Why Hospice Care Matters with Ellen Long Stilwell

This episode is all about hospice care and helping loved ones transition with dignity and grace. Today’s guest is Ellen Long Stilwell, a registered nurse who is certified in hospice and palliative care. Ellen has been a nurse for a long time, but she started out in hospice care through volunteering. She’s also a trained death doula.

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On this episode of the Live. Love. Engage. podcast:

• What drew Ellen into hospice care.
• What is unique about hospice care and where it takes place.
• The most surprising thing Ellen has learned in this work.
• How Ellen supports the family with education every step of the way.
• Her personal experiences with death.
• Why Ellen says she really loves her job.
• What a death doula is and what prompted Ellen to become certified.
• The biggest misconception of hospice care.
• The changes that take place in the journey to death.
• Why comfort matters so much in hospice care.
• Other common misconceptions about hospice.
• What Ellen’s book is all about and what inspired her to write it.
• Why Ellen says death is as natural as childbirth.
• The benefit of seeking out hospice care sooner rather than later.
• What the hospice team is really there for.
• How hospice care helps foster relief and connection.
• How becoming comfortable with the inevitable makes death easier.

Connect with Ellen

Ellen’s website: https://www.ellenlongstilwell.com/

TRANSCRIPT

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TRANSCRIPT

You’re listening to the Live Love Engage podcast on today’s show, we’ll be talking about hospice care and its role in helping a loved one transition with dignity and grace.

Stay tuned. I am Gloria Grace, Rand, founder of the Love Method and author of the number one Amazon best seller, live love engage How to Stop Doubting Yourself and Start Being Yourself In this podcast, we share practical advice from a spiritual perspective on how to live fully. Love deeply and engage authentically so you can create a life and business with more impact, influence and income. Welcome to live love. Engage.

Namaste. And welcome to another edition of Live Love Engage. I am so delighted to be with you today to talk about a subject that has a special place in my heart. But first, before we get into all that, I want to welcome our guest on the show today and her name is Ellen Long Stilwell. So welcome Ellen to live, love engage.

Hi, thank you for having me, Gloria.

Well, thank you for being here. And let me tell you a little bit about this woman she is. She’s an angel on Earth. Let me just say that because of what she does, she is a registered nurse, certified in hospice and palliative care, and she’s started on that. Back when she was raising her two boys, she volunteered as part of a hospice team with the metropolitan Jewish health system and then kind of continued doing some work with visiting nurse service. And she also cared for hospice patients and families. She really kind of, I guess, spends a lot of time working with patients and their families at home, which is the heart of hospice. And she’s also trained as a death doula by a Buddhist monk, and I definitely want to ask you about that as well. But how we even I think especially connected was through a publicity summit where I know you were promoting your book, which for those of you who are not able to watch the YouTube video, she has a lovely poster of it behind her and it’s called Love, Death, Love embracing the journey to death. So, you know, I am familiar with hospice because my my sister went into hospice care five years ago, actually five years ago in November. It will be. And it was, you know, a sad part going into that. And yet also it was a godsend. And I can’t say enough good things about hospice. So we’ll get into more of that in a moment. I know from you, Alan, but first, I want to explore what drew you to hospice care because this is not something that everybody wants to deal with, you know, because it’s not always pleasant being able to deal with death, especially here in the United States, we’ve got a weird kind of fear about death. So right to that. Yeah, yeah.

Really, what drew me to hospice care? Ultimately, it was really many steps. But but ultimately, actually it was the death of my husband. He died at forty-eight of pancreatic cancer. And it was was through his illness when he died. I said, I’m going to be a hospice nurse. Hmm. And that’s really that was a decision made when he died because, as you say with your with your sister, that of course, it said the diagnosis life changes upon diagnosis immediately. But then, you know, getting through it together, supporting each other, and that he died so peacefully with his family around him. You know, it’s it really changed my perspective, and I had been a nurse since nineteen eighty-six. He died in two thousand three. And so I had experience as a nurse and as a young nurse. I was really very in, you know, I felt very inadequate with dying patients and death in general, especially going from the floor of Med surge units to the ICU. Oh my goodness. You know, they don’t prepare you in nursing school at all regarding death, so you learn by experience. Hmm.

That’s that seems very hard to have to do that, you know?

Yeah, it was. It was very hard. Yeah. Oak life experiences beyond nursing. You know, my sister too passed away. She was ill for several years and and again, we did it together. Know she she looks my help and I was looking for her help too, through the whole thing. And and it was really her illness that taught me so much about death. Well, tell

Us for those who are maybe fortunate, hopefully in a way not to be familiar with hospice care. What is what is unique and about hospice care, but also what is there? What is there sort of specific function, right?

Well, when when a patient and family decide no further treatment, that’s when hospice care comes on board. And typically, it’s done in the home, which I consider the heart of hospice in your own home. And then the hospice team comes in. It’s the R.N. or social worker or medical doctor, spiritual care counselor, home health aide. And there’s also volunteers as part of the hospice team. I did that for five years when my children were young and. So this team of very passionate individuals, they love their job. There’s nobody working in hospice care that doesn’t want to be there and very passionate about their jobs and, you know, physically, spiritually, psychically, this team comes into your home and helps not only the patient, but the family as well. And the goal of care is comfort, so comfort on many levels. Ninety nine percent of the time that is achieved.

Hmm. Yeah. And that’s how I was going to ask you two about about caregivers, because that’s something else that I know I benefited from is that they would schedule a time and say, OK, Gloria, you need to like, you know, go out, go to the movies or something. And you know, and then we will have someone from hospice here to take care of your sister while you’re gone so that you can get a break. And I think that’s important for caregivers to realize that they don’t, you know, of course, they want to take care of their loved one, but you really can’t continue to do that one hundred percent of the time, 100 percent of the time.

That’s right, self-care is really very important. So yes, there’s a home health aide, part of the team Monday through Friday, three or four hours a day. So that would be that schedule time to plan something for yourself as the caregiver. Very important. Come back fresh. Do some things for yourself.

Yeah, absolutely. What happened? Well, let’s see, I’m trying to think what what’s been the maybe either hardest or most surprising thing that you’ve had to deal with?

Actually, let’s go there.

What’s been the most surprising thing that you’ve had to deal with when you’re in doing hospice care?

The most surprising thing? Well. Actually, I’m surprised every time it happens, and it’s when usually when I arrive in the morning I loved, one would say, you know, Ellen, something strange happened last night and they would explain the patient usually like waving their hand may be reaching out very gently, and usually they call a name, maybe say a few words to whoever they’re reaching for. And it’s usually someone who’s deceased. And it baffles those involved because they know the person they’re talking to is is dead. So it just happened so often. And I love when people share this with me and sometimes I get a chance to witness it too. So it continues to surprise me, and it’s incredible how often it occurs. Yeah, it’s very comforting for everyone involved.

Yeah, I can. I can imagine. I think we I really had that and my sister had that experience. But what I can imagine that it would be very, very helpful for everybody. Yeah. What what do you maybe wish you might have known about hospice care when you first started out?

Yeah. Well, it’s definitely is also a learning curve. You know, everyone starts out not knowing when I come in. So. It’s not so much about my not knowing, but it’s about the family not knowing, and it’s continued education all the time, like I’ll go into a new family’s home and it’s square one. You know, it’s it’s, you know, taking care of someone who’s bedbound. You know, I’m quite versed in it, but families can’t imagine changing sheets while someone’s still in the bed or. Yeah. And that’s ultimately what happens. Our patients, the loved ones are bed bound for a couple of weeks, usually, maybe sometimes longer than that. And so it’s continued education, always and some people. Have a medical mind and others don’t, so so it’s a team effort. It’s definitely a team effort with and it’s it’s always education is so important and a continued education. You know, every step of the way. And the more receptive family members are, you know, it’s it’s just it’s really it’s really a nice place to be for me, helping families get through this because I have been through it. You know, I’ve I’ve been through it professionally and so, so many personal losses. I mean, my dad died in 1990, then my niece in ninety one ninety two, my mom passed away and then ninety three, my sister passed away. Two years later, my brother. Yeah, it was really crazy. Yeah. And then. And then my husband passed away and then my brother and then another brother in law, so yeah, so we were really as a family, you know, we all I’m one of seven. And everyone was very present for each other and for the individual who was ill. So I have a lot of experience, a lot of personal experience as well as professional. So now that I do it as a hospice nurse, you know, I I really love my job, you know, because I enter into the home and and these families are where I was and and I love to be able to help them. And hospice does help them.

Yeah, absolutely. And you know, one of the things that maybe people don’t even realize, too, is that it’s it’s not even in addition to, I should say, in addition to the wonderful support of the people, but they also provide supplies to because like, you know, which maybe people don’t even realize, but I hear you talking about someone who has to be bedbound. That doesn’t necessarily mean that they’re in their own bed, but they because my sister, they had a bed brought in basically a hospital bed because that’s going to be. Yeah. And so we had to put that in the living room. And then also, you know, she needed like, you know, potty and all that good stuff for the bedside commode. Yeah, because you can’t she wouldn’t be able to make that walk into the bathroom. It was too far. So, you know, these are things that they do. They provide supplies, they provide the people. And and as you say, it’s not even just, you know, medical care, but also spiritual care and emotional support because it’s, you know, when people are facing end of life, oftentimes they start wondering, you know, what do I believe? I mean, my sister and I would have these discussions, you know, it’s like, You know what? Yeah, what do you believe? And I know it was good for her to be able to have someone to talk to because

Her beliefs

Have had kind of shifted over the years. And she was, you know, not and believing in some things as much. And now it’s like, Oh crap, you know, now I’m facing the end here, what do I do so?

And that’s very often the case. So there is a spiritual care counselor and there’s there’s actually a Catholic priest, this really cool guy that you would never imagine as a Catholic priest. And then there’s a Buddhist, and then there’s a rabbi. So. And with that being said. If one of these individuals come into someone’s home, they meet that person wherever they are, nothing is pushed on them. And very often I’m told, no, I don’t need any spiritual care and that’s fine too. Whatever part of the team you don’t want, that’s fine. So hospice comes in and meets you where where you are, and that’s on every level. So we we really take the lead from the families.

That’s awesome. I’m glad that you mentioned spiritual caregivers in particular, because now you reminded me that I know that you said in your bio that you also trained as a death doula by a Buddhist monk. So I’ll tell us a little bit about that. What? What is a death doula and what even prompted you to do that?

Well, when I was a volunteer for those five years, the chaplain. Who was assigned to the area where I was assigned? Was this Buddhist monk. So he felt there was a need for people to do vigils constantly by people’s bedsides, particularly for the homeless, because they didn’t have friends or family. So what he did was choose. He hand-picked several volunteers and then he did a six-month training program where he and a seasoned hospice social worker. So we would meet weekly and then he would bring in our therapist, a music therapist. He also introduced us to the care coordinator of a hospice floor. And they would present to us how they felt we could help the patients. But really, basically a death doula is really someone who is a companion, someone who’s not afraid, someone who stays present, and the need that this Buddhist monk felt was for the homeless. So we would do vigils for these folks who really had no family and no friends. So that was why he did it, and that was really a long time ago. Now this programs for death doulas, the certificate programs for death doulas. I mean, it was really it was really kind of a pioneer with it, you know?

Oh, very cool. What are some of the misconceptions that maybe people have about hospice care?

That is a really good question, Gloria, because very often I really have to. Really address that. And the biggest misconception about hospice care is people feel that hospice care hastens death that we’re there to to bring on death. And that’s that’s absolutely not true. We enter again where the patient is and the family is, and we allow a natural death. The goal of care for hospice is comfort care. So. In the journey to death, there’s physical changes, and as these physical changes occur, there’s a comfort box, there’s literally a box of medications sent upon admission to hospice care, and it’s marked do not open unless. Advise and normally we ask that it’s put away someplace out of sight until it’s needed and in that comfort box is several medications for these physical changes that occur when our bodies very naturally, each organ slows down and starts shutting down, which causes physical symptoms. So again, the goal of care is comfort. So within that box is. Morphine and everyone seems to think that more morphine hastens death. And it doesn’t. But morphine is given at end of life for these physical changes, specifically for breathing pattern changes. So this myth occurs and continues to be believed because someone is at end of life and morphine is given and then death occurs. So morphine is given this bad reputation when in fact. It’s given for pain when a patient is unable to swallow anymore, so it’s given sublingual. And it’s also given for these breathing pattern changes. Naturally, our bodies are working harder to breathe. So our breathing becomes labored and morphine given under the tongue works beautifully for calming down the muscles that are causing this labored breathing. So that’s a big misconception that I have to explain sometimes on the first day. A that’s illegal in New York state to hasten death in most in most states, it’s illegal. So hospice is really not there to do that. So that’s the the biggest misconception that I really have to answer very gently, very often.

Hmm. Well, I appreciate you even stating that because I think. If it was explained to me at one, my sister was was on like her last day, I probably didn’t hear it, you know, because I was so, you know, in the throes of like, Oh crap, you know, this is what’s happening now because, yeah, they did recommend, you know, for me to give her morphine. And I did, you know, through the night because I did hear the labor breathing and and then all of a sudden I realized that I wasn’t hearing the breathing anymore. And that’s when I realized that she had passed. And I still remember going over to her and just really, Mikayla, you snuck out on me when I wasn’t paying attention, you bum. But I also understand from I. I told that to my hospice nurse, and she said, Yeah, that happens frequently. Have you had that happen in your instance? Yes. Oh, yeah, sure.

I mean, our loved ones, really, they want the best for us. So they’re going to pass very peacefully and very often they’ll wait until we’re out of the room. We may simply go to the bathroom and they’ll take that time to pass over. Yeah, very often our loved ones wait until we’re gone to do it very quietly on their own. It’s really very common. It’s incredibly common.

Yeah, yeah, absolutely. One other misconception I think that I know I experienced and maybe you can comment on this as well, is that I think a lot of people think once you’re on hospice, you’re on hospice and that you can’t get off. But if because this happened with my sister and you know, yeah, you know, pretty much we knew the end was was coming. And I finally got an opportunity for her to go see a doctor for a different type of treatment that we thought might at least prolong her life and give her some pain relief. And so we actually had to get off of hospice care in order to do that. And then right when it didn’t work, then we were able to get

It back on to hospice, right? You can be discharged from hospice, right to pursue treatment. Mm hmm. And then and then come right back on to hospice, too. And you know, some people when you when a patient comes onto hospice, two physicians are signing a document. So it’s it’s the private medical doctor and the hospice medical physician. They both sign a consent where in their professional opinion, the prognosis is six months or less. Right. And treatment has stopped. Well, guess what? Sometimes people get to six months. Yep. And yep, and they are. They are enjoying life on some level with their family. So according to the Medicare guidelines, so if if a patient of meets criteria, then then they continue on hospice past that six months. Mm hmm. That’s good. As with your sister, if you want to pursue treatment, you that’s you are free to do that.

Yeah, absolutely. Yeah. And that was that was a relief because we were both kind of wondering about like, OK, well, you know, can we do this and what it was?

So so I’m sure, can you confirm that?

Yeah, because. And I think that’s important for people to know because, hey, we live in an age where there are wonderful new advancements in medicine. And so people, you know, might be able to get some, some help. And again, maybe it’s even just quality of life for a little while, you know, to extend it for a while. So, yeah, right.

So I just want to point out again, it’s really where the patient and family are. It’s we we use you as a guide and you are making the decisions. Mm-hmm. Yeah, absolutely.

I want to shift gears a little bit. And have you talked to us a little bit about your book? So what’s the book about and why did you decide to write to write it?

Mm hmm. Well, just last year, actually March of Twenty Twenty, I completed it and it was published. It’s called Love, Death, Love and it’s. It’s short stories of my various experiences. I start off. Actually, as a young nurse and I talk about my experiences in the ICU and really my fear, my fear about death and as as the short stories progress, it’s it’s my experience as a hospice nurse. So for me too, I was quite fearful and then I gained experience and and now I’m not afraid. I’m actually intrigued and I am passionate about it. And very often I witness a beautiful death. And that became my experience, and I just thought if I wrote it in a book. For others to read that they could be helped as well. And plus two, when I was a volunteer, I I was told by the nurses, You know, what is it that you’re saying to the patients because you’re really very helpful. They tell us you’re helpful. And they just used to like to see me come in and they knew what patients they were going to send me to. And really, I was saying the same thing over and over again, and that was my experience with my husband.

So the longest short story is actually regarding my husband, and that was what I found myself repeating to patients, and they found it very, very helpful. So the book is is written. I write it for the reader, I’m talking to the reader, and the reader is the. Terminally ill person and their loved one, the caregiver. So that’s who I wrote the book for. And I just really want to lighten the load. And and educate as as as the reader reads the book, and I’ve been told numerous times that it’s very uplifting, it’s not. I don’t know what people think about a book about death, but I don’t think it’s uplifting, but it is a very uplifting book about death and actually Jack Canfield, the co-author of Chicken Soup for the Soul. He’s read the book and he’s endorsed the book. And actually, I changed the cover to add his endorsement, which is, this is a beautiful book. Very sweet and useful. So there you have. It’s an uplifting book about death. Yeah, yeah.

We should be getting it into hospice facilities. I would think this would be, you know, a good way for you to have them hand it out to know patients if they’re interested in it and their families.

That would say, I’m trying to do actually just that.

That would be very helpful because it’s, you know, it can be overwhelming, you know, this whole process and anything that you can do to lighten someone’s load and alleviate some of the stress. You know, I think would be helpful.

So yeah, right? And that the fact that death is really as natural as childbirth, you know, very often. When someone’s getting close to the active dying phase, they’re comfortable. And we’re waiting, we’re waiting, and everyone wants to they ask me, well, when’s it going to happen? And you know, of course, I can gather facts and and give a generalization. But really, when a baby is being born, we’re waiting. That’s right. Yeah. And then and then when we’re dying, we’re also waiting. It’s it’s it’s so natural and and very often it’s a beautiful, profound experience for everyone involved. Hmm. Yeah. Yeah. I highly recommend invite the hospice team in sooner rather than later.

Yeah, definitely. It’s yeah, it was a big like I say, it was definitely a big support for me and especially at the very end and and to have to have that is it’s so important. So I’m glad we’ve kind of talked about some of those things. Is there anything that anything else I should have asked that you want to be able to communicate about hospice care to people?

Well, maybe just repeat again to come sooner rather than later. There’s the misconceptions, I think. There are many and people hesitate. And really, it’s a team of people. Who are simply arriving in your home to help, you know? That’s true. And we have to be allowed in, yeah, to help. So, you know what, when we can stop resisting the fact that death is going to occur, you know, because there’s a lot of hope. Yeah, there’s a lot of hope. Maybe this isn’t going to happen. And from myself. When? I. Actually, my husband and I took a trip to Lourdes, France. Hmm. And it was after bathing in the miraculous waters. The women go this way and the men go that way. And it was my experience. That there was no miracle going to occur here, but to accept what was unfolding, that was my miracle, which I actually kept to myself. But but that helped me to care for him in the present. Yeah. And appreciate every day. Because. Because. He was going to I was going to lose them. Cancer was going to win. So when I stopped resisting and I cared for him every day. It really it really was a profound, beautiful experience.

That’s wonderful. I’m very glad that you have that and that you’re now able to be able to pay that forward to other people because I do, I also want to be able to just reiterate that hospice is there to help the patient be comfortable. I mean, that’s that’s ultimately it. It’s to help them be comfortable in whatever way that involves. And, you know, because sometimes it it’s even helping them with getting into, you know, taking a shower or something or providing maybe, you

Know again for

A shower to

Be able to sit down in the

Shower. Right? Yeah. So it’s it’s all of these different things. So definitely if you’ve got someone you know who is facing end of life, definitely check into hospice. Don’t as as you say, yeah, don’t wait until the last minute because. When you’ve got some of these things handled, then you and your loved one can spend time connecting and so, you know, we were able to, you know, talk about comparing a different childhoods. Some of my sister’s friends were able to come over and, you know, and be able to she was able to be able to talk to them, you know, and kind of say her goodbyes to people and, you know, being able to be at home. And her thing too was she wanted to be at home with her cat. She wanted to do, you know, she wanted to die at home with her cat and she was able to do that. Her cat got up on the bed with her and he was right there with her for at the very end. So she got what she wanted, and that’s that’s

Really what we want to do. That’s what we want to do, right? That’s a gift that you able to do with your sister.

Yeah. Yeah. And I’ve definitely, you know, it was, as you know, it’s it’s not easy being a caregiver, but I wouldn’t have traded that experience for anything. And I’m blessed that especially that I was in business for myself and so that I could actually be there. You know, I didn’t have to worry about, you know, having a job that I had to take time off, you know, or get a leave of absence or something to be there. I could spend time with her and still even do some of my work. So it was

So, very good. Yeah. So really a profound experience is what you had. Yeah. And she died comfortably.

Mm hmm. Sure. Thank you so much for doing number one, for doing the work that you’re doing in the world. I appreciate it. Yeah, yeah. And keep up the good work and because people depend on you and it’s good to know that they’ve got someone like you with a caring heart to take care of you.

Thank you for saying so. I really appreciate that. Yeah. And thank you for asking these hard questions because they are hard questions and we we tend to shy away from them. And if we just become a little more comfortable with the inevitable, it actually becomes easier.

Yeah, that’s for sure, because nobody gets out of this life alive, not yet, no.

So it is we have that, including every one of us birth and death. Yes, we do.

Yeah, absolutely. So why not make it as comfortable as possible?

Right. And in acceptance, what I learned is when we accept and it takes time in the hospice team, takes that time with you to get to acceptance and and once acceptance is achieved. I’ve noticed the peaceful atmosphere that pervades people’s homes. It’s just it’s palpable the change when when we stop resisting and we accept and then really this loving atmosphere is present. So it’s acceptance and peace and love, and that’s really the beautiful death that I I so often get to witness.

Hmm. Wonderful. If someone is listening today or watching and would like to get your book, where where can they do that? Where can I get it?

Yeah. So love, death, love can be gotten on Amazon or Barnes & Noble. And also the publisher of Balboa Press. Dot com.

Wonderful. All right. Well, I’ll be sure, and I’ll have a link to that in the show notes as well just to Oh, I

Have a website too.

That’s just what’s your website? Please share

That. Yeah, it’s w w w dot Ellen Long Stilwell Dot Dotcom. Very good. You can also get the book through the website as well.

Ok, perfect. Well, we would definitely have that as well. So thank you so much for being here today again. You’re welcome, Gloria, sharing your information. I really appreciate it

And thank you.

All right, and thank all of you out there for watching. I hope you got some good valuable information out of today’s episode, especially, and I really appreciate all of you listening and watching. In fact, I want to even give a shout out to Kathy, who left a wonderful review for the podcast on Pod Chaser. So we appreciate that, and I also want to just put a quick plug in for good pods are what our podcast is available there. So if you haven’t checked it out yet, check it out. It’s it’s an interesting platform to connect podcast creators with their listeners, so I hope you’ll check that out and until the next time we connect. As always, I encourage you to go out today and the next day and the next day and live fully, love deeply and engage authentically.

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