From WXXI news.

This is Connections.

I'm Evan Dawson.

Our connection this hour was made on August 5th, when New York State's new medical aid in dying law became active.

Supporters, including Governor Kathy Hochul, have described the law as being a way to provide dignity and options for people who are within six months of the end of their lives.

13 states and the District of Columbia also have these kinds of laws on the books.

Jennifer Sanfilippo is an end of life doula.

She has spoken to us before about her public events that provide both information and just a form to listen for people who are dying, or for people whose loved ones are dying, or people who are thinking about end of life choices.

She's convening another form called Dying to Talk on September 18th.

This time focused on the medical aid in dying law.

That event will include two end of life doulas from the state of Vermont, which has had its own medical aid in dying law since 2013.

We're going to talk this hour about how Jennifer does her work in this space, especially with this new law on the books, and it's not necessarily a deep dive on the law, although I know there will be questions or comments about this new law.

This is part of a series of conversations we will have about the medical aid in dying law.

And one other housekeeping note.

You will hear me refer in general to laws like this as physician assisted suicide laws or medically assisted suicide laws.

That is AP guidance.

The Associated Press asks, when we speak generally about it, differ in those terms because medical aid in dying is attached to some sort of I mean, I guess they say it's political.

So, you'll hear kind of both throughout the hour here.

And I know our guests have strong thoughts about that as well.

Let me introduce our guests.

I mentioned Jennifer Sanfilippo, who is an end of life doula.

She's a master's student in mental health counseling, and she's an author.

Welcome back to the program.

Thank you for being with us.

Thanks, Ivan.

Thanks for having me.

A little Merrill is with us, a hospice nurse and adjunct professor at the School of Nursing at Saint John Fisher University.

Thank you for being here.

Thanks for having us.

And joining us on the line is Mandi Zucker, who is executive director of End of Life Choices New York.

Mandi, welcome to you.

Thank you for being with us.

Thanks for having me, Mandi.

How do you feel about that associated Press guidance that says we we need to say assisted, physician assisted suicide.

Does that term bother you?

Yes.

Okay.

Probably say more.

I would, I would please elaborate.

Yeah.

I don't know exactly how medical aid in dying and suicide have gotten.

Mixed together, but they are incredibly different.

And it is incredibly harmful for people to hear that medical aid in dying has anything to do with suicide because they're very, very different.

First of all, patients that are choosing medical aid and dying are choosing it because they're dying.

They're actively dying, and they have no choice.

And this is really just an option for them to be able to control the timing of their death.

Let me ask our guests in studio just briefly, Jennifer Sanfilippo, anything you want to say about the terminology that people are going to hear this hour?

Yeah.

Yes.

First of all, Evan, I would like to honor the space.

I mean, what we're going to talk about can be very activating for people.

Very emotional.

And I, I come to this space personally with a lot of affection for, you know, humankind for the, of the mystery that that is life and respect for those who are struggling with their sorrows of loss and the existential crisis that comes with that.

And that's why this conversation is so important.

Thank you so much for having us because we were talking earlier.

We're getting further and further away from a connectivity to death and dying every week.

I read in my Wall Street Journal the chase for longevity for for living longer, living healthier living.

There is there's a company called Don't Die, which was founded by a, mega millionaire who wants to use AI to help people live forever.

Yeah.

Yeah.

And this is, this is this is part of what happens to us as human beings.

And I feel like in our culture where we're losing that connection so that the people who are going through, which is going to be everyone and a lot of people right now, they feel so alone and almost wrong for grieving, for their bereavement, for, honoring, trying to take time for themselves and honoring that space.

And in my clinical practice, I see it more and more exponentially.

So I want to start there just to open this conversation.

Welcome everybody into this community.

All are welcome in this conversation.

And you are not alone with regard to, the conflating of, of suicidality with, medical aid in dying.

Even the American Association of Suicidality has come out and, identified them as two completely different things.

Suicide is often a reflection of, depression, despair, mental health challenges, whereas medical aid in dying is very solidly a choice, as Mandi has said, a choice to end one's life when they are already terminally ill and qualify, you know, with a very stringent, set of regulations.

Alida, can you want to add to that?

Alida?

I think you said it really?

Well, I think I would, just add that suicide is often a very isolated, rash act and medical aid and dying is a very thoughtful, lengthy process that has, a whole host of supports wrapped around it.

So just from that sort of implementation or action perspective, they're also very different.

I want to ask Jennifer about something that you also kind of alluded to, the notion of having a reverence for the mystery and the beauty of life.

Some of the opponents of medical aid in dying loss have sort of indicated that they think there's not enough respect for life, that this is, that there's something callous about this.

And we are at this interesting time when technology is prompting people to think about like, you know, can we live another 50 years, go live another hundred, can we can we live forever?

And I find that interesting because, my best guess is that most people, if they if you ask them, would you want to live longer?

Most people probably say yes.

I don't know, a whole lot of people would say, I want to live forever.

Forever is a long time.

And, but everybody may have, you know, slightly different views on this.

I just bring this up because you are clearly saying that though you support medical aid in dying, that does not mean that you don't have absolute, and respect and love of life.

Correct.

Of course.

I mean, I do come to the conversation and talking about death and dying through through the lens of of what makes your, you know, a beautiful life for yourself.

You know, I, I do support the choice of medical aid in dying, but I'm not here is the cheerleader to say, you know, everybody, everybody make this choice.

It's just for me.

It's another doorway into the conversation with people about what is important to you.

Why are you, wanting to talk about this?

What are you needing?

You know, is is there something more there that that we can have a conversation about that maybe this isn't the option.

Maybe it is.

But let's let's really find out.

It's part of that end of life conversation that I think people should be having before they even get there.

I mean, you know, I think that when Jim, before Jim died, he used to see Jim.

Oh, I'm sorry, my husband Jim was my husband, and he died in, 2020 July 2020 of, a really aggressive leukemia diagnosis in January.

He died in July of that year.

And he was a hunter.

And while he was thriving before any kind of diagnosis, our conversations about death and dying were, oh, well, you know, if I ever get sick, just, you know, take one of my guns and we'll go out in the woods and put me out of my misery.

And I'm like that, you know, that's such a flippant like, it's not useful at all.

And I think a lot of people can relate to that kind of a conversation.

But, you know, you really need to while you're while you're capable and able in alive today, you need to have more depth to those kinds of conversations with your loved ones, because what Jim was talking about was not useful when it came to his final six months.

And, almost painful to kind of think about, to feel like we missed an opportunity.

We missed an opportunity to really dig in to what was important to him and how he wanted to go.

Yeah.

And let me turn this to Alida, who is a hospice nurse.

And I want I want to hear your thoughts on this.

And again, this is not sort of this was not a debate about the law.

It is.

And we certainly are open to listener feedback and questions, comments.

And I already have some emails on that which we'll get to.

We're going to talk about the September 18th event coming up here.

I just want to ask to briefly, you know, when Jennifer talks about the way Jim was when he was, you know, before his diagnosis, before he was really looking at the end of his life, he would make the kind of comments that probably, probably a lot of people make.

I might make them flippantly, you know, that.

Well, if I ever gets to a certain point, you know, you know, and people talk that way and people think about the end of life that way.

I think some of the opposition would say the way you feel today without a diagnosis might change.

If you're in those final months and you want to extend it.

And does that have any bearing on how we look at end of life?

Have you seen people's minds change?

As a hospice nurse, I would say I didn't think I would want to keep fighting and now I want to keep fighting.

And does that change how you feel about medical aid in dying?

I think you're right.

None of us can predict how we're going to act when we actually get there.

And sometimes anticipation and reality are not the same.

But I think I'd like to, put, medical aid in dying in the context of it is one more option.

And all in all, the options that we have as we think about end of life choices when we're terminally ill, there are different ways that we can choose to manage that, that illness.

And, and, you know, our eventual dying.

And so I think if we think about it as this is a new option, that's why we're talking about it today.

But there is a whole host of things that I think when people have, you know, say that, you know, just bring me out, just bring me out with my gun and shoot me, you know, to explore those options of, you know, really, what are the needs that they're talking about?

And, to see if there are other things that would then address those things that they're most concerned about their hopes, their worries, their fears.

So, you know, people can choose to continue all of their medical treatments.

They can, you know, go into palliative care and hospice care, which is a form of that voluntary stopping of eating and drinking, palliative sedation and medical aid in dying.

And so I think it's just really important to recognize this, Jennifer said.

We're not here as proponents of, you know, medical aid and dying as the solution and the option for everybody.

But it's one thing to consider, with individuals among a host of other ways, that they can choose how to spend their remaining days and months.

Yeah.

And let me read an email, and I'm going to ask, Manny Zucker to respond here.

An email we got this morning when we talked about the show that was coming, came from Alex, who says, I'm in Canada, as had medical aid in dying since 2016.

And, he, he talks about this concern about, you know, maybe getting parts of it wrong.

So let me kind of go back here.

All right.

So he says much love and compassion to everyone in the field of hospice and palliative care.

And who helped this bill become law.

I appreciate lawmakers tying this specifically to terminal illness, which I think will avoid any of the institutional confusions that have happened with Canada's medical aid and dying practice.

I can't say I'm looking forward to the nightmare of obtaining prior authorizations for this.

Unless HMOs will be kind and make it a relatively painless process on their end.

So there's a lot there.

But, but he is Mandi Zucker, referring to some of the expansions in Canada's laws that happened in 2021.

And the debate about that includes some of the following.

So after Alex sent me this email, I'm trying to get myself caught up to speed.

And this is part of what I'm reading from journalists in Canada.

The rules expanded to allow people with serious long term disabilities who are not terminally ill to qualify in Canada for physician assisted suicide in the APS term there, or medical aid in dying.

Data shows a large portion of non-terminal patients who choose to die are living in poverty.

In more isolated cases, there have been situations in which veterans or disabled individuals have called for help with social services and staff members voluntarily brought up medical aid in dying as an option.

Activists who fought for the law are asking for more safeguards so there aren't improper approvals.

So that's some of what Alex, I think is talking about, in his email, Mandi, are you concerned?

Do you feel like the outline of what's happening in New York state is where it should be and it shouldn't move?

And are you concerned about expansion at all?

So medical aid in dying in New York has only been available for a few weeks.

But around the country, it's been available for 30 years.

And there has been no significant expansion.

You mentioned a few things, so I want to try to touch on some of them, but the other reality is, and this is not necessarily a good one, but it is what it is right now.

In this country, most people that use medical aid and dying are white, educated and fairly wealthy.

So we have not seen any, significant, increase in numbers for people who are not white, educated and fairly wealthy.

So we're not seeing a push for, you know, poorer, less educated, folks to use medical aid in dying.

In fact, you know, we can imagine that some of those people don't even know that this law is available.

So there's probably an access issue.

It is not, you know, it's not a concern.

And it certainly has not been proven that there's been any coercion or push for people who can't afford medical care to use medical aid in dying.

Do you think some of those either criticisms or concerns in Canada are valid?

I can understand the concern, and I think probably 30 years ago or so, they were legitimate concerns because we didn't have evidence to prove that that's not what's happening, but that is not what's happening.

And, you know, New York is a pretty liberal state.

And yet it took us over ten years to get this bill passed.

So it is very difficult not just to get this, you know, law implemented, but also to make changes to last like this.

Canada has its own special machine.

And, you know, there's laws all over the world about lots of different things and other countries that have nothing to do with the United States.

So we're a very different culture, government, legislative process.

I don't have concerns that we are going to expand into things like that.

And then on the other side of this, I have an email from David in Ovid who feels like it's too restrictive.

He says, I think in some ways, the criteria for eligibility for New York's law is too restrictive.

I am currently, thankfully, in remission from a very serious form of bladder cancer that has a high rate of recurrence if or when it does return.

I do not want to end up with a plastic bag for a bladder.

Unfortunately, this law is no real help for me.

That's from David and over.

I mean, first of all, David, I mean, I'm wishing you all the best health, for as long as possible.

And I am sorry that you feel like you're facing something that might be, I mean, I don't I don't know how to say this about euphemism.

I mean, deeply unpleasant.

That doesn't even cover it.

I understand, but, Mandi, what would you say to someone like David who looks at this law and says, I actually think it's too restrictive?

Yeah.

I mean, that may be true.

This law is pretty restrictive.

It is meant for a very specific group of people.

Although I would also say to David, you know, part of what we do at End of Life Choices, New York is advocate for all of your options, and you do not.

One of the options that's available to everyone legally is refusing treatment.

So if David does not want a plastic bag, he does not have to have one.

And we're certainly happy to talk to him about that.

That's one of the reasons, actually, why we feel so good that this law passed, because it has, opened up.

I think Jennifer said this opened up conversations about end of life, which is exactly what we want to do.

Well, Jennifer Sanfilippo, probably better than anybody I've ever met, talks about death and dying, did so in her book, tells her husband story, and then convenes these cafes, these public events that help people do that.

And you've decided on September 18th, to do another event.

So why don't you tell people what is coming up here first of all.

So, on September 18th, I'm being joined by Mandi and Alida and, two keynotes from Vermont to death doulas Lindsay Warren and Casey March and, locally.

Also, we've got Doctor Reynolds from Rochester Regional who is going to be speaking to local implementation at the systems and around the Rochester area.

You know, I approach these forums, to open up the conversation for people who wouldn't have them normally, professionally, like doctors usually get their their rounds and lawyers get their trainings.

But this is for caregivers bedside, you know, friends and family, people who are struggling with these types of conversations and choices and options to get a view first into in this particular one, this year, what this law says, what the local implementation is, and then to get two women who are seasoned, experienced at bedside, you know, they've been working with medical aid and dying in Vermont since 2013.

So they're going to speak to what the complexities are, the considerations, the nuances as they're taking care of their patients.

And I think it's a beautiful opportunity for those of us who are at the very beginning of working with this choice to understand what it really feels like.

Bedside.

So I'm really excited about that.

And then afterward, we'll do a bit of Q&A.

But more importantly, then we break out.

I've got ten, mental health professionals who are coming in to lead, breakout groups for the attendees to be able to talk about it, you know, in a space where, you know, we don't we don't have the opportunity to talk about what they've heard, what they're thinking.

They don't have to just talk about medical aid and dying in these groups.

It's it's kind of like, mini death cafe with mental health professionals as facilitators.

So that's a Friday, September 18th.

Today, September 18th starts when it starts at noon, it ends at five.

And I have a really interesting, sponsor for the actual refreshment piece.

She came to me.

She is the head of an Aqua mission.

She's the president of an Aqua mission facility in Vermont, which she will have to speak to.

So come and talk to Candice.

Best.

But she's trying to get the word out.

It's instead of, cremation.

It's, disposing of the body through, water process, which is really fascinating.

So she's going to be on hand to do people need to register to come?

They do need to register.

There is an Eventbrite site.

We'll put a link in our show notes that people want to find that if people choose to do that.

So there is a, paid ticket amount, but I, have scholarship availability for because I don't want I need to pay for the program, but I also don't want that to be a barrier.

So anybody who would like to come but can't afford it can reach out to me too.

So, I mean, I should be clear, in case it wasn't obvious already, Jennifer's work in so-called death cafes and these kind of conversations has spanned a lot of ground about death, not just medically in dying law.

It just happens that this new laws on the books in New York state now, it's timely to have this conversation.

But one of the things that you and I talked about when you were here before was like, how bad we are at talking about death or how bad we are confronting the idea that it will happen.

It will happen to all of us.

Unless I is really is more powerful than I think it really will happen for all of us.

I mean, it's going to happen for all of us.

And we don't like talking about it.

It's uncomfortable, which I understand, but we don't.

I mean, in my experience, my own family, we don't do all that well when we're staring at really important, you know, sort of fork in the road moments either.

Not just when everybody's doing great.

I still wish my mom and I could have better conversations about this.

I wish we would have had better conversations about, the loss of my stepfather two years ago, because for ten years, he kind of kept dodging all these terrible illnesses until he couldn't and she couldn't talk about it.

Is that is that an argument that says, hey, medical aid in dying?

It's yes, it's an option, but you don't want to be in a situation where people are in general not good at talking about death.

And then you get a diagnosis and it's like, that's it, I'm out.

Put the put the pedal down, this decision and make that happen as fast as you can, as opposed to being careful, being thoughtful, involving other people if you feel like you should when we're already predisposed to not doing that well, does that make sense to you?

It does.

And I actually have I have two, two big thoughts going.

And one of them goes to the actual, steps you have to go through.

It's not in medical aid.

And yes, yes.

And I'll actually let Alida speak to that.

But the actual conversations to have prior, you know, you made me think of something as you were speaking to how your mom is still having a hard time talking.

You step dad was having a hard time and Jim was having a hard time pre illness.

What?

I love about the death cafes and the that I have at the libraries, at colleges, at high schools.

The funny thing is you're in a room.

Strangers, people come.

I'm always full and it's a room full of strangers.

Some people come with a friend and they they open up and say all the things that they can't say to their family members.

And while it is, but it's practice, they practice talking about these things, and then they get ideas from other people in the circle.

And it's not none of them are experts.

They're all literally like building this little hour and a half community.

And then they feel, they feel relieved, unburdened.

They feel like they've learned a few things and practice some skills, and then they go out and talk to their family and friends.

And it's it's really a beautiful process.

So I just I wanted to I wanted to loop that in.

Well, I love that.

I mean, I love that you do that for people because we all need that sometimes.

And you're also making an important point that with medical aid in dying, we should not present this as if you get a diagnosis, you know, like an hour later, you could be taking some sort of medication, ending your life.

But there is a process.

It's a little more extensive than that.

Do you want to speak to that?

Yeah, I'd be happy to.

And, Mandi, feel free to jump in.

But there's there are three medical, assessments that need to be done.

You have an attending physician who's your primary physician who does an assessment?

You have a consulting physician that needs to do an independent assessment.

Those two people, their assessments need to agree.

And then after that, you need an assessment by a, psychologist, psychiatrist or neurologist that, concurs with the fact that you have, decision making capacity.

So there are three medical appointments that are involved.

The individual has to do a, written and a verbal, request to die.

It has to be recorded and put in their medical record.

So, and then they have to wait five days after all of that before a prescription can ever get filled.

So at best, this is, it is not an overnight process.

And, and I think the other thing that's really important to say is that at any step along the way, people can always change their mind and they can change their mind up until the point that they're about to ingest medication.

So, it's a lengthy process.

A lot of thought goes into it, a lot of independent assessment, and the individual always retains the ability to change their mind.

I think the other thing I'd want to add on to what you're saying, Jennifer, and to, as well, Evan, that part of the one of the benefits of this being an opportunity to provide conversation for people along the way, because they are planning they do have the ability to plan when their transition occurs is perhaps it's the opportunity to, avoid, deathbed reconciliations, which is what I call them.

And we see in hospice not infrequently that somehow people have not had the important conversations up until that point.

And then, you know, family flies in at the very last moment, and perhaps their loved one isn't even able to to converse with them at that point.

And I just think there's nothing would be nothing harder for someone to live with than knowing that they had not resolved some of those issues and for the rest of their life.

Now they're carrying that loss about what they didn't have with their loved one.

So I think this, you know, being deliberate about choosing when one is going to die, it makes things real.

And it gives not only the individual, but their family members that they're sharing this information with the opportunity to have those conversations while they still can.

You want to add to that?

Mandi Zucker I was just thinking, the other thing that, patients have to do is it has to be self ingested.

So there's always this idea that that the patient is actually directing, so it's not coming from someone else.

No one else can inject you with medication or anything like that.

So it's self ingested.

And many of the patients that think that they're going to be doing it, we always say you're considering medical aid and dying until you actually take the medication, because many of them choose not to take it.

So they all go through the whole process and then not do it for a whole host of reasons, but it gives them a lot of comfort knowing that they can.

Well, when we come back from the other side of this only break of the hour, I've got a pile more emails to read.

I should probably read the email address here, but I feel like Jennifer Sanfilippo.

You probably feel when you host death cafes they fill up, we could probably fill a full day of talking just with people's experiences, but you're welcome to do that.

You can share your thoughts and Connections at dot org if you want to call and talk about medical aid in dying, which is now legal and on the books in New York State, as of about three weeks ago, it's 844-295 TALK.

It's toll free, 844-295-8255 If you call from Rochester 263-9994.

And you can join the chat if you're watching on the YouTube channel for WXXI.

This is not a debate about medical aid in dying.

This conversation about the hard conversations and about understanding medical aid and dying for people who are struggling with those conversations to begin with, Jennifer Sanfilippo is an end of life dual, she's a master's student in mental health counseling.

She wrote a book that I think is really powerful about her husband, Jim, and what they went through together and what she has learned about confronting death and helping others do the same.

And she has hosting an event coming up on September 18th.

If you want to be part of that, we'll post the information in our show notes so you can register a lead.

A will be part of that as well.

A hospice nurse and adjunct professor at the School of Nursing at Saint John Fisher University, and Mandi Zucker is with us, executive director of End of Life Choices New York.

Your feedback on the other side of this only break.

Coming up in our second hour, we bring back perhaps the most shared conversation on Connections this year so far, shared across a variety of platforms in which the comments of Major General Jamie Shanley went viral.

She is the first woman American woman to hold a command post in Africa, but she was dismissed by the Trump administration.

She has very strong views on how the administration has treated women in the military and women in leadership.

You'll hear them next hour.

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This is Connections.

I'm Evan Dawson.

All right.

First of all, an email from Vancouver, Canada.

And David, who is formerly a finger Laker who lives in Canada.

Now I think this is important clarification because when we do talk about medical aid and dying, I do think it's fair to ask what's happening in other states and other countries that are doing it and maybe doing it differently.

He wants to clarify what Canada is doing.

He says the Canadian government expanded eligibility for medical aid in dying in response to a Canadian Supreme Court ruling that restricting the option to only those very close to death violated the basic rights guaranteed in Canada's Charter of Rights and Freedoms.

It was required, therefore, that others suffering grievous suffering with no realistic hope for relief for that suffering otherwise have access to medical aid and dying too.

And what David is saying is, yes, it expanded to include people who don't have terminal diagnosis, but it did not expand in a way that says, well, anybody can get it now, and everybody's going to choose medical aid in dying just because you had a bad day.

That is not what's happening in Canada.

You certainly can debate about whether you feel like that's a fair expansion or not.

And there have been a lot of debates going on about that.

And it's also, as David points out, still in the Canadian courts, but that's an more accurate way of describing it, and I appreciate that.

From David.

Charles wrote this morning.

And Charles is a veteran.

He says, he thinks anyone who supports medical aid in dying has lost the right to argue that gun control is needed to prevent suicide.

He said that was always just a ridiculous justification.

Now it's more so.

And stay away from the Department of Veteran Affairs before you give them any ideas.

And he is, he's very concerned about some of the Canadian cases where some veterans were told and, you know, not this is not a uniform policy, but some case by case have been told about medical aid and dying.

Charles is pointing out the rate of suicide among American veterans is very high.

That's tragic.

And he is concerned that medical aid in dying will lead to more veterans dying before they should die.

And Mandi Zucker, as the executive director of End of Life Choices New York, do you want to respond to Charles there?

Yeah, I mean, I first of all, I agree with Charles.

The rate of suicide amongst veterans is way too high.

And it's, you know, a tragedy.

Medically, in dying in the United States is not used for mental illness, for, many of the issues that bring people to suicide, you must have a terminal physical diagnosis with a prognosis of six months or less.

So it is very, very different.

And it does not open up a door for people who just don't want to live anymore.

This is really for people who are dying.

And in relation to Canada and the criteria about suffering, it's interesting because there is no law in the United States that talks about suffering.

Suffering does not come into play when we're talking about medically dying, and it's all about terminal diagnosis.

So you must have a terminal diagnosis.

And, you know, for better or worse, the amount of your suffering, does not play into whether or not you become eligible.

Let me read one more email.

That again shows the range of views on this.

This from Matthew.

He says, Evan, I cannot help but think about various terminal diagnoses that have been rendered to people by doctors that have been wrong.

Perhaps the most famous example of this was the two years Stephen Hawking was told he had to live, and he far exceeded that.

There are numerous other anecdotal stories about others who were given various timelines to live, and those people also lived much longer than they were told they had by doctors.

If people want to take the steps to die, that is their choice.

However, doctors can be wrong.

To me, it is almost as if accepting the amount of time that a doctor tells someone that they have to live becomes self-fulfilling.

I don't know how I would react, but I would like to think I would choose to fight to live rather than fight to die.

That's from Matthew.

The Stephen Hawking story is he got an ALS diagnosis.

I think, in the 1960s, and at the time that two years was was the was an average.

And he had a very slow moving progression of ALS.

And obviously, ended up with a lot more than those two years and, you know, gave the world many gifts in general.

Matthew was saying he would not take that diagnosis and say, that's it.

If it's six months, if it's three months, if it's a year, it's three years.

He's saying he wants to push to make it longer than that, and, let me just ask our group what they make it.

I mean, Jennifer, you've talked to a lot of people about end of life here, and I understand Matthew's viewpoint there.

I mean, I, I can understand the idea of saying, hey, if you give me six months to live, I'm going to make it nine, I'm going to make it three years.

And, and not convince myself that that's like a firm number, that that's unchangeable.

What do you think?

Sorry, I'm a little unclear, but what I, what I think is, Matthew is talking about misdiagnosis.

Okay.

So fortunately, you know, I it brings up for me the great conversations with I've that I've had with our local medical professionals in palliative care, who speak very much to the need to really understand what the patient is going through.

And, you know, making sure that people have the correct diagnosis as a patient, you have choice.

You can get second opinions.

Third opinions.

You can go other places if you get a six month diagnosis, it doesn't mean that again, overnight, you're going to get a prescription and end your life and then find out as family finds out later that it's premature.

That was a wrong diagnosis.

There's there's a lot of time involved.

There's a lot of agency.

There's a lot of opportunity to get different diagnoses.

And there are a lot of doctors involved who want to make sure that you have the correct diagnoses and the the exploration of what is behind asking for medical aid and buying, if it's financial, if it's existential crisis, if there are things that can really be explored more deeply rather than just, you know, handing out these prescriptions, you know, openly, freely, you know what I mean?

Alida and Mandi, are you have anything to add?

Yeah.

Well, I would also just add that, you know, that's one of the safeguards that we have is that two doctors have to determine whether or not you have this six month prognosis.

Most people that back that end up using medically and dying don't want to die, right.

They are going to choose to live as long as they possibly can, until they have to take the medication, so that they can die in accordance with their own values and wishes.

So most of these people are not saying, oh, I have a six month prognosis.

Let's start the process today, and I want to take the medication in ten days.

Most of them are trying to live as long as possible.

I think it would be useful to understand, the perspective of, of what happens when when someone chooses medical aid in dying.

As we mentioned, New York State's only been online with this legally for about three weeks.

But 13 other states have been doing this for various amounts of time.

It's Vermont is where two end of life doulas are coming from.

Going to participate.

They're working in Vermont, which has had medical aid in dying since 2013.

And, I know Alida knows, a little bit about what's happened there.

You've been in touch with some of the folks in Vermont.

Can you describe what that process is like?

The medical aid in dying process is like for not only for the person choosing it, but for people around them.

Yeah.

Thank you.

So, in anticipation of, being legal in New York, I wanted to get some experience with medical aid in dying so that as it became legal here, when people wanted some support with it, I had some direct experience and could offer that to them.

So I actually, have shadowed Lindsey, who is one of the end of life doulas who will be at our symposium, in a couple of weeks.

And I have to say, it was really a most beautiful experience.

Lindsey had worked with the family for, quite, you know, a few months ahead of time going through that whole process of the, assessments and the evaluations.

And in Vermont, one thing that's different about New York is, they don't have a residency requirement.

So this particular, patient and his family were from Florida, but that adds a whole other level of things that are arranged for, you know, where are they going to be?

And getting their, their medical care.

But in any case, because people come from out of state, there are different places that are set up where people can go and have their dying experience.

We happen to be in a really beautiful little retreat center.

That somebody there, Fran, she's a, retired, hospice chaplain.

And so we were there, the end of life doulas, the chaplain, the, the patient, his wife, her sister and they were they were so ready, so prepared.

And there was.

And they were all in agreement with what his choice was.

So the experience itself, you know, they they came in, we gave them some time, we mix their medications.

We chose to do just some end of life goodbyes and rituals with them.

And really, you know, then he was very comfortable in a reclining chair.

He's, you you mix the you just you mix the medications and two ounces of apple juice or water.

They drink that.

And for the person, it's really it's relatively quick for the, the patient.

On average, it takes about four minutes to go into a very deep sleep coma like from which they do not wake up again.

And then from that point forward, average time to actually dying is, about an hour and a half.

But that can really range from, you know, less than 30 minutes to, at the very, very outer edge, 20 hours.

But on average, it's about, you know, an hour and a half or two.

And so during that period of time, the individual, they are not aware of that at all.

So it was just really can be a very beautiful, peaceful time, especially because the family has had time to prepare, for that experience.

And, and I think it's also important to say that having somebody else around to support the individual in their family is incredibly important.

So that family can just be family, and family isn't, you know, worried about mixing up medications or, you know, how do we know if the person has actually died or not?

So, you know, I think as we're going forward here and individuals might be contemplating whether medical aid and dying is for them, is to also have an outside support person there to help navigate the system, to help get the medications, and to be there on the day of to support the patient and the family.

I the the picture you paint in is to me.

So.

Solemn and beautiful, and mature and accepting.

I feel pulled in so many different directions by this conversation.

I have to admit, you know, Matthew's email I can relate to in some ways.

I mean, I'm I would like to live as long as possible.

I would like to see my children grow older.

I would like to maybe see grandchildren someday.

I would like to be part of the world for as long as I can.

I prefer it to not.

I mean, I didn't mind it 500 years ago when I wasn't, but, you know, I mean, I prefer it knowing it.

I prefer it to not.

So I can relate to Matthew there, but I also feel like, you know, I, I don't know, I think about Senator Ben's former senator, Ben Sasse, who has had this amazing story this year that he is dying, or he has stage four cancer and was, I think he was told he had probably 3 to 6 months to live last November.

And he's, still doing interviews and talking about his experience and his.

He also has incredible medical treatment and advantages there.

But that's a those are beautiful interviews.

If you haven't seen Ben Sasse those conversations about dying I would recommend it.

Then I also hear these stories and I think it is that what better way to have to go out than be surrounded by people and make them mature?

Choice to accept that death is part of life, but death is not quitting, it's part of life.

And that kind of, so I just, I feel pulled in all these directions.

But, I just appreciate the idea that people have the chance occasionally, you know, I think to make that kind of a choice.

One of the, other things to say about, you know, where we've wrong in our prognosis.

You know, one of the trickiest things for people who are choosing medical aid in dying is this.

Mandi said they want to live as long as possible.

And so it's for them choosing when is the right date that I want to ingest these medications, and I want to get up to like the very to the very day when I'm still able to enjoy life and, you know, be with family.

But I don't want to go one day past that.

That's really tough.

And I don't want to go one day past even more importantly, having capacity.

And so that becomes the really the tricky point.

But so I don't, I don't really see, you know the question that was raised as being so much of an issue because most people are going to really wait if, if the prognosis was off by even a year, there's most people are still going to wait up until that very last moment when I'm now, because they are experiencing their own symptoms, they can choose to delay or change their mind if they're doing better than a prognosis.

Absolutely.

So Matthew's not wrong that sometimes a prognosis of six months to live is a best guess based on medical information, and there's nothing corrupt about it.

I don't think Matthew's saying it's correct, but he's not wrong to say that it can be inaccurate to the outcome.

Of course.

I mean, no one can perfectly tell you the minute the moment you're going to die.

Three months, six months, nine months, five years from now.

But I think what Alida is telling us is, you know, fear not that if you if you don't want to be confused by a diagnosis that's wrong and end your life too early, and you're doing a lot better than you thought, you can continue your life.

And you've probably seen that.

And I'm sure other states have seen that too.

Yeah.

Yeah, absolutely.

Yeah.

That option is really important.

And they want to add there are many Zucker.

Well, I think you're absolutely right.

We've spoken to many people who have said, I think this is the date.

And then, you know, their daughter gets engaged and says, I want to wait.

I'm not I'm not ready.

And that's okay.

They are absolutely allowed to do that.

This is just one option, and that's how we want it to be, is an option for them if they choose to take it, I think.

Mandi, I'm not sure you mentioned this earlier, but of all the prescriptions that get written, a third of people never use the medication.

So there's still, you know, that that choice.

But as Mandi saying, it's, it's that security of knowing.

But if I don't like how things are going, if I'm ready to die, I can choose that date.

But, you know, a third of people never take the medications.

No, it's a significant number.

It's probably higher than I would have thought.

It's really interesting.

And talk to me, Jennifer Sanfilippo, about the word ready.

The notion of being ready for a person who may be dying, or for a family member who is watching someone, in decline, can any of us really be ready?

I mean, how do how have you come to think about the word ready for that?

You know, it's funny because I think of that through through my own experience with Jim, my husband.

I think, gee, I wonder if this was available, if he would have chosen this.

And I don't know.

I do know, that he didn't want to suffer.

And what a lot of people say to us, let's say to me, in clinical setting and in death cafes, is they're more afraid of suffering than they are of being dead.

Of course, I think it's one of the biggest fears.

And I remember Jim, saying when he when we knew he was going to die, when he got discharged from the hospital, he had called together, you know, all the different family members came through.

It was like it was almost like a living wake.

So he could say goodbye.

And at one point we were at, our table in the dining room, and my parents were there and my older sister was there, who's a physician, and he looked directly at her and he said, you know, when it's time, I don't I don't want to suffer, you know, just I want to go to sleep.

And, the next I want to say day he experience a terminal agitation.

If you read the book, you know, he was yelling at us in Italian.

He wasn't making any sense.

And it was really, really disturbing.

And when he finally kind of settled, we got him settled.

He was seated on our bed and he had his hands on my hips.

I was facing him and he looked up at me and he just opened his mouth, meaning he wanted us to give him the morphine.

And that's when he was ready.

And that's what ready means to me.

I don't think he was ready to Matthews and some of our other our email people calling in or saying they have nobody wants that last, you know, second with their family, he wanted it with his kids.

And he had, you know, he didn't have a choice.

He had to die.

But he was ready to go to sleep.

And he was done.

He was done fighting.

He was done with that struggle.

He was done suffering.

I really appreciate your ability to talk about this.

You're helping a lot of people.

And one honest question I would just kind of put out into the Connections ether that maybe someone can send me an email about, because this is something I truly don't feel like I understand.

Well, some of the most stringent opposition to medical aid in dying laws have come from social and Christian conservatives, and I respect the concerns that have been articulated.

But to me, what I think I don't understand is if you believe in salvation, if you believe in being with God, and in eternity of an afterlife, why are you fighting so hard when someone doesn't have any quality of life left or is suffering so much and you could see the pain?

Why can't you let go and say, okay, they don't have to suffer here and they're going to a beautiful place?

I really believe that.

I don't think I understand it, and I'm not saying this to belittle at all or to demean someone.

I would love to email me and just kind of give me an extended thought about that.

If if that fits, sort of fits how you feel, because I would like to understand it better.

But I understand people like Matthew and others who who feel like if it's their choice, they're going to fight, fight, fight like, fight to avoid death at all costs.

I get it, I do, I do.

So there's just there's a lot here.

And you see, we're just scratching the surface.

The hour is up here.

And look at what we've done.

Look what we've done.

So if you want to see Jennifer and Alida and Mandi and and of life doulas from a state that's been doing this since 2013, that's Vermont.

The event is Friday, September 18th.

It starts at noon that day.

They do want you to register and all the information, will attach when we post the audio for this program in our various places, you can check the show notes and you can register in advance and you better register.

Don't show up that day because Jennifer always has full cafes.

I know I've talked to people who've been there.

Final thoughts for me.

I'll give you many.

The floor here.

The executive director of End of Life Choices, New York.

What do you want to leave with the audience?

I would just say that if people have questions, if they're looking for clinicians, if they need support to, consider this option, that they can reach out to us at End of Life Choices New York.

And we have, a list of doctors and, volunteers and all of the people that you need if you are considering this option to make sure you're well supported and prepared.

And final thoughts from you, Alida, about 30s.

Go ahead.

Yeah, that in Rochester, I'm available to support people with everything from I'm considering end of life, I'm considering medical aid and dying to.

I'd like somebody to be with me for hands on support.

So, feel free to reach out to me.

My email, I believe, is in the the show notes.

Okay.

Yeah, we'll add that as well.

Got to keep it tight.

Final thought from you Jennifer.

Thank you so much Evan.

It was a pleasure being here with Mandi and Alida and you.

Thank you for keeping the conversation going.

Well, I think you're doing that.

Jennifer Sanfilippo is an end of life doula, an author, a master's student in mental health counseling.

Thank you for reaching out.

Thanks for being here.

Thank you.

Alida Merrill is a hospice nurse and adjunct professor at the School of Nursing at Saint John Fisher University.

Thank you.

My pleasure, Manny Zucker.

Nice having you, executive director of End of Life Choices New York.

Thank you for being with us.

Thank you.

More Connections coming up in a moment.

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