(soft music) - In the US, April 15th is tax day and April 16th is National Healthcare Decisions Day.

That's inspired by the famous quote from Benjamin Franklin that nothing can be said to be certain except death and taxes.

And yet, we spend much more time prepping our taxes than preparing for the care we want at the end of life.

The vast majority of people say they want to die at home surrounded by loved ones with dignity and comfort.

But all too often that is not what happens.

In New York State, folks are more likely to visit the emergency room hospital or a skilled nursing facility during the last year of life than in other parts of the country.

At the same time, New York State has the lowest hospice utilization in the United States.

Over the next hour, we're going to ask why and explore what options are available to have access to the quality of life and death that we say we want.

To get started, we visited the intensive care unit at Saratoga Hospital to hear the perspective of their attending physician, Dr.

Numad Rashid.

Take a look.

- My name is Dr.

Numad Rashid.

I'm the intensive care unit doctor.

I take care of the critically ill at Saratoga Hospital when they are their most sickest and most vulnerable.

They're in the ICU for as long as they need.

In the ICU, we have generally the rule of thirds.

One third are well coming into the ICU.

They have a serious medical problem.

Maybe they've had a major operation and they go home without any deficits and they go home to return to their normal quality of life, which is good.

A third come in critically ill.

They'll receive treatment and they'll leave, but they'll leave with some long-term deficit and one third come in with multiple chronic medical issues and they never leave because they pass here.

That's the seriousness of the ICU.

And those last one third that are so sick that they have a long ICU stay filled with lots of interventions and painful procedures, they oftentimes don't receive long-term benefit from those interventions, and they pass painfully in the intensive care unit, unfortunately.

This is the hardest time to talk about end of life care, when you're already sick.

The best thing to do for you and your family is to have these hard conversations when you're feeling reasonably well at home.

The kinds of conversations you need to have with your family are what to do.

when I cannot speak for myself because I'm so sick?

How long do I want to be on mechanical ventilation or chemicals to push my heart?

Do I want CPR or not?

What are my personal wishes regarding goals of care?

(soft music) For myself personally at the end of my life or when faced with a serious medical issue, having seen what I've seen, I would say it depends on the illness that you're faced with.

If it's pneumonia, for example, it can be treated.

You should take it all the way.

You should treat it as aggressively as possible.

But when you have advanced age, you have multiple competing comorbidities, having a goals of care conversations is very important, to draw limits to how long you should be on a mechanical ventilator.

I certainly would not personally want to be on life support for more than a few days.

I think at the end of life, you want to be somewhere where you're comfortable, you're at home, you're not surrounded by strangers or loud machines, invasive, painful interventions.

You want to be at home with your family, with your own comfort, and die with dignity.

- To begin our discussion, I wanna welcome Dr.

Devjit Roy, Chief Medical Officer, Medical Information Officer, and Vice President of Medical Affairs for Nathan Littauer Hospital & Nursing Home.

Also, we're joined by Dr.

Ayesha Sooriabalan, Division Chief for the Palliative Medicine Department at Saratoga Hospital.

Thank you so much for joining us.

In New York State, we do have the lowest hospice utilization in the country.

And the flip side of that means that a lot of folks are receiving end of life care in a hospital setting, in an acute care setting.

I wonder, Dr.

Roy, what, what that says to you?

- What's tough is, as we are aging in New York, nobody really wants to talk about it, right?

And nobody wants to talk about what happens as we're getting older, as illness comes and hijacks our life.

It's not an easy conversation.

Whenever we see patients in the hospital, in the ER, or in the ICUs, we're just trying to focus on the fire in front of us.

And as we're just trying to fix things, sometimes that more complex conversation, it just takes a back burner.

- Hospitals are designed for curative care, right?

And so you're fixing problems and addressing very particular precise issues, whereas, you know, end of life care is much more complicated.

So is the hospital really even set up for the kind of care that you would want?

- In current state, absolutely not, right?

And I think that's why we're here.

I think we're trying to get better.

We're trying to help train our ER docs, our hospitalists, our ICU docs in the ways of bringing up end of life care and in the ways of bringing up complex illness.

And we are making some headway.

I think the more residents and fellows that are trained in this manner will help us to at least start the conversations.

But, like you said, people come to the ER, people come to the hospital on their worst day, when they're really, when they're really sick.

And if we can start this conversation earlier, you know, that might help.

At the same time, there's so much paperwork that's buried in healthcare that it's hard to have that conversation.

- And it's tough, you know, you are entering in a moment of crisis 'cause you don't know what to do or where to go and maybe don't know what the ramifications of those decisions are.

And you aren't set up to address the issue maybe at home or whatever.

So it is a moment of crisis, which means you go to the hospital, and in the hospital you're set up with these tools that are very specific for maybe extending life and they have their place, you know, the feeding tubes and the mechanical ventilation and those sorts of things.

But, you know, I think as Dr.

Rashid said, at a certain point, extending life is in some ways may be futile and just creates suffering.

- Absolutely.

And another challenge I've noticed is that doc or that nurse that's taking care of that patient initially, doesn't necessarily know how that trajectory is gonna go.

And so when a person, or when a family member who's gonna be helping with decisions can't, is working through uncertainty, it's hard to navigate that.

And for instance, if I say, oh yeah, let's start talking end of life.

"Wait, mom's gonna die?"

And I don't know that.

We're gonna, and then you get yourself stuck in a place where you've lost trust, right?

So it's a very difficult conversation.

- All right, so, you know, at the same time while, you know, there is the ICU and there is this super advanced curative care, there is also palliative medicine in some settings.

And, you know, we're joined by Dr.

Sooriabalan.

And before this conversation we were able to visit the ICU and also see you at work with the palliative care unit.

Let's take a quick look at that video.

(soft music) - Palliative medicine is a type of support that comes in at any stage of a serious illness, any age, any stage.

And we try to focus on the relief of suffering and also trying to talk about quality of life aspects and hone in on what goals of care are important to a patient.

Hi, I'm Dr.

Sooriabalan with palliative medicine.

- Okay.

- How are you feeling?

The goal of palliative medicine is to live as long as we can as well as we can, with as much quality of life as possible, focusing on what matters most to each individual.

- I'm glad I know now.

- Palliative medicine is really trying to look at the whole person.

There's physical, there's social aspects, sometimes there's even ethical legal aspects.

So we really try to look at all these dimensions, not just the disease itself, because they all matter when someone is facing a serious illness.

(soft music) The thing about doing inpatient palliative medicine in the hospital is we're often meeting patients in crisis.

We often get a consult when things are getting very complicated.

There's a lot of emotions.

There's a lot of difficult symptoms and big decisions that patients need to make about their life.

Often, life or death decisions too.

We have to develop rapport very quickly and go to this very deep place and sacred place, I call it, with families where we're trying to get to know them, you know, hear their story, know how they were even before this hospitalization, and then figure out, you know, what are we hoping for afterwards?

There's such a need for our community and for patients.

And I believe that, you know, it's being underutilized, but also we need to improve access because there's so many patients that we're not touching with this level of care.

(soft music) - Dr.

Sooriabalan, so you provide this specialized medicine that is complimentary to curative care in the hospital.

How familiar are people with palliative medicine when you meet them?

- So unfortunately, a lot of people misunderstand what palliative medicine is.

So, and also it's not introduced sometimes properly.

And that's something I'm working on continually with what I call the elevator speech.

I actually had to do this yesterday.

So, and it's a, you know, it's a shift in culture and understanding.

You know, I have to start the beginning of a family meeting often with really a definition of what we do.

And oftentimes I have to differentiate palliative medicine from hospice as well.

People, as we know, hospice is a care for end of life care when we're focusing purely on comfort measures.

And when I'm coming in, we're sorting through the goals, people are receiving treatment.

We're really there to go through everything, get to the bottom of what matters most for them and help navigate a difficult hospitalization.

- Right, I mean, you know, so palliative medicine, again, it happens at the same time.

It can happen at the same time.

So you aren't, you know, giving up in terms of aggressive treatment, if that's the course that you want to take.

I mean, I'm kind of curious to what is your elevator speech?

If you want to give an elevator speech.

- And it changes a little every time.

But the gist of it is, you know, I'm here with palliative medicine.

We are an extra layer of support at any phase of a serious illness.

I know that you've gone through some difficult things right now, and I'm here to gather all that information, so you can make the best decision for yourself.

- In the hospital setting, is that the place where palliative medicine should be placed?

- You know, that's a good question.

And ideally these conversations should be happening in the community, in the outpatient setting.

Unfortunately, I do understand that we are at a time where a lot of care is, you know, primary care is really just very busy and a lot of patients need, you know.- - [Will] 15 minute slots?

- 15 minute slots, and, you know, and some of this advanced care planning discussions, it's very difficult.

And I, you know, a lot of my colleagues that are in the outpatient setting, you know, talk to me about this, that I wish I had more time to dive into that difficult conversation.

But time constraints are real.

And I think that's unsatisfying too for my colleagues on the outpatient side, unfortunately.

- Here we are in this studio and in comfortable chairs.

And you know, normally when people meet you, you've got the white coat on and you know and there's a lot going on.

So in some ways it, people would benefit from having that conversation in a more comfortable setting as well, correct?

- Well, and also they know their doctor, so I think there's a trust.

- [Will] Their primary care provider.

- Correct.

Their primary care provider.

There's a trust and rapport already established and I'm coming in and they don't know me at all and they may be afraid of already what I represent.

So there is an energy you can feel right away, sometimes a nervousness or, you know, confusion or fear.

And so I definitely try to read a room and take time, sit down, and start with, like I said, explaining, but also, tell me a little bit about yourself.

How are you feeling today before we jump into anything big?

- And to be fair, you know, this is, the onus on this is not just on the patient or the family or the public, right?

These are huge infrastructure, healthcare dimensions, big changes, policy issues.

There's a lot going on here that needs to be addressed.

I'm kind of curious, both of you have actually studied palliative medicine and integrated that into your practices.

And I would love to know about, you know, what brought you to this particular line of medical care?

- Well, I actually had an interest even in my residency, however, there was no palliative medicine fellowship in the area.

So I went on to work as a hospitalist for about five years at Saratoga Hospital.

There was a practice pathway program to get board certified at the time.

So I pursued that and I was able to start the program actually 11 years ago.

So that was exciting.

And it was, you know, when I was a hospitalist, that's when I really saw the gaps and the need and the conversations, because unfortunately, it is a fragmented healthcare system and we're meeting hospitalists for shifts and sometimes those conversations don't continue in the way that they need to evolve.

And again, it's a time constraint.

The hospitalists have a lot of patients and they're doing admissions and discharges.

- What is the role of a hospitalist?

Just to clarify.

- Yes, so, you know, we're basically their primary doctor in an acute care setting.

And often, meeting the patients, you know, for a first time, their primaries, they're not coming into the hospital anymore with the model we have set up.

And, you know, again, even they have time constraints, so it is difficult.

So it was also through that need, and we went through a difficult family situation as well that was unexpected.

And being on the other side of the healthcare system and really understanding that piece of not getting sometimes all the information or the honesty that we wanted.

Understandably, even doctors wanna maintain hope and don't want to disappoint patients, but it is a disservice.

A lot of the times people, some people wanna plan and they wanna know and you wanna be at home and, you know, we were able to do that for my father-in-law and I was pregnant with our second grandchild and it was a beautiful death, as much as we didn't want him to go, and we felt that it was too early and we weren't expecting it.

And to, I'm sorry, I'm getting.

- [William] Yeah.

- But so I just, you know, that pivoted when they asked me to do palliative medicine, I said absolutely.

- No, it's a similar story, I think, for me in residency, that in residency we have to do a lot of hospital medicine.

And so that conversation was just always very awkward.

But since I was just curious and trying to get better at it, none of the other residents really wanted to do it.

And so I'm like, okay, I'll do it.

So that's how it initially started.

Then, during COVID, there weren't any other hospitalists.

So I was in a hospital downstate in Montefiore and it was one of those hospitals that kept getting wave after wave.

And so I remember in the early times I was one of those original COVID doctors and so kind of thrust into navigating very difficult conversations early.

And I had a colleague that did palliative care at that time, not in that hospital.

And he said, "Hey, listen, life gets hijacked.

All you're just trying to do is unhijack that plane and land it comfortably for the family."

And I'm like, huh, "I could do that.

I can be a pilot, I'll figure that out."

So, but that's what got me into palliative care.

- I did wanna add that, you know, since that time, we have expanded our service steadily, slowly and steadily.

We were able to, I applied for a fellowship program, which, you know, Dr.

Roy was mentioning, that is what we need to train other people in this specialty.

So we're very excited to have our first two fellows start this July.

And this is something new to the area.

So I'm hoping that that will help.

- You do provide palliative medicine in settings outside of the hospital as well.

- [Ayesha] Yes, yes.

- So I mean, talk a little bit about that.

- So once we started the inpatient service, it was a few years into this that we were realizing that some of our really complex patients, we had had all these very lengthy goals of care conversations.

We had done some complex symptom management and they were sending them out in the community.

And again, the primary care doctors with limited time, it was hard for them to maybe delve into all of this.

And even they appreciated so much that we had started some outpatient palliative medicine support.

We have a unique program where our providers are even able to go to the home.

So that has been really helpful with our home bound patients as well.

- When we're talking about end of life care specifically, 'cause again, it's such a fine line with, you know, there is a place for the ICU, there's a place for the hospital.

They do a amazing things.

And when the ICU becomes the setting for end of life care, that can become a particularly challenging issue.

And the, maybe the situations with families that could be changed, could be done better, seem to be the folk, the patients who have a lot of chronic disease, chronic illness that has grown and become exacerbated and has lots of symptoms and issues.

And so we should know that the trajectories for those things and the ability to interact with that patient and their families sooner, gives you an opportunity to actually improve quality of life and outcomes and all of those things.

I wonder if you can take, maybe describe a way that palliative medicine works best in that situation and what it can provide just so people understand the benefit that could potentially be available to them through palliative medicine.

- Yes, so, you know, if palliative medicine is able to come on earlier in a disease course, a lot of that support and fear and questions can already be tackled.

We work often with the specialists too, to make sure that we are giving the appropriate information, that we're all on the same page, and that prognosis expectations are also in alignment with what their specialists may feel, you know.

Oncology is a big piece as well.

We are starting to have some embedded, I'm starting to see some embedded oncology in palliative medicine models coming up out there.

And it is, you know, instead of calling in palliative medicine, when things are not looking good, it takes away that stigma of, you know, they're only calling us, calling them in because things aren't going the way that we hope.

But there is a lot that can happen with symptom management.

And when all the providers know one's goals, then we know what kind of conversations to continue.

- What palliative care really brings is, since we see these cases over and over again, since we, we can understand the patterns of that trajectory really well.

So for instance, if I'm hearing that a person has come into the emergency room two or three times, okay, that's a flag.

Or hey, you know, they had a stroke and now they're not eating as much.

There's different things that we can hear in the history to be able to tell, okay, how much time do we have?

And if we do have weeks, months, years, what is important to you, right?

And so sometimes we can hijack a person out of that illness story to bring them back to their life.

And because I think most of the time when we ask a person, hey, what is most important to you, they won't say, "Well, kind of want to hang out with you Dr.

Roy, in this emergency room," or, you know, in the hospital.

And then we can really start getting into it.

There is a time where taking care of a patient, all they just wanted to do was see their loved one who lived in Florida.

All right, well how do we figure that out, right?

And how can we help you to hit that goal?

So it's a lot different - Curative medicine, let's say we're, you know, you're treating somebody with cancer, you might have a very targeted aggressive medical therapy that's just targeted on that tumor and multiple medications that might have a lot of different negative side effects that might drive people into a hospital setting, whether it's nausea or pain or dizziness or whatever.

So the palliative medicine service looks more at that holistic picture, right?

Not just that tumor, but the person and looks specifically at the nausea and the symptoms management and that kind of thing, would you say that's accurate?

- Yeah, absolutely.

I think, so let's say somebody is on a chemo medication or some kind of radiation therapy and they are having nausea or difficulty eating or difficulty sleeping.

We're masters in understanding how to treat those symptoms.

But I think more importantly, we're also gonna bring that conversation back to you.

So you're taking this medication, how do we make sure that you're also doing the things that are important to you?

What events are coming up for you?

What do you want to do, right?

And just to take that focus away from that chemo drug.

I remember taking care of a patient, and I'm sure this might resonate, where, you know, they had that notebook and everything was around trying to make it to this appointment, to that appointment, to this doctor, to that doctor.

And a person's life just gets hijacked.

And so I think not only are we trying to treat the symptoms of side effects, of whether it's the illness or the medication, but we're also trying to bring them back out of the weeds to focus on what's important.

- My note will often include physical, which is the medical issues, psychological, spiritual, and, you know, ethical, legal, sometimes.

Those are things as well.

So, and social, social is a big thing, you know?

Are you living alone?

How is that going?

Do you need more care?

So, you know, and then the psychological, are we feeling depressed?

Are we feeling anxious?

So there's so many pieces that somebody's worried about financial pieces sometimes, getting affairs in order, and you know, we help with some of those things.

You know, signing a healthcare agent, formalizing their advanced directives, referring to hospital social work if needed for more navigating in that aspect.

So it is more than just their medical disease that people are worried about.

So, you know, we can help with that.

- So then how do people get connected with palliative medicine and when?

- Hopefully their physician is recognizing that this is a complex situation.

We need some specialized support.

Sometimes patients advocate for it themselves.

They've heard about it.

They've read a book, or maybe they're seeing this segment and they think, you know, you can ask your doctor is palliative medicine right tor me?

- One of the other aspects of stigma around palliative medicine, I think back to our conversation at Saratoga Hospital where you, I had said palliative care, and you're like, "You know, I like to use medicine because people don't think of us as, you know, medical specialists."

And I was like, "You know, that makes sense because we so value in curative care, the technological advancements, the scientific advancements, how much more specifically we can target things.

The reality is, is that palliative medicine is also a specialty with innovation and research and all of those things tied to it.

But it does appear that you have kind of an uphill battle when it comes to.

- Oh yes.

I mean, something that I hear sometimes is that "They're on palliative now."

And I have to correct that by saying "No, we are alongside with you."

We're a consult service in the hospital, just like any specialist.

And we are providing specialized care.

- Ever since I've started practicing in palliative medicine, the stories that we hear is truly amazing.

So I just love listening to a person's story.

I love to learn from it.

I love to grow from it.

And so I, I think that's where palliative medicine really shines.

'Cause it's bringing back that human, right?

It's bringing back that human in healthcare and so that's why I love it, but.

- No, absolutely.

And you know, I feel that also part of this is meeting people where they're at.

So you really gauge how much someone is able to talk about how far they want to go with the conversation.

And I often ask permission, also, if we're going to start to talk about some heavier things.

- Well, you know, we've explored curative and palliative medicine and now we're going to turn to hospice, which provides specialized care for people with a life expectancy of six months or less.

To provide an introduction to hospice care, we spoke to Dr.

Melissa Bakar, Chief Medical Officer for The Community Hospice.

Take a look.

(soft music) - Most people when they are surveyed want to be at home at the end of their lives.

And that's one of the things that hospice can help with.

Hospice provides care for people who are nearing end of life.

And what that means is people who have a serious illness, that we think that their prognosis is likely less than six months.

And when those people decide to focus on comfort, they are eligible for hospice care.

There is a little bit of a stigma associated with hospice care that it's like giving up, but I definitely don't see it that way.

I think of it more as a shifting of focus, right?

So while we may not be doing things like going back to the hospital or getting aggressive treatments, we're still doing things that benefit the patient and their family.

And we're still really focused on providing care to that patient and the family through all of those things like the symptom management and the emotional support and the spiritual supports that we have.

I think New Yorkers are often seeking the most advanced care, the newest developments, and wanna really try everything.

And I think there's a misconception that hospice doesn't provide that.

But, you know, we are also doing research in hospice.

We provide advanced care, very specific, you know, symptom management care, and we provide the opportunity to really focus on what your goals are.

And in hospice we often find that people's goals lead to us focusing on the quality of the time they have left, rather than the quantity of time they have left.

For patients on hospice and their family members, they have the whole hospice team there to guide them through what their journey to end of life looks like.

And our staff are experts in knowing where people are on that progression to end of life.

They provide a lot of education to patients and families on, you know, what changes might happen as patients get closer to end of life.

And they provide a lot of education to families on how best to take care of the patients and how best to help the patients as they go through those different stages.

(soft music) - To further help us understand the services and resources available through hospice care are Cylon George Chaplain with The Community Hospice, and Mike Kaminski, president and CEO of Hudson Valley Hospice and the Hudson Valley Hospice Foundation.

Thank you both for joining us.

Dr.

Bakar mentioned a little bit of stigma, right, around hospice.

How do you try to help people understand the benefits that can be provided through hospice care?

- That's probably one of the toughest things we're faced with, is approaching patients who really don't understand the fact that they may be dying because nobody has, if they're in the hospital, has mentioned that to them yet.

We do a lot with communicating to hospital staffs as well as nursing home staffs to try to familiarize them with the benefits of hospice and how we can help their patients and their families, sooner rather than later.

And I think Dr.

Roy mentioned that the stigma of any discussion relative to death is something that turns, obviously turns people off and makes it very difficult to begin to talk about the benefits of what is a wonderful program created about almost 50 years ago now to help patients in their final days.

The mission of, I think, almost all hospices are to provide comfort and freedom from anxiety and pain in the final days of a patient.

That makes it so much easier for somebody like myself to, in the management role of an agency, to have every one of our staff understand that we're a mission-driven organization, not like in hospitals where there may be a variety of missions and the ability for our staff to communicate that well in terms of providing comfort through the presence of the staff member is, is something that we look forward to every day.

- Yeah, and, you know, I think about, you know, we started this conversation in the ICU and in the hospital setting, because in New York where I think the data that I last look at with Medicare, you know, folks is 29% of New Yorkers or folks in New York State receive hospice in the end of life.

Now the national average is more like 53%, and the top number, Utah I think has 68%.

So 29% is just a really small number of folks utilizing hospice.

Again, worst in the country.

And because we're so focused on the hospital care, I assume that means you are getting folks still in a moment of crisis and late in their trajectory when they're entering potentially hospice, maybe caught off guard and unprepared.

- I need to address one thing.

We're very proud of the fact that the Hudson Valley Hospice takes care of about 60% of Medicare patients in the counties of Duchess and Ulster.

And I think we do it principally because of what I said before, our staff all understand what the mission of hospice is, and they are constantly doing things for patients and families that are unexpected.

You know, I constantly get emails and letters from families saying that they're sorry that they couldn't, they didn't approach us sooner.

Our average daily census is about 650 patients, and of those, most of them are only on for about 20 days on average.

And we really would need to get to the point where there is less fear relative to a discussion about end of life and hospice and palliative care services, so that we can provide them with all the benefits that they're entitled to.

- Let's talk kind of broadly about those benefits because it's not just hospice medicine, which might be symptom management or pain management, you know, really specific care.

It's also a host of other services.

And Cylon George, you're a chaplain with The Community Hospice.

Talk a little bit about sort of the collective service that folks can access through hospice care.

- Absolutely.

You know, so hospice is a very holistic service.

And I think part of the education, as people come on our program, you mentioned sometimes they're caught off guard and they're coming to our program in crisis.

So still trying to wrap the heads around the fact that they are on hospice.

So a lot of our role, in addition to the nurses, the doctors, the chaplains, the social workers, you know, we have other complimentary type therapies in terms of massage therapy, volunteers, music therapy.

So we have a whole host of things to help people grapple with their feelings, with their fears, as they're coming on hospice.

Particularly for the chaplain role, and I think this is something that is often a barrier for chaplains getting into, so my role as a home care hospice chaplain, I'm working with people at home, a very intimate setting.

I think there is a lot of resistance to welcoming a chaplain because there is a sense that is a religious person, a pastor that is coming to maybe try to convert them.

And that is the furthest thing from the truth.

So, you know, chaplains are there to accompany, as with all of our other therapies and folks that work with us.

We are accompanying a person and their families through the end of life journey.

And it's really helping them to draw on their own strengths, draw on whatever is meaning making for them, really helping to help them utilize that as they walk this very difficult journey.

You mentioned fears.

You know, there are a lot of fears, and look, having these emotions are, it's part of what it means to be human.

So in a way, we can't suppress those fears.

We can't not have them, but how can we still have them and be able to still walk this journey?

And I think a big part of what we all do is to help each other.

We're helping each other.

The other thing that I think about is, you know, we're not othering people because we're all on this journey.

We will all die.

And so being open with people building.

We are building rapport.

It's a big part of what we do.

- There are choices, there are options for how we choose to die.

There are, you know, these benefits and resources through hospice that can provide people in some ways the kind of death that they say they want.

We're just not set up as a society or a culture or with a healthcare, to help people understand that path, I guess, in some way.

I have even trouble understanding, you know, when I heard that New York was 50th in the nation, I'm like, well, why?

You know, we have the best healthcare system maybe in the world in some cases.

We have these very advanced, you know, sites.

There's other places that are dealing with rural issues.

They were maybe doing better in hospice utilization than we are.

You know, picking apart this, it's challenging.

- I think the whole hospice industry, so to speak, in New York state is troubled by that statistic.

And there really, as far as I know, there's not one specific answer to it.

There's a whole constellation of issues that come to bear on why we're not doing as well as as many other states.

One of the things I wanted to address that, that Cylon talked about is the number of programs that hospices are able to present to patients and families during that final journey are so broad that it's difficult to communicate that to people until they're on hospice.

And even then, you know, I've been told many times by families that, within the first week of a patient being on hospice, there might be 10 different visits from 10 different specialists and, you know, clinicians to visit.

And it's almost overwhelming, which we obviously have to do something about as well, but it's difficult to run ads to explain to people, you know, everything that we're able to provide because a lot of people don't want to, once they see that it's hospice and we're gonna talk about the final journey, they don't really wanna, they don't wanna know, unfortunately.

- Maybe that idea of giving up is also this abandoning of hope that something's gonna change.

And, you know, you mentioned this is an inevitable process.

- [Mike] Right.

- It is a journey we will all go through.

- Yeah.

So the conversation needs to be, the hope is really to provide the best quality of life for you, for that which you are left with.

But again, that enters into, what do you mean?

That I'm left with, the final journey, but I'm not dying.

- It's you're walking people through, I think like what you said, you're walking people through that grieving process.

You know, there is maybe, you know, feeling like I'm going to have to change my notion of what hope looks like.

- [Mike] Yeah.

- Feeling like I'm gonna have to accept this.

But if you have the time to be able to do that, then you get to have these really meaningful conversations.

- [Mike] Yes, exactly right.

- That's exactly right.

You know, for people who come on hospice, I would say earlier, as you mentioned, oftentimes we have people coming on and maybe in a way, and I will say, frankly, I was surprised to learn that we are 50th in the nation.

It's not something I even ever thought of.

But as Dr.

Bakar, I think mentioned, I think people in New York know that there are so many options, advanced options.

So I think that in a way almost plays against us in terms of being able to help people, you know, make that shift.

So I think that's a part of it, you know.

And then also I think if we're able to help people reframe what hope means, what giving up means, kind of reframe the idea that, you know, this is not giving up.

It's a shift of focus, as Dr.

Bakar, I think, mentioned a shift of focus of, again, what is most important to me.

So at a certain stage of my life, these things were important to me.

At this stage, it's not giving up, it's just refocusing.

This is most important to me.

And yeah, so I think if we're allowed, if we have the benefit and the privilege of having somebody come on our program early enough, we have time.

And oftentimes these, and again, because I'm in home care, it is a privilege to be able to build rapport in someone's home where they're already comfortable.

And sometimes it takes a few weeks to help people really move from that mindset of emergency, you know, of overwhelm, to really settling into this new phase of life.

And it does take time.

It takes maybe a few conversations for people to actually trust me, to trust us, to then have the deeper meaning conversations.

So it doesn't happen right away.

And sometimes I think that's what we miss out on when we wait too long.

Of course, if we have folks coming on late, we do our best to help them at that moment.

But I really wish and I hope that through these efforts that maybe more people might consider ways to help themselves be more at peace at the end of life.

- And maybe that's by asking, you know, their healthcare providers, like how do you get access to hospice?

How do you become eligible for it, I suppose.

- It's not a simple answer.

You know, when I first started at hospice, I had meetings with a number of the hospitals that we have contracts with who wanted us to tell them what it is that makes a patient eligible for hospice.

And the chief medical officer that was with me refused to do that because you can't.

You have to, each patient is an individual with individual conditions and symptoms that have to be looked at as an individual, not as some, you know, a case book or a textbook that says, with this then that.

- So, you know, I'm thinking back to our previous segment where you've got this curative care and you've got palliative care and those can happen at the same time.

Palliative care being focused on comfort and quality of life, but not necessarily with the reality your end of life care.

Palliative care is not end of life care, hospice is end of life care.

It's meant to help you during that time.

And that shift to hospice does mean that you're typically giving up a curative form of treatment and you're focusing specifically on quality of life.

I know from, you know, personal experience that I've seen friends who have gone onto hospice and their quality of life has improved so much that because, you know, because of removing, you know, winnowing down some of those medications they're on, focusing on treating those side effects, they actually went back off of hospice and went back on and off for a period of like two years.

- Yes.

- So I mean, you know, that's, you know, in some cases, you know, when it is early and appropriate, you may improve someone's quality of life to a point where they, you know, they graduate from the service without passing.

- We've had patients on for years and we've had patients that are on for six or eight months and are discharged and then come back on in another year.

And there are a number of hospices that have complex care programs where they're able to provide treatments that would ordinarily be considered curative, but because of the nature of the condition of the patient, can be considered palliative, you know, a temporary type of thing, that the hospice has to pay for itself.

So, and most patients would not know that until they're on, unfortunately, until they're on hospice.

- Well, and you know, if you have a really challenging health diagnosis and you know that at some point you're either, you're going to die because of this, you know?

I have also seen where hospice, you know, has this very unique expertise in the trajectory of end of life and in understanding what those processes are and where people are on it.

And so sometimes that communication between the hospice staff and the family or the patient, can help them understand where they are and provide in some ways a great sense of relief just because the unknown is also so stressful.

- Right.

- Is that something, I guess, that you've seen in your experience?

- Absolutely.

Education is a huge part of what we do.

We cannot make anyone do anything, obviously.

And so the best we can do is to educate families, the patients and their families.

The families are very important.

Because families in many ways make their care possible, especially in the home setting.

Because hospice at home doesn't mean that hospice is 24/7 in the home.

It's really the family and other caregivers that are primary in that role.

And hospice is supporting them as they do their work and learn how to take care of their family members.

So education is a big, is a huge piece of what we do.

And as you mentioned, I think correctly with education can come a feeling of empowerment, of feeling, a sense of understanding of what might come and maybe a little bit of, I don't wanna say control, but just a little bit of just a sense of navigating the space in a way that feels, you know, you've had the ground pulled out from under you and there is just no sense, you know, most of us haven't, you know, we only have one dying process, so there is no guidebook, you know, there is no, you know, and as you mentioned.

- No do-overs for this.

- Correct, there are no do-overs.

And we are each in individuals on our journey.

So as you mentioned, so each journey is different.

And so, you know, so we walk alongside, we educate.

It's very tailored to that person's situation.

There isn't no grand checklist that we, okay, after X happens, Y happens.

It's very in individualized.

And we each do individualized care plans to help meet the needs of the patients.

- In a way you're helping people prepare, right?

You're doing this advanced care planning in a way.

Maybe you're helping them get their documents all set up, you're helping understand what their goals and wishes are.

You're helping to mitigate the need to go back to the hospital perhaps.

- [Mike] Yeah.

- So talk through that specific process and what are the things that people need to know and to do in order to prepare and have the kind of death that they say, that the patient, the family says they want.

- Advanced care planning is obviously very important to explain to families that you really do need to think about healthcare proxies, you know, a MOLST.

- Describe what a MOLST is.

New York State Department of Health document, correct?

- Yeah, medical orders for life sustaining treatment where the patient, with the help of a physician, generally, 'cause a physician has to sign it, explains in writing what types of treatments they don't want at the end stages of their life and what they do want.

So it helps a healthcare proxy.

That person that a patient has selected to make decisions for them, it helps the healthcare, it relieves the healthcare proxy of having to think that the decision that they're gonna make may not be the right decision for the patient.

And then these feelings of guilt, you know, are introduced later on without having a MOLST or a directive on, you know, what the patient wants in later life.

And none of 'em require a lawyer.

They're all forms that are available online through either the New York State Department of Health or other areas.

There's a program called the Conversation Project, which helps patients and families ask questions and give a variety of types of answers to those questions.

Or at least makes you think about what the kind of answer I would be putting on in those kind of forms.

- What kind of guidance do you give people in helping them understand the utility of these forms?

When do you need these forms?

How often do you change them?

You know, those sorts of things.

- Generally, I think once those forms are filled, then you carry on with the care.

But sometimes, yeah, things change and people may adjust.

I think what I often see is maybe a patient coming on full code, which means if they are, you know, in an emergency, they do want something done to them to help them remain, stay alive.

I think it might be some surprising to some folks to know that those people can come on hospice, they are allowed to be on hospice.

- Right.

And so maybe part of the conversation as things go along, as they receive more education, that perhaps they might want to shift to DNR because of how some of these measures can actually cause more harm, especially for a fragile body.

I think there's not much understanding broadly what these things can mean.

But again, at the end of the day, it's that person's right.

So, you know, so we do, but we do see mostly that once the MOLST form is done and so on, you know, it just carries through to the end of hospice care.

- It makes it a lot easier for the staff in a hospital to understand what a patient wants.

Patient goes into the emergency room, has a form, it makes it easier for the staff to know exactly what's going on with that patient.

- Often in the beginning process, one of the great services that our social workers can provide is helping families navigate through the paperwork, understanding what it means, again, educating them so that they can work through these forms and documents.

It's the first time that they're thinking about this in any meaningful way, and it's all jarring with everything else that they're facing.

- [Mike] Right, yeah.

- In this conversation where we're talking about how to plan for the kind of quality of life that you want at the end of life and the kind of death that you want, and being able to make that possible, a crucial part of that is filling out those advanced directives, that MOLST form for the state of New York, you know, having perhaps a living will.

Those sorts of things.

That preparation can happen anytime.

- [Mike] Absolutely.

- You know, and I'll admit even for myself, like, I worked on issues around end of life for a while.

Never had the forms filled out.

And then eventually I was like, what am I doing?

Like I need to do this for myself as well.

- Right, and they're so easy to do.

- Yeah.

- Relatively easy.

- So, I mean so that's something that someone can do before they have a chronic illness or before they're in a state of crisis.

So really anybody watching this program, there's nothing holding you back from at least open the door, take a look at those documents, and think about what it is that you want.

Open up that conversation.

When you have someone who has had those end of life conversations, is prepared, what is that experience like?

- I mean, as you asked the question, I immediately thought of a patient I had many years ago, well, maybe not many.

I've been doing this eight years and early on in my role as a chaplain, I remember meeting someone who, you know, they actually worked in end of life.

And so I think they had the benefit, which I don't think is always true, of internalizing what they were teaching others.

And so I remember this person had a detailed plan about how they wanted their end of life to be.

And it seemed to me like they were very detailed, even down to the music that they wanted playing in the background, who they wanted in the room with them, who they wanted to be by their side.

And I had visited this person a few times, and then sure enough, as they were dying, I visited and the plan was being put into action.

So they let their family know, this is what I want.

And so I came and sure enough, the music was playing and they were very peaceful.

And that experience has stayed with me as to what can happen when you're very intentional and thoughtful.

Again, I'll be the first to say I am very humble about that.

I don't know if I could be that thoughtful, but I do wish that for myself.

But that's what's possible.

- I was just gonna say that a lot of hospices have end of life doulas.

- [Cylon] Yes.

- That do that type of thing.

- [Cylon] Yes, yes.

Create legacy situations with the patient to be able to describe, earlier on, what the environment that they'd like to have when they're dying and whether or not music is part of it, etcetera.

- Well, and, you know, for that person who has planned and been able to put in place what they wanted at the end of life, I, you know, I hope that that gave them the piece that they wanted.

But what also was the impact on the family?

- I think, similarly, I think that piece rippled out to the family because the family didn't have to wrestle with the decisions of what do we do?

What do we say?

Who do we want to visit them when they're dying?

And when people are in the last stages of life, I think, you know, we haven't been well served by the movies and, you know, oftentimes a person is not able to communicate.

They're not able to speak for themselves.

They may be able to hear.

So they may be able to actually hear what is going on around them, but they're not able to speak.

So families can be very distraught as to, we don't know what to do.

So I think having a plan, and then even beyond that, you know, what the plan might be after the person dies, whether they want a funeral, whether they want to be cremated, whether they want a celebration of life or not.

You know, just knowing these things, it's one of the best things that a person can do for their loved ones because it removes that burden of having to make all the decisions when they already feel burdened, they already feel guilty, can feel guilty, not necessarily, but can feel some level of guilt that they're not providing the best care.

I think it can be hugely beneficial for family members.

- I wanna thank you very much for being a part of this conversation and to learn more and share this program with someone you know, visit our website, wmht.org/agingtogether.

And thank you for watching.

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