed for several days, packed her up, put her in the car and took her over to the sons. So it's not just like you're there for the duration.
Molly McMahon Graziano [:And I love too, that death doulas all have certain specialties. So you really. It's so individual. You might interview three to five death doulas just to find the right match for you, because they do. Everybody brings something different. They're not clinical. I know a couple of death doulas who are trained nurses, but they do not do anything clinical. So they can have that time.
Molly McMahon Graziano [:And hospice nurses that are coming out and doing calls, they're on a time crunch. They have to see all these patients in the day. Your death doula can stay there. They can be that point person. You can find the person that you match with and that matches with your family and what you're looking for in that, too. So I think it's wonderful that we have so many death doulas that have all kinds of different specialists, specialties, and it's really about finding the one that works for the patient.
Carol Ventresca [:Right. Because every case is different, every patient needs are different, family needs are different, and it's.
Kathleen Carmody [:It's the continuity of care as well, right?
Carol Ventresca [:Very much so.
Kathleen Carmody [:Like you said with your dad, is.
Carol Ventresca [:There like a registry for death doulas? I mean, if somebody is listening to this podcast in Timbuktu, Iowa. Yeah, they can.
Kathleen Carmody [:There actually is.
Carol Ventresca [:Okay.
Kathleen Carmody [:There's many different orders organizations, but there is a. I can't remember the name of it right now, but a registry.
Carol Ventresca [:Okay.
Kathleen Carmody [:And then a lot of times within your doula organization, social media, we'll see. Is there a doula available in New York City, I saw last week. Or a doula available here? So it's kind of a. You know, we help one another. You know, it's not like there's companies out there specifically Doulas R Us, for lack of better words. So you're an individual person with those skills. You know, I happen to have the home healthcare company that goes along with it. But a lot of times there may be someone that has social worker background might be a doula.
Kathleen Carmody [:So there are definitely ways to communicate.
Carol Ventresca [:Okay. So audience will have a list of resources with this posting of this podcast. And Kathleen's going to give me all the tips and hints on how to find a death doula in your neighborhood.
Brett Johnson [:Exactly. Yeah. Let's get back to you. Give us an overview of the mission and vision of Ohio. End of life options, you know, tell us about the organization and how you're supporting Ohioans.
Molly McMahon Graziano [:Sure. So we have a 501C3, which is our kind of information and awareness nonprofit. And then we have a 501C4, which is our political fund that allows us to do lobbying and do things at the State House. Right now, our 501C4 is open and available. We're not doing a lot of work at the State House right now because right now we're really focused because we are a small grassroots and really building our coalition of support across the state. You know, we live in a state of 11 million people. And as I always say, when we do finally get down to the statehouse, we want to walk through those doors with thousands, not hundreds of. So we travel all.
Molly McMahon Graziano [:I travel across the state, I do a lot of public speaking, I educate people, I kind of give them my philosophy generally. And I did this a lot with my organ and tissue donation work, was to really make the process as transparent as possible. Let people ask questions that they've always kind of wondered about, but they didn't quite know how to ask it or where to ask it or where to get that answer. Unfortunately, there is a lot of misinformation out there about medical aid and dying. And. And one of my goals is to just say, ask me anything you want or let me give you this information, because I really feel like everyone should have a fully informed consent or fully informed opportunity to know what medical aid and dying is. What it is not too. Because we have the strictest laws in the world.
Molly McMahon Graziano [:The US has the strictest laws in the world. What is the eligibility? What are the criteria and for people? If you live in a state that has medical aid and dying, there are state organizations that can help patients navigate the problem process. And if you live in a state without medical aid and dying, you can travel to some certain states and be able to access medical aid and dying. So we try to make sure that people at least know where to look. And like we were talking about the death doulas in the registry, one of the things that we're doing with our organization is trying to create a directory. So in Ohio at least, you would be able to know by Region who your death doulas are. And we're trying to make, make sure that we integrate that into our website because we are so, so, so supportive of the work that death doulas are doing. Hospice is doing amazing work.
Molly McMahon Graziano [:Again, I've had that familiar experience with that. A lot of times people don't realize they'll call us. We don't, as I said before, we don't do a lot of direct service, but people will call us and ask us questions. And you'd be surprised how many people don't realize that they can be going through chemo, radiation, and being able to access palliative care. At the same time, people think palliative care is only a hospice thing, and it's not. So we try to educate people because we want everyone to have as good a death as possible. And that's going to look different to a bunch of different people. Kathleen and I have spoken about this before, but it's a lot like when you're looking at the birth process.
Molly McMahon Graziano [:You know, some women are like, bring that epidural on my mind as well. Right, Bring that epidural on. Others are like, absolutely, I don't want any medication. And so it's really, it's such a deeply, deeply personal experience. And we want to make sure that people have the tools that they need and that they're hopefully having these kinds of conversations before they are in a crisis situation. The best time to talk about your end of life planning is when you don't need to. Yeah. So we just, we do a lot of work and try to encourage people too, to get their advance directives, how to pick a healthcare proxy or health care power of attorney.
Molly McMahon Graziano [:Because just because they happen to be your oldest child doesn't necessarily mean they're the best person to be your healthcare power of attorney. And what to look for in those people. Because having walked in those shoes and known and seen things and experienced and observed things, you can tell when families have had end of life conversations and then you can tell when it's just there's been zero dialogue and nobody knows what anybody wants. And it's really so, so hard on the families. And it ends up then in turn being hard on the patients because sometimes we're just keeping them on the ventilator longer than they should be on the ventilator. We're not allowing them to have a DNR and things like that. So really the best time to have any kind of end of life conversation is as soon as you turn 18, you should be starting to have end of life conversations.
Carol Ventresca [:Well, and lawyers are doing, I think, a better job when you're updating your will at any age of going through all of that medical power of attorney. And now it is. There's a survey at least I just filled one out a few years ago on do you want this? Do you want that? Do you want to donate organs? Do you? And which ones? To the nth detail. So it seems that the legal community has tried to fill in a little bit of that gap. Yes, but there's still a lot of gaps out there. And it seems like the family members, as you said, it's just not something people want to talk about.
Molly McMahon Graziano [:No.
Carol Ventresca [:If a family calls you and they're waiting, you know, have a terminally ill patient in the home, what are you telling them? How are you getting them to the point of being able to talk about this?
Molly McMahon Graziano [:Well, Lisa being Lisa Vigil Schattinger, our executive director, being a nurse, she usually will field those phone calls for us. The first thing we're going to encourage them to do is to go back and have a conversation with their health care team. If they are in an ICU or in a hospital setting and they're really, really worried about how things are going and they like, maybe there's a few family members who want to have an end of life conversation, but they know they're going to run up against people who are just not ready. We will suggest maybe that they get a palliative care consult because at the end of the day, the palliative care team in the hospital generally has some more time. They have specialized training in how to facilitate goals of care conversations. They're able to deal with the complex family dynamics that you can have in place when you're looking at end of life conversations that often the ICU nurses and the ICU social workers don't always have the time to sit down and do that. So in my personal life, if somebody asks, I will usually say get a palliative care consult. I will either then.
Molly McMahon Graziano [:If not, then I will definitely ask them to see if they can talk with a social worker. Social workers always tend to have that 30,000 foot perspective and be able to kind of know and refer and at least get you the information that you need. But that's usually like if they're calling in a crisis because as I said, we don't consult and we don't provide legal or medical advice. So we always want to encourage them to go back to their team. And oftentimes the phone calls that we get are just that there's one one side of the family that is in this camp, one side of the family that's in the other camp. And I think the folks that, in my experience, even the people that are reluctant to let their loved one go, there's a reason behind that. And palliative care teams and social workers and death doulas can do an excellent job of being able to help flush out those conversations because usually it's based in fear. There might be some complex family dynamics that came from childhood, whatever the case may be.
Molly McMahon Graziano [:And you want the end of life experience to of course, be good for the patient. But when I used to do a lot of training for the doctors, I used to say to them, and Kathleen kind of referred to this earlier, is that they're only going to be told one time that their loved one is brain dead. And you're going to be the person that's going to do it. You are literally going to be part of that person's end of life story for the rest of the family's life. And being able to train and to know how to do that compassionately yet informatively. Palliative care people, just the palliative care teams and hospitals, if you have one, can really just be such a wonderful, wonderful resource.
Carol Ventresca [:And that's the kind of information, though, that you're able to. You or Lisa are able to provide a client in Ohio specifically to a palliative care.
Molly McMahon Graziano [:Usually if they're calling from a hospital setting, we'll say talk to your nurse or your doctor about getting a palliative care consult or just request one.
Carol Ventresca [:Yeah. You had mentioned that there are some states who have legal recourse that it's possible for an individual to make this choice for themselves. Ohio is not one.
Molly McMahon Graziano [:Correct.
Carol Ventresca [:Can you give us a little overview of.
Molly McMahon Graziano [:Sure.
Carol Ventresca [:What's out there?
Molly McMahon Graziano [:Sure, sure. So probably the most popular state that everyone pretty much knows about is Oregon. Oregon was the original they have their death with dignity law. And then let's see if I can remember off the top of my head, let me see if I can. Washington, California, Hawaii, Colorado, New Mexico, Vermont, Maine, Delaware just passed a law this year. New York has passed a law. It has not been signed by the governor yet. So we're thrilled to have two states being able to pass legislation and on average about 20 states per year put forth legislation.
Molly McMahon Graziano [:And sometimes you put forth the legislation. Not that you think it's going to go all the way through the House and the Senate and get signed, but you're starting conversations so our policy team spends time at the statehouse doing a lot of education about what medical aid and dying is, what it's not, what the eligibility criteria is, and really focusing on what the American model looks like. I'd say one of the biggest obstacles that I have to overcome because I do a lot of the public speaking, I do a lot of our social media, so I'm always having conversations online with people. Is everyone lumping together? Canada, the Netherlands, Belgium, and the United States? Our laws are nothing like theirs. But it's very tricky, obviously, especially online, to have a conversation, because you might be having a conversation with people from 10 different countries. So we really want the folks in the United States to understand what our model and what our framework looks like and how. And, you know, and how they can access it. So two states will do not have residency requirements.
Molly McMahon Graziano [:Most of the legislation that's ever been written since the beginning does require you to be a resident of that state. That's shifting a little bit. So what's happened now is Oregon and Vermont both will allow people to come to their state. They have to go through the entire process, the entire eligibility process, the ingestion process, everything in the state. But you can go and access medical aid and dying in those states. Which sounds like, oh, okay, well, I live in Ohio and we don't have a law. I'll just go to Vermont. You know, number one, you're terminally ill.
Molly McMahon Graziano [:You're not going to be physically as well as you know you're going to be able. You're going to feel bad. Logistically, it can be a challenge. You still have to have two separate physicians in that particular state, certify that you are terminally ill and have a life expectancy of less than six months. You have to have multiple requests. There has to be general, generally waiting periods through the request, or you have to have been enrolled in hospice to rate. Waive the wait waiting periods. So it takes.
Molly McMahon Graziano [:They usually recommend. Vermont and Oregon will generally recommend that you're in their state for about 30 days to go through the entire process. So that's not really an option for everyone. And I think one of the things that I just feel unfortunate that our folks don't have access to this is because dying well, in a way that reflects your values and belief shouldn't be dependent on your zip code or.
Carol Ventresca [:And. And your bank account.
Molly McMahon Graziano [:And your bank account. Exactly, exactly. Because the. The U.S. supreme Court determined that medical aid and dying is a state's rights issue. So it's not going to ever be A federal. It's not going to be ever at the federal level. We'll always be passing it state by state, which is fine, because I think every state has kind of their own little personality.
Molly McMahon Graziano [:We're thrilled because we did a survey in 2018 and we found that about 7 in 10 Ohioans support the option, even if it's not one that they would use. Gallup did a survey that showed about 74% of Americans support at least having access to the option. And so when we're talking to most people, once we make them aware that we're kind of working on this, they're like, oh, good, this is. This is what I want. I want this option because either. Either they're living with a terminal illness themselves, they've lost someone that they love to a terminal illness. And even if they did have, like, I would consider my parents to have had a good death as defined by them. And it's really how everybody kind of defines what that end of life experience looks like for them.
Molly McMahon Graziano [:So our hope is to eventually be able to pass legislation in Ohio that will allow this option for. For terminally ill patients.
Carol Ventresca [:In all of the articles and things that I was reading for this podcast, the one thing I was really.
Molly McMahon Graziano [:I.
Carol Ventresca [:Don'T wanna say happy, but really pleased to see was how much information is put into the legislation that protects the individual. This isn't just, oh, you know, my child, who is going to inherit a lot of money, is decided that kind of thing. It's it. People are. Are really taken care of.
Molly McMahon Graziano [:They absolutely are. And we have, you know, a lot of years of collective data to show that the laws do work as intended, the safeguards work as intended. And there's no. There's zero verified cases of abuse or coercion. Because the picture of someone who's considering medical aid and dying is someone who just go ahead and maybe just use myself an example. So say I'm diagnosed with a cancer. Of course I want to live as long and as well as I can. So in doing that, I'm going to get my chemo, my radiation, you know, obviously depending on what kind of cancer I have, I'm going to go through all of that.
Molly McMahon Graziano [:There's a. You know, we are human beings and our instinct is to survive. But if that time comes and, you know, a few years down the line or whenever that time comes, and the doctors say we've exhausted all the treatment options that you have now, I want to get on hospice. I think a really neat thing about states that have aid in dying Is that anecdotally, and we haven't done any official research on this, but anecdotally, they tend to have earlier hospice enrollment in states that have aid in dying, because terminally ill patients might be coming and saying, hey, you know, the doctors have said they can do everything they can do. The other thing I like about the legislation in the US Is that all of that legislation requires the physician to. To give them. To give them information about all of their end of life options. So then they usually go into hospice.
Molly McMahon Graziano [:In Oregon, over 90% of the people that use aid and dying are enrolled in hospice. And I feel fairly comfortable saying in most states it's probably between 70 and 80% of the people that use aid and dying are enrolled in. Are enrolled in hospice. So they live well on hospice and maybe they, maybe they, you know, graduate or whatever the case may be, generally not with our specific population, but then they have that hospice. And then should their suffering become too much as defined by them, then in states with aid in dying, they have the option to have that peaceful, controlled, planned death.
Brett Johnson [:Well, it's good to hear that your organization partners and assists the patients and their families. You gave a great example of walking through and such. Are there other organizations that we should be familiar with?
Molly McMahon Graziano [:Yeah, so there are two national advocacy organizations. There is Compassion and Choices and Death with Dignity National Center. So those are the two national advocacy organizations. There's also now a national clinical organization called the Academy for Aid and Dying Medicine. And they are really doing wonderful work because they are really starting to create the infrastructure for this medical subspecialty of aid and dying medicine. So they're doing a lot of research. There's physicians that are participating in, you know, reporting, you know, different pharmaceutical protocols for patients, depending on what kind of illness they have and how long is it, you know, is it effective, is the patient comfortable, and all of those kinds of things. So those in the United States are the two advocacy organizations, and then the Academy of Aid and Dying Medicine.
Carol Ventresca [:One of the things that we always ask our guests to do is to give us their last words of wisdom. And so I'm going to have Molly start. Just give us an idea of how you would suggest a listener work through this for themselves to think through for themselves or a family member to get on the right path.
Molly McMahon Graziano [:I like to say that I think adults know more what they want at the end of their life than they actually think they do. I think if you really think about how you've lived your life and the things that are important to you and what your priorities are and what your values are. And that's the first thing. I think the thing that keeps people really in the dark is that they don't, they don't think they know, they don't know exactly how all the intricate paperwork works for everything. So it's kind of overwhelming. And then nobody starts anything. So the first thing to do is I will always tell people, if you have family members that you can't get to talk, turn on a movie, a documentary that specifically has an end of life topic and start a conversation. Sometimes it's easier for people to talk about an objective television show than it is for them to talk about what their own needs are, but that's an opportunity for them to start really kind of evaluating.
Molly McMahon Graziano [:There's really wonderful documentaries and great books out there, at least about our specific topic, but also about End of Life. I think Finish Strong is a really great book that Barbara Combs Lee wrote. I've had a few senior groups use those and then bring us in to kind of talk about how that helped them out and help that help them planning. Because a lot of this really is very value based. You're going to tick off the boxes for the paperwork. But the other surprising thing I see is you've got to tell your family. I did a presentation with a senior group and there's probably 35 people in there and bless their hearts, everybody had their paperwork done. And I said, how many of you have sat down with your children and reviewed what's in the paperwork? There's a lot less hands.
Molly McMahon Graziano [:Your children or your caregivers or whoever that is, need to hear it verbally from you. It's, you don't have to talk about it every day, all day, but you do have to have that conversation because when the time comes that they need to honor your wishes, all those things will start to flood back and they'll know what your philosophy, what your end of life philosophy is and be able to meet your needs and give you what you want at the end of your life.
Carol Ventresca [:Wonderful. Thank you. Kathleen. Last words of wisdom.
Kathleen Carmody [:There's just so much involved in it, but I would say that I think it's a great idea for families to look ahead, develop a relationship with. I do a lot of consulting, not just in home care, but that type of thing. So, you know, let's say your parents are getting older and, you know, there might be a diagnosis coming up. Get that ball rolling with how you're going to provide care in the home while they want to stay home. Or if they want to go to a facility, start looking at facilities, know how to find a good facility, look at the Medicare sites and the ratings and all of that, because the closest facility to your home may not be the best. So there's just so much to do that, you know, once the shock of a diagnosis sets in, you really need to get moving on pulling all of those things together, from the practical paperwork to finding out what your loved one wants, and also supporting that loved one, supporting their needs. I always find that it's not the. The client or the patient.
Kathleen Carmody [:They know what they want. They want medical aid and dying. They want this. They want to stop treatment or whatever the case may be. It's the loved ones that might not really understand that. And there is a series of documentaries called Take Me Out Feet first, which is absolutely wonderful. Kind of encompasses all of this that we're talking about. And I remember the first time I watched it with Dr.
Kathleen Carmody [:Adkins, I was on pins and needles. But it was a beautiful, beautiful story about how this particular documentary, of this one documentary, how the family planned it and how the adult children and grandchildren finally accepted it. And, you know, I say we can't choose how we come in the world, but we may be able to kind of plan how we go out. And I think that is just so important. Another tool I use is just extremely practical. It's called the Noke box. Next of kin, I order them for all my clients. It's a box.
Kathleen Carmody [:It's like a file box. It has every single thing you need in there. If you have. If mom and dad live in Florida and they have keys for their bike lock, there's a spot in there for that. All the way up to the attorney to absolutely covers everything. That is a good way to get started on something that is not so daunting and frightening. So I think just developing a relationship with somebody in the community that knows what you may be facing and how to look at it.
Brett Johnson [:Sounds good. Yeah.
Carol Ventresca [:Thank you both.
Brett Johnson [:Yeah. Well, many thanks to our Expert guest, Molly McMahon Graziano, director of outreach for Ohio End of Life Options, and Kathleen Carmody, owner of Senior Matters Home Health Care and Consulting, a certified death doula and certified dementia practitioner, both of them joining us today. Lesnar, thank you for joining us. You're going to find the contact information and resources we discussed in the podcast and our show notes and on the website@lookingforwardourway.com and we are looking forward to hearing your feedback on this or any of our other podcast episodes.
