Mrs. Chaya Lasson; No Regrets Left in the Room

No Regrets Left in the Room

Mrs. Chaya Lasson didn’t set out to become a voice for end-of-life care. But somewhere along the way, she stepped into a role she came to deeply love — director of Bridges Palliative Care.

In many frum circles, the word hospice carries weight. It feels final. Frightening. Almost like surrender.

But Chaya gently challenges that perception.

Hospice, she explains, is not about giving up. It’s about comfort. About dignity. About bringing medical expertise into a moment when suffering can be eased. And often, when a patient becomes more comfortable, something shifts. Strength returns. Sometimes even enough to resume curative treatment.

Her work isn’t only medical.

It’s legacy work.

She guides families through difficult conversations — not only about pain and comfort, but about the practical realities we tend to avoid: DNRs, advance directives, medical power of attorney, wills. Conversations that feel overwhelming. Or even frightening.

Not morbid — but real.

So that when the time comes, there are fewer unspoken words. Fewer rushed decisions. And fewer regrets left sitting in the room.

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Questions or feedback? Email me at: podcast@mayrim.org

Transcript

Welcome & Mission Of Mayrim

SPEAKER_00 0:01

Welcome to the Grief Journey Podcast, hosted by Mrs. Miriam Ribiat and brought to you by Mayrim. Mayrim is an organization dedicated to supporting families who have experienced the loss of a child. It was founded with Eloy Mitchmas, Nahamaliba, and Miriam Holman. Despite her illness, Miriam devoted herself to addressing the needs of parents and siblings, navigating the profound pain of child loss. This mission was deeply personal to her, as she had experienced such loss firsthand when her older sister Nohamaliba passed away. Mirim continues to honor and expand upon the work Miriam began, with her parents carrying this mission forward with unwavering dedication. If you have any questions or comments for the speaker, or if you would like to suggest a guest for the podcast, please email us at podcast at mahrim.org.

Guest Intro: Jewish Hospice Director

SPEAKER_02 0:58

Hi everybody. Thank you so much for joining the Grief Journey Podcast by Mayrim. Today, I would love to introduce to you, Mrs. Kaya Lastin, who is the director of Bridging Lives, which is the Jewish Hospice and Palliative Care. Did I say that right?

SPEAKER_01 1:16

You got it. Bridging Life, Jewish Hospice and Palliative Care.

SPEAKER_03 1:20

Right. Okay.

SPEAKER_01 1:21

Well, thank you so, so much for coming on. Pleasure. Thanks for having me.

SPEAKER_02 1:26

Okay. So why don't we start a little bit with your role as the head of as the head of hospice and what your job involves on a day-to-day basis?

SPEAKER_01 1:35

Okay, great. Well, thank you so much for even raising this topic and giving us the space to really dispel myths. I think hospice is a dirty word in the firm community. Often it's associated with hastening death. And I don't think often people even understand what hospice is. So, what are your thoughts about starting out with just defining what is hospice?

SPEAKER_02 1:56

My thoughts are perfect. When we spoke and I mentioned to you that my sister was, you know, very sick and she would not go, she would not do hospice care because they made you stop chemo. And she was like, Nope, I am not stopping chemo. So she never ended up going out to hospice. And when I told this to you, we're like, oh, that's so sad. I feel so like sad for her. So I'm really interested in you know your thoughts and what hospice does do that help.

Eligibility, Myths, And Insurance Rules

SPEAKER_01 2:20

First of all, I'm so sorry for your loss, and I'm so sad that your family had to go through that pain and suffering and loss. I think perhaps you misunderstood what I said. I might have said, I'm so sorry she didn't get to have the end of life being supported with hospice care. But I want to be very clear, a person who is continuing with curative treatment, such as chemo, which is curative, if the doctors think the chemo will be helpful, of course a person should continue with curative treatment. And then that's not what hospice is. So that's why it shows me that we need to start from the beginning. Okay, so let me share. Hospice is a benefit from CMS that is completely free, that is covering a person's disease if two physicians will say they would not be surprised with this person's terminal illness, not just a serious illness, a terminal illness, they wouldn't be surprised if they wouldn't be alive in six months or less. Does that mean that everyone in hospice dies in six months? Not at all. People stay on hospice and then they get recertified, they stay on hospice again, and sometimes they come off. So, for example, if you have someone who has cancer and they've been on therapies and all kinds of immunotherapies and chemo and radiation, and at a certain point the oncologist says, at this point, there's nothing else right now that would be helpful for you in your body, in the state it's in. We have nothing else to offer right now curatively. So then they might say, Why don't we look into palliative care? Why don't we look into hospice? So let's pause and just just define what's the difference between hospice and what's the difference for palliative care. And then we're going to come back to discuss the scenario of this patient, okay? When and why and if it would be appropriate, according to Halacha, to pivot. Hospice, like we said, is if a person two physicians again, so it can't be one biased physician. It has to be two different physicians that say they wouldn't be surprised if this disease continued in its normal trajectory that this person would die from their illness. Palliative care is comfort care, just like hospice care is hus is comfort and supportive care. Palliative care is when a person gets a serious, has a serious illness, they get a diagnosis, and they may continue on with their curative therapies, but the hospice comes in, not hospice, excuse me, the palliative care team comes in as an extra layer of support to support the oncology. Perhaps the person is feeling very nauseous, they're feeling depressed, they're feeling anxious, they're having all kinds of side effects from the medications that hopefully are going to cure them. Palliative comes to help keep them comfortable. So all hospice care is palliative care. Not all palliative care is hospice. Any questions? So is there more Yeah.

SPEAKER_02 5:10

No, I I get that, but does that mean there's there's more things that not really more, I guess different things that hospice does to make a dying patient comfortable?

What Hospice Provides For Families

Halacha, The Family’s Rav, And Care Plans

SPEAKER_01 5:20

Okay, so let's back up. So let's say we have this patient who was already diagnosed with a serious illness. Let's pick cancer, that's a very common one, but not the only one. Hospice is not just for patients who have cancer diagnosis. They might have congestive heart failure, might have COPD, pulmonary disease, end of life sometimes with Alzheimer's, but not Alzheimer's is not a diagnosis that automatically makes someone be eligible for hospice. So let's say a person has a cancer diagnosis and they are no longer continuing with treatment because the physician says there's nothing else at this point that would be helpful. Perhaps they are too sick to actually be able to take in the chemo, the radiation, they're not able right now. So hospice care helps the family number one. They don't just help the patient, they help the caregiver, they bring in any durable medical equipment covered completely. So a bed, a hoyer lift, if they need a bedside commode, the team is a nurse, a social worker, a hospice aide can come in with bathing two or three times a week. There's a pharmacist on the team. Every week, the physician, the chaplain, the volunteers, we have a PT on our team. The team meets once a week to discuss every single patient. So it's not just one nurse or one doctor deciding what's the plan of care. And the patient, it's everything's very patient-centered. So if a person is a from Jew, because today that's what we're talking, you know, following Halacha, following their rev, their ruv can be part of this team, guiding the team. The physician, we really pride ourselves that our clinician speaks directly to the rov. We intentionally do not have a rub because every family has their own ruv, and often families have multiple rub on them, which creates tremendous tension and problems. And so when they come onto our hospice, something very important that we discuss before they get admitted is who is your family's rov? Who's the patient's ruv? Who's going to be guiding the decisions? Whoever the healthcare decision maker, it's not always the patient. Sometimes it's a spouse, sometimes it's a child. Whoever is the healthcare decision maker or makers, who is the one ruv in your personal life? You can have many rabbanim. You have eight children, they can everyone can have their own rub. But for the purpose of directing care, we need to have one rub guiding the hallachic parameters. Recently we had this this is not an anomaly. I mean, this happens often where you have someone come on hospice and then they revoke, meaning they get better enough that their doctor says, You're doing great, actually. You know, since we stopped the chemo, you're doing so much better. Why don't we try? There's this trial, or this is this new chemo, or this new radiation that we want to try. And they can revoke the hospice benefit because you cannot double dip and have your insurance and hospice at the same time. I don't want to say never, because there are some insurances actually, and I'm not an insurance expert, that actually let you do concurrent care, and that's what would be called like double dipping, you know, have hospice benefit and continue with treatment.

SPEAKER_02 8:26

I didn't realize it was an insurance thing.

SPEAKER_01 8:27

I always thought it was a hospice thing that they didn't let hospice is insurance, hospice is Medicare, it's CMS, it's Center for Medicare and Medicaid, it's all the regulations are guided by a central agency, it's not made up, you know, this hospice, that hospice. Within each hospice, there's latitude. Some hospices will say, Oh, we're not doing that, that costs too much money and we don't see any benefit. We at Bridging Life, because we have a halachic pathway, because we recognize that what's most important is for a family to follow the halacha that they built their life and they live their life by. We uh often have patients with hydration and nutrition, oxygen. Even for example, I just want to take another moment to share this with you. Like if a person would have a tumor, for example, and it's causing distress and causing pressure on their lungs and it's difficult to breathe, that's an example of where a person could continue with radiation while in hospice. Because that's not curative, that is comfort. You hear the difference?

SPEAKER_02 9:27

So isn't that palliative?

SPEAKER_01 9:28

Oh no, because you're palliative, it is because again, all hospice care is palliative. Okay, all hospice care is palliative care. Palliative means comfort. So, yes, it's a palliative care, it's a palliative intervention. Absolutely.

SPEAKER_02 9:43

I'm just curious, if the tumor is pressing on their lungs, like what could hospice do for that?

Revoking Hospice And Concurrent Care Nuances

SPEAKER_01 9:48

Well, if you I'm explaining to you that if a person can continue with palliative radiation to shrink the tumor a little bit to help them breathe better, it's a temporary fix. It's not going to cure their cancer, it's just to help them become more comfortable. What will hospice do? Hospice will set up medications to help them be more comfortable, help them breathe better. Maybe they need respiratory support, oxygen support, maybe it's pain medication to manage the pain. Symptom management is a big piece of hospice. So, in my role, to go back to your first question, I don't actually work clinically. Everything that I just set this stage is just to help you understand because there are so many myths around hospice. It seems like the word on the block is hospice is hastening death and no treatment. So it's correct to say it's no curative treatment, but there's a lot of treatment going on, symptom and pain management. And in my role, I work internally supporting our teams. All of the people that I told you are part of the hospice team. I educate them all about caring for Jewish customs at end of life. I teach them about Chavez, I teach them about um our Yamun Tovim, I help them understand what we built our life around, our values. We learn about medical, Jewish medical ethics, withdrawing treatment, withholding treatment, and I teach them all about the end of life, you know, period. And they never become experts. It just helps them be aware and be culturally sensitive so that when they care for a patient, they can say, Hi, Mrs. Kone, I see that you're an orthodox patient. What would be helpful for me and my colleagues to know as we care for you and your family? So that's internal. Internally, I do all the education with the physicians. Bedside, sometimes I get called from doctors to go bedside, and sometimes I just speak with the son in Lakewood, or I speak with the husband, or I meet them at a coffee shop here. It's not always bedside. Sometimes I go see the patient myself, and the family members not there. Often it's not the right place to have the conversation, right sitting in front of the patient. You know, first we might want to have a conversation on the phone, we meet in person, then sometimes we go bedside, sometimes I do that concurrently on my own. And um, that's the internal piece, really training all of the staff and even the hospitalists in the hospital about cultural considerations when caring for orthodox Jewish patients. And together I put together a really wonderful uh cheat sheet, if you will, for the physicians. It's specifically guided for physicians and and recognizing that that is a different, you know, a different aspect of the thing. Very. I have found that in general, people just don't know. We our way of life, we we can't expect anyone to understand. And even when they care for multiple firm patients, because we are all following the way our rov pass, it's often not the same. You'll have one rub, say with one patient, you don't need to put a feeding tube in. Why? Because that patient didn't want the feeding tube, and the halakha is rendered. I'm learning so much, the details matter. You could have another patient with the same situation and the same rub. And the rub says, of course you need to put a feeding tube in, because that patient's like, I want to do everything. So it's very, very case specific and very all our care is personalized. So that's internal, that's internal, and then a very big piece on my job, very big piece, equally as important, is external. And what do I mean by that? I'm out in the community doing programming, liaising with Rabanim, programming in the JCC, in our shuls, talking about having courageous conversations, having the conversation about what's most important, filling out advanced care directives. So in the event the patient, your loved one cannot speak for themselves. When we go ask a shylah, the family needs to know what that patient even wants. Um, I do a lot of speaking, a lot of programs, bringing in speakers, and really facilitating a space to become comfortable where most people are uncomfortable.

SPEAKER_02 13:59

Are you like, do you work together with Rabbi Zoom and I just fairy thingy?

SPEAKER_01 14:04

So I have in the past. We've done that together over the years that I've been doing this. We did, you know, one year, two years I worked with him. He came to Baltimore once. We did a big every shoal spoke that Sunday morning. I think we did something, filling out advanced care directives in one shool, one motif as I did that same weekend. I did it another shoal, probably did a different event like the Thursday before. In recent years, we have not, but definitely that's a really great opportunity.

SPEAKER_02 14:30

Right. I I mean, I guess I asked because it sounded like the same thing.

SPEAKER_01 14:34

So basically, opportunity to have the conversation. I'm doing this 12 months a year, not just Barshasvati.

SPEAKER_02 14:39

Right.

Symptom Relief, Palliative Radiation, Comfort

SPEAKER_01 14:40

Every every day, every week, every hour, wherever I go, every meeting, every klasana, every time I'm in shul, you know, just being able to for people to ask questions and also help them listen and help make sure they understand what they're being told. Make sure they understand what the physicians are sharing with them and kind of learn what the questions are that we need to be asking. And I can't I cannot emphasize enough the importance and the value of having the Rav who is going to be guiding the family be directly in touch with one of the care team. And by that I mean not me, not the wife, not the daughter. In addition, that's fine. We're not trying to do anything to exclude anyone, they could be part of the conversation. But you know, remember the game broken telephone?

SPEAKER_03 15:35

Of course.

SPEAKER_01 15:36

That's what happens when the rub speaks to the patient's daughter, and then the daughter comes back and tells her brother, and then they speak to the doctor, and then when they give the information to the doctor, the rabbi said we can't do this. The rabbi just said we can't do something else based on what you gave him that information.

SPEAKER_02 15:55

Right.

SPEAKER_01 15:55

And that happens. And so sometimes I say, Okay, maybe we should. Is it okay if we call the Rav back? Let's just call back and clarify. Just want to make sure all the details were shared. And sometimes the rub says no today or yes today. And tomorrow is a completely different clinical situation. So times, you know, Hashem's the master of timing. And yes, today might be yes, today do not sign a DNR. DNR stands for do not resuscitate. Today it's not appropriate halachically. But often hours later, you know, days later, the situation changes. So it's not like the rough said don't sign it forever. The rough said today don't sign it. Based on what you're sharing with me, I don't think we're at that place that that would be halachically acceptable or appropriate.

SPEAKER_02 16:42

Do you do you deal with families also that are have young children that are sick?

SPEAKER_01 16:47

Yes. So when you ask about that, the first one that comes to mind is a very dear friend, neighbor, patient who passed away last his pastor, Khodash Thomas, was her yartite. So a year and a half ago. Beautiful woman who was diagnosed with cancer. She had many, many children, blessed with a beautiful big family. I think at the time of her patira, they ranged probably from four to like 16, but maybe she was diagnosed when the baby was two. Might be off a little bit, but just to get the scope of teenagers and all the way down to toddler, right? And um, and fought heroically and did every type of treatment that was available. And the beauty of her, when I think of her, and I think of what a Gibbora she was, what a strong woman, was because she faced her illness with strength and honesty and vulnerability. And when the hospice team came in to care for her, she had done incredible legacy work. So while she was feeling well enough in between the treatments, she took each child away on a vacation, personalized for them one-on-one, created those memories and pictures, went to Aretistral, one to our baseball, lots of baseball games, one to amusement park, you know, fill in the blanks.

SPEAKER_02 18:08

But while she was doing it, she didn't tell them, Oh, I'm dying soon, so let's go have a nice time together.

Cultural Training For Clinicians

SPEAKER_01 18:13

They knew she was sick. They knew she was sick, she was going for treatments, she was gone, she was sick in between, but when she would feel better, she didn't wait until she was so sick that she couldn't even go out. But I want to tell you, even after she was admitted to hospice, she was still driving carpal. Because that was the last thing she held on to, to just be a mommy, to get in the car until she couldn't anymore. But just a simple gesture of driving carpal is such a an act of chesed and love for our families. So next time all of you are driving carpal, although you're in New York, you probably have free busing. But if it any out-of-town people that we drive carpo, just think how fortunate we are to be have a carpal to drive, that we have a car to drive, that we're healthy enough to drive, that our children are there. We have children, they go to Yudisha schools, right? And she was a paradigm for me of uh Amuna and and kept living and kept living while she was dying. She wasn't waiting around to die, she kept living, and even at the end, writing letters to the children and the support. This is an example I want to just take a moment to pause and share, where hospice came in and helped her get better. Now she didn't get better, unfortunately. She passed away from her disease. But when she was in so much pain, the first day we spoke with them, before she was even admitted, we called the doctor, the medical director. It was an Arof Shabbos. He was able to change her medicine combination, Aref Shabbas, and get her the right medicine so that subsequently, a few days later, I don't remember if it was on Tuesday or Wednesday of the following week, she was strong enough to get in the car for the last time with her family and go to a Khasana out of town for her niece or nephew, get dressed, everyone get dressed up, and their mother came. And then she stayed on hospice for you know, it was about from Pesach till Rosh Khorashtama. So do the time. We like when we say the word like, we ideally would love if our hospice patients would come on and get care for six months. They get four months, eight months sometimes. What feels really um difficult for us is when we get patients in the last few days of their life and we are there to support them however we can. But it's almost like you're missing out on the benefit of the hospice services. You're missing out on the months and the weeks and the days of helping you live.

SPEAKER_02 20:46

I guess that's what you when we s again when we spoke last time when you said that, you know, living while dying.

SPEAKER_01 20:54

Yeah. Living until you die.

SPEAKER_02 20:56

Oh, living until you die.

Community Education And Advance Directives

SPEAKER_01 20:57

As opposed to like, you know, a person thinks I'm on hospice, she's dying. Right? I have a terminal illness, they're dying. We're all dying, my friends. We're all dying, right? Hashem, the greatest gift Hashem gave us is our mortality. Right? That we we have a finite amount of time that we have to every day be the best we can and do our best. Can you imagine if as a joke, we had an infinite amount of days and years? Like what would your basement look like? What would your garage look like? Would you ever clean it out? No. I'll do it in a thousand years, right? Right. So Hashem gave us the gift of life, and with it is our mortality. And it's a very Jewish concept. Unfortunately, we shy away from it as halachically observant Jews. Uh, but I wouldn't just put ourselves in a bucket because all Jewish people I found are like this. You don't need to be really observant. We're fighters, it's in our DNA, and that makes sense, and that's why there's tension. We are fighters and we believe in miracles, and miracles happen. And so there it makes sense that there's tension. So I always Say we need to plan a plan A and a plan B. You choose where your miracle is. If it's your plan A, Ashracha. If it's your plan B, you're more realistic. But either way, your miracle should be right there. We believe in Tvila. We believe, you know. And I also, from years of doing this work, so much Hakobarosh, you know, everything's in our head. So often when a person has really good support, they can fight longer. They can they can have the wherewithal to keep living. And it doesn't mean they're continuing with curative treatment. Often they've they're not doing any more curative treatment because right now there's nothing that's available that would be helpful. But they still live. Often, especially cancer patients, many times will live longer and more comfortable once they stop their chemo because the chemo is toxic. Now, obviously, a person should use the chemotherapy. If it cures them, it's worth all the toxicity. But then becomes a certain point, that becomes the tipping point. When when are the physicians saying at this point, are the benefits versus the burden? That's a term. Is this more burdensome for the body? What are the benefits?

SPEAKER_02 23:15

I hear you, but it's still so hard. Like if someone like like back to my sister, like, yeah, the doctor didn't say she has any chance of living, but to her, like she just wanted to live so badly that she wasn't gonna admit that she's ready to go in hospice and she was so and she was in pain and she was uncomfortable, and her friends and family were like begging her, and she was like, No, no, no, you know.

Living Until You Die: A Mother’s Legacy

SPEAKER_01 23:40

It would never be my place to tell anyone what to do, it's personal, and and there's no pressure. But at the same time, I I wonder, I'm curious, if her decision, since you're making this so personal, and I really applaud your vulnerability, was based off of information that was inaccurate. What if she knew someone in her community that was just like her, a friend from who followed the same type of halachic, hashkafic perspective that had such wonderful hospice care? What if there was a daughter that said, Call me up, I want to tell you about the amazing care my father got, how my mother was able to be his wife and not be his nurse and his social worker and the aide, and the children and the grandchildren were able to come and be around Zaidi and for months and for weeks and for days while he got care and he wasn't just dying, he was actually living until his final breath. So perhaps the notion of we can't do hospice is because what hospice is is false. And we our avodza is to educate that hospice is just an extra layers of support when a person has a terminal illness and they're no longer clinically appropriate to continue with curative interventions at that time. When and if they get stronger, they can come up hospice. We had this beautiful from woman who was on our hospice. She got better, as I started telling you, better when I say that she was feeling better, not that her cancer went away. She went back to the oncologist, she continued with chemo, which means we revoked her hospice benefit. The team was no longer involved in her care. And you know what happened about two months later? They called us back, the team went back in, and we had this a host to care for her until she took her final breath. And when we came to Shiva, I was amazed. It was a snowy day, actually, like today, with lots of snow outside. So, and I live right near the daughter where they were sitting Shiva, and I I walked. That's how snowy it was. I walked into that hospice family's home, this from patient's home, my daughter's home. All the siblings are sitting Shiva, and I see the Gaiush, hospice aide, social worker, nurse, physical therapist, there was a from chaplain rabbi, and myself. I feel like I'm actually missing someone. There were a minimum six, there might have been seven of us that were from the hospice, all there. And we walked in, and as each person came in to be Vinachamava, because you're very involved in the community, people from all walks of life, one of the daughters kept saying, This is my hospice team. Meet my hospice team. They were incredible, they helped my mother, and I just sat there in awe, listening. Every person that came in, she kept going on and on. How she was able to be a daughter, how how her father was able to be the husband. And afterwards I said to her, you know, Adina, it sounds like you're doing a commercial for hospice. Sounds like it. Like this this would be the best commercial. You do not have anything. And she said, I feel like I'm doing one. And subsequently, I actually had her record and I used it. I use it a lot at board meetings, you know, when people are donor meetings. You hear straight from families. And I want to add that most of our families here are from families that we really have zuhlas to care for. Say, you know, not because it's not HIPAA, it's HIPAA if they don't get permission. They say, please tell everyone to call me. If there's anyone, I have people, Rabbanim's families, principals of all the schools, yeshiva lane, wherever I'm in a grocery store, people are like, for sure, call me. You help my mother so much. Like my mother got better when you came in. And so I think the tension is when the family doesn't understand number one what hospice is.

SPEAKER_03 27:37

Right.

SPEAKER_01 27:37

And and number two is that because we're in a hospital mode, we're so used to going to the hospital, you can't go back into the hospital when you're in hospice. I mean you could, but then you're you can no longer have the hospice benefit. If a person calls Hatsala and they're on hospice, they have to tell them that they're on hospice. Like they shouldn't be taken to the hospital. Now, let's say a person can't breathe and they have pneumonia and they need more intervention that would allow than being in a home hospice. They can be transferred to our inpatient unit. So that's actually in a hospital, but it's not being admitted to the hospital.

SPEAKER_02 28:11

Really? You haven't?

SPEAKER_01 28:13

Every hospital has every hospice is different, but there are different levels of hospice. So let's talk about them. One of them is the IPU, that's our inpatient unit. So that's the highest level. I'd like to call that like the ICU of hospice. So if someone cannot manage their symptoms at home, not because they don't have help. It's not like, oh, I'm sorry, we don't have a caregiver, my wife can't do this, I need to come. It's not a hotel. It's it's the guidelines are very strict actually. It's because the person's symptoms can't be managed in a home, like said. So they'll come in, they need round the clock 24-7 care, they're getting the medications exactly right, then they can get stable and go home. Because that's number one. Sometimes they come into the hospice unit because they are really terminally agitated, they're really a few days before death, and they really need round-the-clock care, and they end up dying in our hospice unit. And much less common, because we don't usually have the ability to do it, there's something called routine level of care. Where meaning if we had a bed, the patient would be able to come into hospice unit, but then they would have to pay for their room and board because they don't really they're not approved for that higher level of care.

SPEAKER_03 29:26

Okay.

SPEAKER_01 29:26

We rarely do that or can do that because we need to have the bed for people who are really acutely sick. There's another benefit that people don't know about. I'd be remiss if I didn't share with you, is called respite. Are you familiar with respite? Respite is imagine there is someone sick and the wife and kids are taking care of this man, and then they have a grandson that has a bar mitzvah out of town. So should the Bubby not go to the bar mitzvah? Should all the siblings who are there helping aunts and uncles not go? No, we are able to respit for five nights and six days.

SPEAKER_03 29:58

Wow.

SPEAKER_01 29:59

24-7 care, even though they're not that higher level, but it's the respite benefit of hospice.

SPEAKER_03 30:04

Really?

Planning For Miracles And Realism

SPEAKER_01 30:05

A really nice, just you know, I had a family use it because her children came from Maritis Rel. Grandmother was a Holocaust survivor, they were caring for them in their home on hospice. The kids came with a bunch of grandkids, and she's like, it's gonna be chaos. And also, I want to be able to be present for my kids and grandkids, and she, the patient's gonna go crazy from all the noise, right? So it was a win-win, right? That's another benefit of hospice. But you must have a lot of questions, so feel free to ask. The floor is yours.

SPEAKER_02 30:36

So I want to ask one thing that I really want to ask is about I know you said legacy care before, and you mentioned with this mother that she took her kids out of check, but what about in general, like just conversations? Like if someone knows that their mother, father, sibling, child, whatever it is, is dying, like what kind of conversations? I mean, that's definitely something from people shy away from. Like, how do you talk about that?

SPEAKER_01 30:57

And so the social worker is trained, the hospice social worker, in addition, some hospices have this is a very important piece because you asked before about children, child life specialists. So you can bring the childlife specialist. Imagine Bubby's living in the house, but the grandkids are in that same house, right?

SPEAKER_03 31:15

Right.

SPEAKER_01 31:15

They need to make sense of what's going on in an appropriate child brain, right? If you have a child life specialist, that you can also have part of the team. The social workers are the ones who are the heroes of this conversation who come in and help navigate and open it up and understanding that you first have to build trust. You cannot just walk into a space and have a conversation like this. So it takes a relationship, and often they work in tandem with other fabulous organizations like High Lifeline and um Peakworkholim or whatever organizations are organic in the community that you are in, because we as a From people have so many incredible support organizations, and so when they work in tandem with the hospice team, that's the most beautiful blend. Like everyone's speaking the same.

SPEAKER_02 32:04

So will someone say, whether it's from hospice or high lifeline or whatever, like, you know, if there's anything you want to talk to this patient about now, now is the time.

SPEAKER_01 32:12

Absolutely.

SPEAKER_02 32:13

Yeah.

SPEAKER_01 32:14

And they'll say, like, I worry, I worry that you know, your time that you're feeling good and that you're able to express the things that you're sharing with me right now as we're talking. Is you know, we're we're against the clock here with this amazing gift of time. And how can we help you? Have this conversation with your sister, your daughter, your husband, what would be helpful to you? And maybe just having a space to have a safe person give her permission to have the conversation, to think about the words, to almost role play. It's a very intimate conversation.

SPEAKER_02 32:57

Getting such like nuts in my stomach, like I I don't know. It's so I don't know, scary, sad, hard, it's like a coming out of denial, really. That's what it is.

Hospice Stories: Support And Shiva

SPEAKER_01 33:08

And I want to tell you something. Scary, sad, or the I'm just reflecting what you just shared with me. It is scary. It is sad. But when a person comes out of the denial, there's also this feeling of contentment and knowing that I didn't choose this illness, a Kharashbar who catered this for me, and I did the best I could with all the modern medicine there is, and it's an acceptance. And that is a bracha, right? That takes pressure off not only the patient but the spouse and all the loved ones. And when I think back to this mother, this beautiful young wife and mother and daughter and sister, her parents, you know, and her whole family's alive, and daughter-in-law. When I think back to her, you know what the greatest gift she gave her family? Because the way they're settling into their new rhythm of life, of course, missing her, of course it's hard, of course it's sad, right? And there are times that there are nots. I'm reflecting exactly what you said. But all but in between, the kids are playing, they are laughing, they're bike riding, they're having shoppers meals, they're moving along and living life the way their mother wants them, the way she brought them into this world, with joy, with a love of life, with positivity. Because she was so honest, and they know that she did everything she could. There's no guilt. And because she didn't suffer, there's no guilt. And it set the stage for I think very healthy grief and bereavement. The hospice team also includes grief counseling for 13 months after the loss, a bereavement counselor.

SPEAKER_03 34:56

Really?

SPEAKER_01 34:57

No charge. This is all no charge.

SPEAKER_03 35:01

Right, right. Wow.

SPEAKER_01 35:03

The only time there would be a charge, again, is if it's room and board. So if a person's in a nursing home and anyways they're paying for room and board. It's not like it's a hospice charge. It's if you're living in your own home, there's no charge, right?

SPEAKER_03 35:14

Right, right.

SPEAKER_01 35:16

But you're you you're not what brings you nuts? Is it just the feeling of talking about loss of life? Because that's very sad. I don't want to sound like I become numb to this. It is sad.

SPEAKER_02 35:28

I don't know. I you know, I I think part of it is like whenever I hear of a young mother that dies, I'm like, how did she die? How did she lose her kids? Now, obviously, how does she leave her kids? Obviously, it's not a rational question because I'm sure that she didn't want to know when she thought about it all the time and constantly. But I'm like, I don't know, I don't know. Like, don't you just hold on so tight, but like it's in our control.

SPEAKER_01 35:50

You do hold on tight. You do hold on. Oh my gosh, I wish I had, I don't have it in front of me. I I whenever I speak publicly, I always close with this incredible quote from Atl Gawande, who is a doctor who wrote several books about ends of life, but only when his own father was dying did it take on a different approach, and how upset he was when they went to the oncologist and the doctors like, oh, you're gonna be fine. You're gonna be playing tennis in no time. Well, in no time he was dying, he was not playing tennis ever again.

SPEAKER_03 36:20

Right.

SPEAKER_01 36:21

And just that false sense of hope, which I'm not against hope. Hope is number one, do never dishope a person. That's not a word, I'm making it up. But hope is very important. But I think we have to learn to hope for different things. So my hope isn't that I'm gonna be able to be at my uh daughter's graduation. My hope is that right now I can spend Pesach with my family and feel well enough to be there at the Cedar. My hope is I can now, after Pesach, get to Shavuis. Now my hope is that I can get my children off to camp this summer. I don't want them to lose out on camp because their mother died. Hope keeps changing as the illness changes.

SPEAKER_02 37:04

And I guess the way you're saying it is like a positive, hopeful tone, as opposed to someone that might say, I better get my kids off to camp, this might be the last time I could do it. Right? That kind Right, right, right.

Inpatient Units, Respite, And Levels Of Care

SPEAKER_01 37:16

And this woman that I keep referencing to because she's such an incredible to me, just like I say, this Isha Gibbora to me, you know, when life's tough and our tough life, we all have things going on in our life. I I just think to her, I think Azore M Bidima, Barina Yuktoro, her name was Rina. And and I just think we can do it, we can all do it. It's our attitude, it's how we show up. At the end, the result's gonna be the same. It wasn't her choice. No one's choosing to have a terminal illness and die. It's not a choice. Our choice is how do we show up? Our choice is how do we embrace the support that's available. Our choice is how do we involve our Rav early on so he can guide us in the best way possible according to what was most important to the patient, and of course, halakhically aligned. It's our it's our choice. When we choose to call the Rav in the ICU or in the emergency room, that's our choice. That's the wrong time to be calling the Rav. This conversation needs to happen way before, and I think the best time to have it is when it's not even Nogea to you. When you're healthy, when you have the koach of your mind and the emotional reserves, because it's not nogeia, right? It's not real. So when a person's already in that, it's you don't have the same clarity, which is also okay because we have our fight or flight, and we go into survival mode, and we're incredible people, and we're fighters, and we should fight, but we should also ask. We should also bring our rub into conversation much earlier, right? And that onus is on us, that's not on the ruff, and it's also incumbent upon us what we share, because when we only share some of the information, the rub can only pass in on the information that's given.

SPEAKER_02 39:12

Right.

SPEAKER_03 39:13

Wow.

SPEAKER_02 39:14

Okay, I I I think the knots are also like I found myself as you were like talking a little bit, like spacing it out, and then I pulled myself back in. But like I was going to like, because also I lost my parents when they were both young, and like my mind was going to like I just like I want to do it the way you're talking. I mean, after 120, at 120, I want to do it the right way, but really like I I I can't die until my youngest is at least 75 years old. Like, they can't go through the pain that I went through.

SPEAKER_01 39:44

But we don't choose this, and I'm so sorry for all of your loss. It sounds like you have a lot of compounded loss and grief, and it's incredible that you're taking your own personal experience and sharing it and creating a platform to help others, even just to normalize talking about this is a tremendous gift. So, ashracha to you that you have a space that you can do this because you don't know the seeds you sow, and you don't know who's listening, who this piques their interest. And it's important to know that this hospice is not for everyone, okay? And if a hosp a person chooses not to do hospice and they die in the hospital without it, that's their choice. This is personal, it's not a right way. Don't feel like you did it the wrong way.

SPEAKER_03 40:31

Right.

SPEAKER_01 40:32

Okay? You have to choose what's right for you, and that's I choose what's right for me. And what goes into Chaya Lassan's choice isn't just Chaya Lassan. I'm a wife, I'm a daughter, I'm a mother. Please, God, none of this will be relevant. But it's something I I very much have talked about. My kids know, you know? Filling out advanced care directives, having real honest, raw conversations with your spouse. It doesn't have to be your oldest child that's going to be the one in charge. Maybe that's not the right person. Maybe it's too hard for her, if it's a her, especially.

unknown 41:03

Right.

SPEAKER_01 41:04

Maybe it's someone else in the family. Maybe it's someone who has some clinical background, even if it's nothing to do with this, but it's they understand more of the nuances and the navigating the healthcare system is complex if there's someone, you know, clinical. But don't ever feel like you did the wrong thing. I want to make sure you realize that.

SPEAKER_02 41:21

Yeah, I mean, but yeah, I I hear what you're saying. Everyone has to make a choice and what works for them, and hopefully they think it through properly without living in denial, because denial I think people hide behind my experience, unfortunately, is well-meaning from people, and I'm not judging anyone, and there's no way they would even know to do differently, actually.

SPEAKER_01 41:44

Hide behind halacha and say, we can't do this, it's not halachic. It's against halacha, which shekir.

SPEAKER_03 41:53

Right, right.

Legacy Work, Child Life, And Tough Talks

SPEAKER_01 41:54

So asking when is the right time? What's going on? How can we be of support? I mean, the sources are all there. There's Rishonim, Ahronim, Contemporary. I'm saying you can learn for pages and pages and pages, and you're gonna have Ravel Yasha saying one thing about one specific area, and you'll have Mushlam Alaman Arbach saying something completely different, and they're both right. That's the beauty of our beautiful, you know, legacy and and our halakhic framework is you gotta pick what Rav we're following because Ravashar Weiss is saying one thing, and you know, maybe another Rav is saying another thing. Who are you asking and who are you following? And right that's what we're doing.

SPEAKER_02 42:37

That's it, right.

SPEAKER_01 42:38

And that I guess don't looking back.

SPEAKER_02 42:40

Right, and I guess that saves a lot of uh family conflict when it's decided beforehand. Right.

SPEAKER_01 42:44

I can't stress that enough because there's nothing more important to the dying person than to see their children bashalom, and how sad it is when children are not sitting shiva in the same house. It's the saddest arguing at the end of life. Yes, do this, don't do this, take her back to the hospital.

SPEAKER_03 43:01

It's wow.

SPEAKER_01 43:04

So I think the greatest gift we can give to our children is having these conversations. Early and often things change, normalizing that life is a bracha and that every day is a gift, and that death is part of life. And it doesn't mean it's not sad when a person dies. It is sad. But when we know that we lived our best life, it's a feeling of he name me, here I am, Akkadish Barakur. You gave me this life, and you take this life. The nifter is fine, but it's all of us who are left in the wake. And it depends, what are we leaving them in? A tsunami, a tornado, or in a calm day with the sun shining at the beach, like this beautiful mother did with her family.

SPEAKER_03 43:47

Right.

SPEAKER_01 43:48

That's our choice.

SPEAKER_03 43:50

Wow.

SPEAKER_01 43:51

How much do they have to clean up after is really where the the work is.

SPEAKER_03 43:56

Right, right.

SPEAKER_01 43:57

And I just want to say one more thing. I don't think we spoke at all. About kids' hospice. Kids' hospice is completely different. So if a child, Rahman al-Slan, is sick with a terminal disease, the benefit is they can have complete curative treatment alongside hospice. So it's not one or the other. Okay. So yeah, and I don't know if that's until the age 18. I'm not sure what a kid is. 21, 18, maybe depends on your insurance. Might be 20. Okay, that's important to know.

SPEAKER_03 44:23

Yeah.

SPEAKER_01 44:23

Yeah, kids' hospice is completely different. It's not at all.

SPEAKER_03 44:28

Are you part of that at all or not really much?

SPEAKER_01 44:31

In my current job, no, we don't have a kid's hospice. Where I used to work or I built a Jewish hospice, we did have a kid's hospice. Our community is so awesome, and I imagine yours is as well. And just Mika Amcha Yusral. And I say our I don't mean just Baltimore, I mean our incredible from world that we're a part of, our broader Jewish world that we're a part of.

SPEAKER_03 44:50

Right.

SPEAKER_01 44:51

We take care of each other. And so often our families don't need the same support from the hospice team. And the hospice team, I've helped them understand that they shouldn't feel bad. You know, you have so many incredible organizations.

SPEAKER_03 45:04

Right, right.

SPEAKER_01 45:05

That are jump in. And that's why the hospice team sometimes it's good to be involved with the organizations to just kind of steer the ship of what's really going on from a clinical.

SPEAKER_02 45:16

It's funny because um I'm I'm from Detroit. I grew up in Detroit, so it's just very different of the smaller community and whatever. But I lost a brother also, and he he was in hospice the last whatever few days, maybe two weeks of his life. And you know, they came every day or a couple times, whatever they did, I don't even know. But they were there when he was actually when he actually passed away. I think they were there. I don't know if they just happened to have come or someone called them. But within minutes, you know, my brother's Rebbe and the Rob and the blah blah blah blah blah blah blah and the aunts and uncles and whatever in the house with 12 people. And one lady looked at the other lady and heard it goes, I don't think we're needed here. And like they felt stupid and they left.

SPEAKER_01 45:53

Yeah, and so that's a big part of my role is helping the staff who are so integral realize when it's their time to step away and not to feel slighted if the family doesn't even utilize some of the support because we don't need it. That's okay.

SPEAKER_03 46:07

Right, right. It's personal.

Acceptance, Hope That Evolves, Healthy Grief

SPEAKER_01 46:09

No, nothing personal. Everything personal is because we actually take such good care of ourselves and each other that we don't really need that. But at the same time, I think on a beauty of hospice, I remember one from lady said to me, She admitted her husband to hospice, then she called me an hour later. She's like, What did I just do? After they left, I started reading all the papers. I put on she's like, Oh, I put on my glasses and I'm reading all the small print. And she called me up, like panicking. What did I just like sign him away to? Like, I don't want to give up. So I had to talk her down and validate her and say, I know, don't read everything that you see. You know, when you ever take medicine, you you know, you're taking the medicine because you need to, and if you read all the side effects, you would not take this medicine, right? Right. So like read it with a grain of salt. But then I also said to her, You you said you wanted this and you wanted to be able to be his wife, and you don't want to be in charge of all. And she's like, Right, right, and that's what I'm gonna have. I was like, Okay.

SPEAKER_03 47:10

Wow.

SPEAKER_01 47:11

So then she's like, Oh, right, right, right. She just needed someone to like anchor her back because in a minute she could have, and she could have. If she decided it was the wrong thing, she could have revoked. But then she I think she called me up maybe before Chavez. She left such a gorgeous message. I was so happy I did not pick up the phone because I was able to take her message with her permission and actually write it and transcribe it and read it at a staff meeting, which is so important for our staff and our board to hear. And her words, I don't have them in front of me, but this went something like this. And she had a beautiful front family, and all the kids lived here and very support. It's not because she was alone, okay? She said, When the hospice team came in, she said, I feel like I have a whole family, a care team holding me up. That's not because she didn't have a family, she has a family, right? And I can finally just be the wife.

SPEAKER_03 48:07

Wow.

SPEAKER_01 48:09

Like she didn't have to play quarterback and be figuring it all out. And the other amazing thing about hospice is the goal is to keep the patient out of the hospital. We have 24-7 triage line. So even though your nurse doesn't work after five o'clock, there's another nurse that does work starting at five. Right. Evening, weekend, you know. And often it's just a telephonic call, but sometimes it's a visit, depending on what is needed.

SPEAKER_02 48:34

I I think that it was other questions or clarity. Well that we did this, I feel like it's gonna bring such an awareness to people. You know, I I don't know that this podcast is gonna make people decide to use hospice, but they'll look into it and they'll do their research.

SPEAKER_01 48:47

I don't think the goal is to have anyone have to do hospice. I think the goal today should be that we we recognize and we value that death is a part of life, according to the Torah. And perhaps learning it more source would help our people, because we are a people of the book. And maybe if we opened up and saw all of the numerous places, starting all the way back through contemporary postkin, how much this is a part of our learning, we just aren't privy to it because we don't take the time to do it. Number one, and number two, to have courageous conversations, open up the conversation that when the time comes, what is most important to me, who is my rub that I want you to consult with, and fill out an advanced care directive. If Hasbashalam, a person does not have their voice, we will know exactly what is important to them.

SPEAKER_03 49:42

Right, right.

SPEAKER_01 49:43

So have this conversation often, not on a one time. Like you know, the same way you change your batteries in your like carbon monoxide or your fire alarm, you know, yearly, speak it up, see what's going on. It's kind of like recharge our own batteries, exactly. You know, I'd like to think of the story of it's not a story. Rabbi Hudahanasi was so sick and he had a nursemaid, and it says that Rabbi Hudanasi was going in the bathroom and out of the bathroom and in the bathroom and out of the bathroom, and he was in so much pain and so uncomfortable, and he had to take his twil and on and off and on and off, and maybe it was a GI cancer, who knows? It doesn't say, but something wasn't right. And all of his disciples, all of his Talmidim, all of his students were Davening because we believe in the power of prayer, we believe in miracles, we believe in Tvila, and his soul could not leave his body because of the tvila. And this nursemaid, it says the nursemaid, in her wisdom and in her splendor, I like to think of her as the first hospice nurse, saw exactly what was going on, and she took an earthenware jug and she threw it out through the window, which there probably was no window, but through the hole in their clay hut, threw it down, and in that moment, everyone stopped for one moment, Davani, to look up and see what was going on. And in that moment, her master, Rabbi Hudanasi's Nishama, was able to be returned to the creator.

SPEAKER_03 51:20

Wow, wow.

SPEAKER_01 51:22

And so this is not a new thing. Yes, hospice is new in the 70s. It's not new to be able to gather our children, parshisvayhi, like you alluded to earlier, give them artsava. Ruvein, shimon, levi, come on up, each one, right?

SPEAKER_03 51:40

Right. Wow.

SPEAKER_01 51:42

And so I think it's the greatest gift we as mortal human beings can give our families. Don't leave it for the old people. Like we need to do it. The young and healthy.

SPEAKER_02 51:50

Wow. Okay, I I think we covered so much, and I think you gave like so many beautiful, important messages. But I guess before we end, if there's anything that we skipped that you want to leave off with, I can't emphasize enough the importance of asking, of asking and having these conversations before it's really Lamaisa, but how much more so when it is la Misa?

Early Rabbinic Guidance And Family Harmony

SPEAKER_01 52:12

Don't assume as a from yid that we know, because often we assume in a much stricter way than Hallahah dictates. I've seen that happen. And we cannot withdraw treatment. There's a concept in Jewish medical ethics: withdrawing treatment versus withholding treatment. Withholding is often permissible, according to Hallaha. Withdrawing is rarely ever kallahically allowed. For example, a person didn't need to be intubated because they may not be able to be extubated. Maybe they could have had other oxygen support through other means. Whereas we cannot stop a feeding tube if a person has a G tube in them, but maybe they didn't need to put the feeding tube in. There's other ways of getting hydration through IV. And again, I can't stress again enough that just because a person's in hospice does not mean they're starving to death. They can have IV hydration, they can have whatever their body is available to take in. And know that at the end of life, the body is shutting down and conserving energy and trying to just use all of its resources to send the blood to the vital organs to breathe. And it's completely normal and expected that a person's not going to want to eat anymore. It becomes a burden. And that's why sometimes the IV fluids are helpful, especially with some nutrients.

unknown 53:38

Right.

SPEAKER_01 53:40

We need to offer that. But then also be careful that it's very slow in a very small amount. Because we give too many fluids and we have fluid overload, and then we could God forbid hasten death. Pneumonias, right? So we need to be careful. You know, it's not all or nothing. And it's not always fight until the last moment. Because as Atulgawande said so beautifully, and I wish I had his quote here, he says, When you're fighting, you don't want a leader that's gonna just fight till there's no more territory. Like basically everyone dies along the way. You want someone who knows when to surrender. He was talking about Robert Ilian Castard. When to surrender and say, Okay, I didn't choose this. I fought the best I could. You sent the Shaliach to help, and now it's up to you.

SPEAKER_03 54:36

Beautiful.

SPEAKER_01 54:36

So thank you so much. Yeah, say thank you. Thank you to you. Thank you for giving me the platform to have this very intimate, courageous conversation. Enlightening, great. I hope it's educational. Feel free to put my information down. I'm happy if people want to send me an email or call me. Feel very blessed to have been guided really almost blindly into this work. I was a NICU nurse for many, many, many years. Neonatal ICU, the circle of life, helping birth the soul, bring in a shama in, and a soul leaves the life. They're actually not so far, they're really right next to each other. So much that I learned in the beginning through NICU. So many of the things the way a baby comes in are parallel as a soul's trying to lead its body.

SPEAKER_03 55:26

Really?

SPEAKER_01 55:27

For example, a baby doesn't come into this world eating uh, you know, schnitzel and a smoothie, right?

SPEAKER_02 55:33

No.

SPEAKER_01 55:34

French fries. Well, mine come in eating that. Carefully curated, tailor-made by a Kaddish barakubrasnel or formula, simple nutrients. At the end of life, a person can't eat anymore. Babies needed completely to be cared for emotionally, physically. A person at end of life uh often needs that cocoon of life. Often they have difficulty even being able to maintain their own hygiene. And they may need to be bathed and cleaned up and changed just like a newborn baby. And when you look at it in that way, how a baby is completely dependent on the people who love them, and often when a person's dying, they become completely dependent. It helps take the burden off the person who's sick because people don't want to be a burden. But this is the circle of life, this is exactly the way it's supposed to be. There are so many similarities.

SPEAKER_02 56:30

Well, you want to Okay. Well, like I said, thank you so, so much.

SPEAKER_01 56:33

Thank you. And um, please feel free to share my information.

SPEAKER_00 56:40

You've just listened to an episode of the Grief Journey Podcast with Miriam Ribiat, brought to you by Mayrim. For more episodes, please visit the Mayrim website at www.mayrim.org. Help us reach others who may benefit from this podcast. If you know someone who might find it meaningful, please consider sharing it with them. If you have questions or comments for the speaker, or if you would like to suggest a guest for a future episode, we would love to hear from you. Email us at podcast at mahrim.org. We look forward to having you join us for the next episode.