5: Hospice - Edwina Moldover Interview

Edwina Moldover: A lot of times, people at the end of their life suffer an awful lot of indignities. And being at home with a hospice plan of care in place, brings a lot of dignity to the end of their lives, and they appreciate that a great deal. 

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Hello, and welcome to Dying Kindness, the podcast for people who are going to die someday. I'm Cianna Stewart, and I'm going to die someday. You will too. So let's all learn what we need to do and make some key decisions before we die, in order to be kinder to those we'll leave behind. You’ll hear me talk about collecting these decisions in one place, into a Death Binder. To get a template for your own Death Binder, head over to DyingKindness.com. Thank you for being here and for thinking ahead. You’re awesome. And now, on with the show.

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Today’s episode is going to be very different. First, I probably sound different because I’m moving into a new office and my mic set-up is a bit improvisational right now. I’m actually recording this inside my car. Also, I’m sharing an interview for the first time so this episode is quite a bit longer than the first four have been. It’s so worth it though. I hope you listen to the end.

It probably comes as no surprise that I was talking about doing this podcast for years before I finally launched. The cool thing about having a long lead time was learning how many people I knew were connected to someone doing work related to dying. Today’s interview comes from a couple years ago when a friend of mine told me his mother was a retired hospice nurse. He said she was really passionate about it and asked if I wanted to talk with her. Of course I did! So I got on the phone.

CS: Hi, hi, Edwina, how are you?

EM: I am good. I'm sitting here with my tea and my phone.

CS: I am also sitting here with my tea and my phone. 

We ended up having a wonderful long conversation. I couldn’t help but get infected by her love of hospice. 

EM: I love to get up on my hospice soapbox. I really do. I sometimes I have to hold myself back. 

Edwina showed me I had so many misconceptions about what hospice is and what it does. I thought it was a place, but it’s actually a philosophy. I always thought the decision to call hospice was depressing, like giving up, but she changed my mind about that. I learned that the biggest mistake we make is waiting too long to call. And she described hospice as the favorite thing she’s ever done - and she originally worked with birth midwives! 

This call has stayed with me for two years and I’m excited to finally get to share it with you. 

I should note that we talked in early 2019, before the novel coronavirus emerged in the world. So, listening to it now, it might strike you as a little odd that we don’t mention COVID. Why am I sharing it then? Hasn’t everything changed? It’s true that the pandemic introduced new constraints on in-home hospice care, exhausted many resources, and shifted some people’s attitudes about residential care facilities. Even so, when I re-listened to what Edwina had to say, I still found it valuable and relevant. I’ll just have to do some follow-up to this in the future specifically around hospice in the wake of COVID.

OK that’s enough set-up. Join me now in learning more about hospice with Edwina Moldover.

CS: So, first, I'd love for you to introduce yourself and tell me a little bit about your background and whatever you want to share first.

EM: My name is Edwina Moldover, and I have done hospice nursing for 17 years. I'm now retired, but I did work in the field for 17 years. And it was a favorite thing of mine that I did in my life. It was very rewarding.

I started by asking her to define hospice and right off the bat, I realized that I was wrong about the most fundamental aspects of it.

EM: A lot of people have the misconception that Hospice is a place. And sometimes it is a place. There are some inpatient hospice units where patients are there 24 hours a day. But hospice is really a philosophy of care. And most hospice programs in this country are home care programs where the patient stays in his home. 

Hospice is a philosophy? Not a place? That’s right. It’s all about accepting that death is the final phase of life, and easing the transition. Not speeding it up or postponing it, just treating the symptoms to bring comfort and peace.

Edwina went on to explain that the hospice team provides care wherever the patient is living and that can include an assisted living facility. But when asked, most people say that they’d like to die at home and hospice is a key part of making that possible.

While it used to be common to die at home, death has become increasingly medicalized and most people in the United States and other Western countries now die in a hospital. In fact, according to the Stanford School of Medicine, studies have shown that 80% of people want to die at home but only 20% do. Edwina underscored that accessing hospice - and using it well - can be instrumental to being able to stay at home. 

We’ll get into what “using it well” means in a moment. First, she wanted to address another thing most of us get wrong: thinking of hospice as a depressing choice.

EM: One of the most common misconceptions I think, is that Hospice is when you give up hope, and when the medical care system has given up on you. And there is nothing more that can be done and that's what you do when you're dying. And it's really not that negative at all. It's really not giving up hope, but it's putting a change of focus on hope. The time often comes when people are approaching the end of their life, when achieving cure is not so likely anymore, the illness seems no longer to be responding to curative treatments. So at that point, often it makes sense to change hoping for a cure, which may no longer be something that's likely to happen to hoping for the highest level of comfort in the quality of life for whatever time remains with someone. So it's not giving up hope, it's changing the focus to hope for comfort and really high quality of life for the rest of someone's life.

I want to underscore that because it’s really a fundamental shift to change the focus from hope for a cure to hope for comfort. The perspective that calling hospice is depressing comes from an overall refusal to accept the reality of death. But once we accept that death is the natural progression of what’s happening, then it makes all kinds of sense to me to take steps to make that progression as easy as possible.

I’m not saying that anyone is wrong for being upset that someone is dying, but sometimes that’s simply the truth of what’s happening. And refusing to acknowledge that leads us to delay access to all the services offered by hospice and that’s too bad.

EM: sometimes people think that Hospice is only for the very last couple of weeks or days of a person's life when it's very clear that the end of their life is very close. But hospice care is really designed to be a support your family for much longer time. For months, even. Up to six months. 

If you’ve listened to the previous episodes, you know that I’ve been using the scenario of an accidental death. Hospice does not have a role in that scenario. Hospice is for when your body is in decline from some cause with a known progression leading to death. This “known progression” thing is important. You’re eligible for hospice when a doctor determines that - if the disease progresses along its normal course - you’d have less than six months to live. 

Six months. If you’ve ever taken care of someone who’s dying, you know that can feel like both a really long time and not at all enough time. The person who’s dying will require all sorts of support, both physical and not. And for everyone around them, life outside the sick bay continues. There are meals to cook and dogs to walk and work to do and children to take to school. And And And.... rest. Is there ever time to rest?

Turns out hospice is made for exactly this. 

EM: The philosophy of hospice focuses very much on quality of life. And it focuses also on quality of life not just for the patient, but for the family that’s taking care of the patient. So it's a little different from the focus in the hospital where the patient is the lone focus of care. The hospice team really provides care for the family as well, to help give them support and provide them education so that they know what to expect and how to better take care of somebody who's nearing the end of their life.

I had to sit back when I heard this. I never consciously noted that the sole focus in the medical system is on the patient - not the family or other people surrounding them giving them support. Of course, the stories we hear about the best medical teams are about how well they took care of everyone, but those stories stand out because they feel unusual. The system is - of necessity - focused only on the patient. This is important for managing a disease or an injury, but it’s not complete - especially when we’re talking about a dying process that takes weeks or months. The longer it’s drawn out, the more demands it imposes on everyone around the person who is dying. I know this from my own experience. Unfortunately, in situations I’ve been in, like most people, we only accessed hospice at the very end of the dying process. I wish I knew then what I know now.

EM:  It can be very helpful if hospice care is started earlier. If hospice care just happens in the last few days or weeks, it's more like crisis intervention, going from one problem to another, rather than really planning out a plan of care that the family can be involved in. 

It turns out there’s an entire team of people who could be involved in that plan of care, depending on what’s needed by the patient and the family. 

EM:  There's a physician who is a medical director of the hospice program. And he usually helps with forming a plan of care for the patient in conjunction with a patient's own physician, so their own physician still continues to follow them, if that's their wish, then there are also nurses who are kind of the coordinators of the team. The nurses make home visits to the patients on the frequency varied according to what the patient's need is really. I should probably jump in and say at this point that the main home care program does not provide 24 hour in home care. What hospice provides is intermittent care. So there are nursing visits, the nurse comes and visits for perhaps 25 minutes or an hour, on a regular basis. It might be weekly, it might be twice weekly, or sometimes even more frequently to manage their care. Then there are also home health aides, which can be part of the team and they provide hands on care as well, they come in again a couple of times a week, depending on the need to provide help with bathing a patient, changing the bed linens, getting the patient up in a chair and back against the bed. 

This is what I thought hospice was about. But then she said,

EM: There are social workers, also, who come in. They are wonderfully helpful with working with both the patients together with the family in talking through some of the stresses that come with this kind of time in their lives, and also help them to plan realistically for taking care of the patient. And they also will discuss sometimes interpersonal problems within the family. Sometimes there are estranged family members for example, and sometimes they help those kinds of relationships heal at a very important time. 

And

EM: There are interfaith chaplains who are there if the family and patient wants them to visit to provide spiritual comfort and support.

And

EM: And hospice has wonderful, wonderful volunteers. They are just some of the most wonderful people on earth. They're volunteers who go through a special training program, and then they are matched with a family who has requested a volunteer to help. And the volunteer goes perhaps once a week for a few hours in a day, to help with all kinds of things actually that the family might need. Sometimes when a family needs to care for a patient at home, it's hard to get out and get to the grocery store or run errands. So the volunteer can run errands for the family. Or sometimes what the caregiver needs most is a chance to get out of the house themselves and go run those errands or just go to lunch, or take a walk. So sometimes the volunteer just stays in the home with the patient to be a companion while the caregiver gets out for a break. And they do all manner of other things too. Sometimes they will help set a meal for the patient or walk the dog. Just sometimes things that are hard to get done if you're caring for a loved one who's very ill. So the hospice volunteers are a wonderful part of the team. So there's a whole team of people who come to help.

Hospice care continues even after the patient dies. 

EM: And then there are grief counselors who, after the patient dies, there are grief counselors who are in touch with the family for some period of time after to help the family deal with the grieving that they are going through. 

Doctors. Nurses. Home health aides. Social workers. Interfaith ministers. Volunteers. Grief counselors. An entire team focused on the full spectrum of needs for patients AND the people caring for them. For months.

CS: It sounds to me like the biggest mistake in calling for hospice is just calling too late.

EM: I think that is the biggest one, actually, is when it comes too late so often. So that all we're able to do is to deal with symptom management, trying to get medication on board, if someone's in pain or having trouble breathing, try to do some quick teaching with the family on how to take care of this person through the last couple of days. But if we have weeks, or months is even better, to follow this family, it really gives them a chance to settle into the hospice program. And to know who we are. And what we do, it takes a little while for them, to meet all the members of our team, and understand what we do and how we differ and what services are different. It takes a while for that to happen. And once they know, then they can use those services better. But if it's just a matter of a couple days, we can't get all of that on board.

Most people end up in the hospital because they think that is the only place they’ll get the kind of medical care they’ll need. But that’s not necessarily the case - especially if you call early and get the systems and training in place to handle most of the crises that are expected in the final days.

EM: Oftentimes, people when they're in the last week of their illness, have crises of one sort or another, they have a pain crisis, and all of a sudden their pain is unmanageable, and they're in horrible pain. And they have no way to deal with this problem. So of course they need to get care for it. So off they go to the hospital. Or they have become very weak and all of a sudden they can't get out of bed, or they've fallen or something. And so they call 911 and off they go to the hospital. Or they have a breathing crisis and they can't get their breath. And so off they go to the hospital. So there are lots of sort of emergency things that results in people going to the hospital. And usually what happens is they're treated at the hospital for whatever the issue was and then they're sent back home again. And then something else happens. And they go back to the hospital, and it can be a back and forth thing. It's very difficult for the family and the patient, it's really, really hard on patients to be going back and forth to the hospital. And hospice care can help a whole lot to prevent that. In the end, nothing is done at the hospital, that couldn't be done at home, if there were a program in place to manage it. So if somebody has a pain crisis, the hospice nurse and physician can adjust the pain medication, so that they're comfortable at home. And if somebody is not able to get around and likely to fall, hospice care will put in medical equipment at home - a hospital bed, a wheelchair, a walker, commode, a raised toilet seat, that kind of equipment, so that the patient can be cared for at home. Or if they're short of breath, there might be medication that can help deal with that, oxygen might be needed. All of those things can be put in the home, under hospice care. 

I’ve read that often the thing that keeps people from dying at home, that sends them to the hospital, is not just the physical difficulties of addressing these kinds of crises at home. It’s also that the family and friends who are doing the caretaking panic and don’t know what to do. Faced with the suffering of someone we love, their only response is to call 911.

It occurred to me that having hospice in place before it was strictly needed sounded like the process of having an emergency evacuation plan. It’s been proven time and again that people are more likely to successfully execute an evacuation plan if they’ve had time to learn it and to practice it. In an actual crisis, your mind can get overwhelmed and that is not the time to be making decisions. You don’t want to be learning where the exits are after a fire has already started. And you don’t want to figure out who to call for oxygen after someone is already struggling to breathe. It makes sense to call hospice early and get things in place to make the dying person’s transition as gentle as possible.

Edwina also made the point that calling hospice doesn’t lock you in. Sometimes people recover to the point that they are no longer within the 6-month window. Or sometimes people start hospice and then just decide it’s not for them. It’s no problem to leave hospice. And it’s possible to start it up again after leaving when the need arises.

Of course, not everyone will need everything hospice has to offer. It’s not an all or nothing structure. What’s best for each patient and their family is determined through an initial conversation that’s part information sharing and part evaluation. That visit can also help figure out how to cover the costs for hospice - whether Medicare or private insurance or some other way. Many hospices work hard to ensure that finances don’t keep people away from services that they need.

Knowing how much support is available, I asked Edwina why she thought people delayed calling hospice.

EM: Sometimes, families of patients who are very Ill say, Oh, we don't want to talk about hospice, because we don't want her to know, she's nearing the end of her life, we don't want her to know that she's dying. And sometimes, families will be very firm about this idea. Until the patient actually dies. I was always very sad when I saw that happen. If that's a family's choice, it is their choice to make. But it always made me sad, because what I felt was that usually a patient knows when they're dying. It's an instinctive kind of knowing, especially as they get closer and closer. And if they know they're dying, but they are not allowed to talk about it with their family because their family won't talk about it, or they will say, "No, no, no, don't talk like that." If they're chased off from talking about it, what happens is that they're very alone. They are alone. They can't talk about their own dying and family can't talk to the loved one, the patient, about dying. And so they can't sort of say the final things that might be really important for them to say, because they're all living a charade. And it's very isolating, which is very sad at a time when one of the big advantages is for people to become closer during that time.

CS: Yeah, I want to underscore that point, that idea that it's an opportunity to be able to share all the things that you've wanted to say or to get closer or to just reexamine the relationship. But you can't do that if you're hiding. That seems like an incredibly important counterpoint to the way that a lot of people think about, you know, if we talk about dying, you know, and they don't know, we don't want to tell them. I love that you're pointing out that generally people know or they can sense something. And so now they're all on their own. And nobody's talking to them about this thing that they're living with

EM: So it goes both ways. It's not just the family not telling the patient, but the patient feeling, "Oh, I can sense that my family doesn't want to talk about this. So I can't talk about it either." No, they're they're left alone without being able to say the things that they want to say either. 

I still get torn up thinking about this. Our discomfort with talking about death can extend to silencing the people who are the ones experiencing it. So many times I’ve heard people say, “No, don’t say that! You can fight this!” And yet we can’t fight everything. Dying is inevitable and will happen to all of us. Sometimes, sure, we want to keep up someone’s spirits and the media is certainly fond of highlighting stories of fighters. But sometimes that response speaks more to the discomfort of the people around them, their unwillingness to feel loss and grief. True connection comes when we are willing to be vulnerable together - and what is more vulnerable than sitting together in the face of death?

In 2021, in the age of COVID, it’s hard enough to think about how many people are dying alone in an isolation ward. To imagine that someone could feel alone in their dying even when at home, surrounded by people they love, just because no one wants to admit what’s happening - that just breaks my heart.

EM: One of the reasons people don't want to talk about hospice care or dying, is because we don't have much opportunity to see it. People die mostly in hospitals, alone and closed off from the rest of the world. And it used to be that everybody died at home, people were born at home, and they died at home. And by the time someone was a young adult, they had seen both of these things happen. And that helped to sort of normalize the fears that surround dying, in particular, and make it a taboo subject, if it's thought  of as something that's a normal process. And most deaths actually are very peaceful, or can be very peaceful. If people know what assistance is available to help people have a peaceful death. Most deaths are very peaceful at home. And although I think being a caregiver to someone who is dying, is a huge responsibility. And it's a very, can be a very difficult thing to do. As most people who have done it will say, I have found that when I talk to the families of my patients who have died, when I talk to them, sometimes it's just a couple weeks later, sometimes it may be several months later, or whatever, when I crossed paths with them, they will say that was the most difficult thing I have ever done. And I'm so glad I did it, because it was so rewarding. And I learned so very much. And that's very commonly what happens.

Before she was a hospice nurse, Edwina assisted birth midwives. I was surprised to learn this and wondered why she made that change, from assisting with birth to assisting with death.

EM: before I started doing hospice care, I had been working as an assistant to a group of midwives, who did home birth and birth center birth out of hospital births. And I loved that. So when I started, was drawn to hospice care for reasons I couldn't exactly explain then, but I had for a long time had it in the back of my mind. "Ah, hospice. Maybe I'd like to do that kind of nursing." So when the time came, and it was right, and I started working as a hospice nurse, I said, "Ok, I'm coming from a background of maternity care." And interestingly found that a lot of the other nurses that I worked with, came from that background as well. I thought, well, this is interesting, I'm sort of doing both comings and goings. I've done Nursing at the beginning of the life cycle and the end of life cycle. So I've, I worked at points on both ends of this line of the life cycle. And then I realized this in time, that wasn't really the way it was. There were an enormous number of parallels between being present at birth, and assisting with dying. And I decided this was more like instead of opposite ends on a line, this is like two adjacent points on a circle. And that's how I begin to think of it differently. Because there were so many commonalities. For one thing, both of them, as I was doing maternity care, it was home in the home. And so is hospice care in the home. And as I thought about that, I realized, well, basically, birth and death, historically, are really not so much medical events. They've been medicalized in the last 100 years or so. But basically, for most of the history of humanity, those has been social events, not medical events. The nurse who's there to help at a birth is called a midwife, which means that she's there present with someone and really a hospice nurse is a midwife to the dying process as well. And both of those things, I think the focus of them is, to gentle the journey, to gentle the journey of a new life coming into the world, and to gentle the journey of a life leaving the world. And I always felt that it was such an honor to be present, when a new life was coming into the world, when a new little baby was born. And I felt very much the same way, when I was present at a desk, I really felt like I was standing on holy ground. 

Whenever I get into conversation with someone who’s been present at numerous deaths, we always hit a point where the conversation gets philosophical. It’s definitely one of the reasons I’m loving doing this podcast.

CS: I'm wondering what you think would change for all of us, if we were to be able to be more normalized about death.

EM: I think there would be a great deal more peace for people about it, if it was recognized as something normal, and if people could be comfortable with the idea that we all die. And, actually, the dying process is, remarkably, it's the same kind of no matter what the physical illness you're dying from is, the actual process of the body slowing down, is very similar among all illnesses, and there are very common things that we see happen. And that's one of the things that we try to do - the hospice team tries to do - is provide information and education to both the patient and the family about, "Well, what happens when you do die? Well, what are we going to see? And what's normal and what's not normal? And what can we do to help keep this person comfortable?" All of those things are things that hospice can provide. And that is enormous comfort to the family and patients, just to know what to expect, just to have it normalized. Most people fear the unknown more than they fear the known. So if something can become more familiar, and you can know what to expect, and know what to do, so that you don't feel helpless, you are more, you are more in - more in control, and feel better about it all.

That sounds so beautiful to me - to get more familiar with death and less fearful, to feel less helpless. We can fight dying up until a certain point, and then we need to shift to acceptance. It’s maybe the hardest and most rewarding work we’ll do.

CS: So we're getting close to time. And I'm wondering if you have other things that you want to bring forward? Personal stories, or just something else that we haven't talked about yet that you want to make sure gets included?

EM: I think it's just the overall belief that I have that Hospice is such a wonderful care program for people at the end of their lives, because it really, it really allows people to die in comfort, and peace, and and with dignity. A lot of times, people at the end of their life suffer an awful lot of indignities. And being at home with a hospice plan of care in place, brings a lot of dignity to the end of their lives, and they appreciate that a great deal. And most people really do want to die at home and that hospice makes that possible, most often. It’s a good thing.

CS: It’s a good thing. That's a great way to express the why of going into hospice.

Edwina fundamentally changed how I see hospice. If you’re ever a caretaker, I hope that you can embrace the shift from hoping for a cure to hoping for comfort. The process of accepting that death is inevitable and within 6 months can be really hard. But let’s not let that difficulty keep us from making the process easier, or keep us from saying all the things we need to say. As caretakers, let’s be open to getting help for ourselves as well as for the dying. Let’s all spread the word that hospice should be accessed much earlier than it usually is, and learn what’s needed to support people dying at home. Especially now, with COVID ravaging our medical care system, we need to rethink our reliance on 911 and emergency rooms. If hospice is available in your area and you need it, call them and see what support is available to you. As Edwina says, I hope we can all “gentle the journey.”

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I hope you enjoyed this episode. If you know someone who you think might benefit from hearing it, please share it with them. Most podcast players have a share button at the top of the screen to make this easy.

As always, you can find the transcript and more at DyingKindness.com. 

Many thanks to Edwina Moldover for the amazing conversation, and to her son for introducing us. The music is by Blue Dot Sessions. Everything else was done by me.

Until next time, I’m Cianna Stewart, and I’m going to die someday, but hopefully not before I finish unpacking into my new office.

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Today’s death reading is an excerpt from “The First Elegy” by Rainer Maria Rilke, translated by Stephen Mitchell.

I selected this in honor of Moldover, the talented musician and instrument maker who introduced me to his mother.

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In the end, those who were carried off early no longer need us:

they are weaned from earth’s sorrows and joys, as gently as children

outgrow the soft breasts of their mothers. But we, who do need

such great mysteries, we for whom grief is so often

the source of our spirit’s growth --: could we exist without them?

Is the legend meaningless that tells how, in the lament for Linus,

the daring first notes of song pierced through the barren numbness;

and then in the startled space which a youth as lovely as a god

had suddenly left forever, the Void felt for the first time

that harmony which now enraptures and comforts and helps us.

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