Navigating Grief with the National Partnership for Healthcare and Hospice Innovation

Show Notes

August 30th is Grief Awareness Day, a time to educate others on grief, create space for loss, and prepare ourselves and loved ones for this difficult, yet, inevitable experience. Joining us to explore some of the misconceptions around grief and the growing effort to support patients as they navigate their journey into the final stage of life are two experts in end-of-life care.

Tom Koutsoumpas and Carole Fisher lead the National Partnership for Healthcare and Hospice Innovation, a membership organization dedicated to innovating effective models of palliative and hospice care that centers the patient and their families. During our chat, Tom and Carole share their unique insight and lived experience with hospice care that drives their incredible advocacy work.

Episode Transcript

Adina Lasser:

Welcome to This is Growing Old, the podcast all about the common human experience of aging. My name is Adina Lasser and I’ll be your host. There’s no easy way to process grief. Grief is unpredictable and uncomfortable, sometimes messy and always painful. We’re bound to experience grief many times in our lives and more often as we grow older and witness the health of our loved ones’ decline, so why not prepare for it?

Joining us today are two guests who have made it their mission to improve the palliative and end-of-life care experience, aiding families and patients with the transition into a comfortable and dignified last phase of life. Carole Fisher, president of the National Partnership for Healthcare and Hospice Innovation, is a relentless advocate for health, equity and social justice. As president of NPHI, Carole rallies more than 100 not-for-profit organizations around transformational innovation in end-of-life care.

Tom Koutsoumpas is the CEO and co-founder of NPHI. Like Carole, Tom is committed to innovating advanced illnesses and hospice and palliative care. Tom is a prominent leader on issues related to Medicare, elder care, advanced illness, and hospice care, with a career that spans several decades. Carole and Tom, thank you both so much for joining us.

Tom Koutsoumpas :

Oh, thank you so much. It’s great to be with you.

Carole Fisher:

Thank you, Adina. We’re looking forward to this. Thanks for having us.

Adina Lasser:

Absolutely. We are too. I’ll go ahead and jump in with our first question, which is, I think part of the reason that we’re gathered together today. August 30th is Grief Awareness Day, which is a time to educate people on grief and create space for loss. Can you tell us more about the role of end of life care in preparing a patient’s family or loved ones for the grieving stage?

Carole Fisher:

It’s still wonderful that you’re acknowledging and recognizing Grief Awareness Day, it’s such an important day. I’ll kick off by saying that there’s this misconception often about hospice and palliative care that it just benefits the patient. But in fact, hospice embraces everyone in the family. It really helps caregivers and supports them. In hospice care, it’s not just addressing someone from a medical perspective, but it’s helping people from an emotional perspective and a spiritual perspective. I say all that because I know Tom and I like to say with all the things that are challenging in healthcare today, hospice and palliative care is really what’s right in healthcare. That includes the commitment for bereaved. What people often don’t realize is that family members, after their loved one passes away under the care of hospice, those family members are entitled to support for one year of following the death.

That’s really important because grief, as we know, comes in many different stages and forms, and it’s not just a one-day, a one-month, a two-month occurrence. In fact, it’s often more than a year. But we’re here, our members are here to support people who’ve lost a loved one, and we do that in a couple different ways. We do that in individual support settings, we do that in group support settings, just many different ways to help support a family and a loved one. But Tom, I don’t know, you have anything you want to add at that?

Tom Koutsoumpas :

Yeah. I would just add as well, Carole, I think it’s important to know that we also provide that support, not just after the patient’s deceased, but ongoing during the process. Very oftentimes, people begin grieving almost immediately, and particularly if they’re the caregiver and as they go through that process, we’re there to support them all during it. That kind of support I think is very important and helpful to families that have a hard time dealing with it, that are struggling as they are providing the care and support as the caregiver, so we’re there from the beginning, as Carole said, for a year after even, so it’s a long period of support, which is really critical.

Carole Fisher:

It’s an excellent point too, because Adina, what you might be interested to know is that our members, we have a hundred plus members, hospices throughout the country, and they go above and beyond in providing that support, so they often find themselves honoring special wishes that their loved one or a patient has, really supporting the loved one of the people that are grieving. That might look like, gosh, we had a patient once, I know there’s a story about they wanted to see their horse one more time, and that hospice found a way to bring the horse to that patient and spend time petting and touching the patient. It was such a lovely experience. I mean, there’s just tons of examples of weddings that happen for family members and they have a wedding in a patient’s room, whether that’s at home or an inpatient setting, just to make sure that that loved one can attend. I don’t know, Tom, what do you think? So many wonderful examples.

Tom Koutsoumpas :

There are so many. Another example is our children, supporting children who have lost parents or lost a family member and really creating that support for the child, which is so critical because they often are not just grief, but emotionally really distressed, so it really spans the gamut in the ways that we support people through the grief process.

Carole Fisher:

In fact, many of our members offer grief support camps during the summer.

Tom Koutsoumpas :

Yeah, that’s right.

Carole Fisher:

Yeah, for children, and it’s just wonderful that children have a place to come together and to know that they’re not alone. So often people just feel alone, especially children, so they come together as groups and do therapeutic and fun activities to help process that grief.

Tom Koutsoumpas :

The only benefit in Medicare that actually requires that sort of support, and I think that’s important to note as well. When the Medicare hospice benefit was designed, it included incorporating grief support, grief counseling, included having a social worker and a counselor on your care team as well, and all of that’s part of the requirement, and that’s really a very distinguishing factor for the benefit within the Medicare arena.

Adina Lasser:

I know that you both work so hard and it sounds like you make a huge difference in people’s lives, and that’s fascinating to hear about Medicare and maybe we can dive into that a little bit more later in the podcast. I did want to ask, Tom, you shared recently in The Wall Street Journal that a personal experience with death led you to this work. Can you tell us more about that, if you’re comfortable, and what being CEO of this organization means to you?

Tom Koutsoumpas :

Oh, absolutely. Thank you for that. Well, yes, I think personal experience drives so much of what we do and the passion for all of us. At a very young age, I was a staff member in the United States Senate for Senator Birch Bayh from Indiana. Senator Bayh was a very important senator and was at the time, authoring two constitutional amendments to the United States Constitution. He and his wife and family were very close family friends. We were originally from Indiana and my family moved to Washington very early on at my age, and I began working just out of high school and then all through college, I went to Georgetown University, worked in Senator Bayh’s staff for about 12 years. During that time, I became a health aide as one of my responsibilities for the senator. During that course of that time, his wife passed away at a very young age. She was 47. She had gotten breast cancer at age 42 and lived about five years.

Now, as I’m older and I think about a 42-year-old woman getting breast cancer, beautiful woman, just extraordinary, beautiful inside and out, and was very close to me. She was the first person that I had ever been close to that had passed away, and that experience really drove my interest in end of life care. It was interesting and sort of simultaneous to that, so she actually passed away at the National Cancer Institute as part of NIH, and she was hooked up to all sorts of lifesaving things and just every kind of thing that they could provide to try to extend her life, none of which was working. Frankly, it was a horrible death because she was isolated in a hospital room, without her family around her, except for her husband. Her son and I were actually offsite when she passed. We actually heard about it. This is interesting. She was the wife of a United States Senator. We heard about it on the national news. We were sitting watching the national news and CBS came out with a bulletin and said that Marvella Bayh had passed away from cancer, so the whole experience was just extraordinarily awful.

Very sort of simultaneous to that time, there was a lot of information flowing from the UK to the US, to our Department of Health and Youth Services about the idea of hospice care, and that propelled me to get interested. The person who was actually coordinating that was someone that I knew, a former congressman from Palm Beach, Florida who they used to call Mr. Health here in Washington. He was such a driver in healthcare reform. He called me and said, “Marvella’s death was so traumatic for you, and I know how interested you are in the whole system or lack of system that we have. Would you be interested in working with me to develop this concept from the UK in putting together a hospice benefit in the US?” That’s how I got involved, and that was the beginning of which I’ve been involved ever since. But it was that personal passion that led me to we can do better and we can make this something that families can experience with their loved ones, not isolated in a hospital room with no one around, and that’s just been the driving force for me.

Adina Lasser:

When you were working on that, did you participate as the health aide or in a different capacity?

Tom Koutsoumpas :

I left the Senate in my capacity in the Senate. Senator Bayh, he left office in 1980, and so I went over and worked for the law firm, which is a law firm in Washington called Hogan & Hartson law firm, and they had been tasked by the Department of Health and Human Services to put all of this together, and so I worked directly for the firm that then worked with the Department of Health and Human Services. I think there were 26 pilot sites where we were testing the idea of the hospice care benefit.

A lot of our work began in Florida, which was the first state that had a state hospice licensure law as well, so 26 pilot sites. One of them happened to be here in Washington, which is Capital Caring. At the time, it was the Hospice of Northern Virginia. I ultimately went on to be the CEO of Capital Caring Health here in Washington many, many years after, but they were one of the original pilot sites. They tested the concept. It was successful, just overwhelmingly successful. As a result, then the benefit developed and grew and now, of course, about half of Medicare beneficiaries participate in hospice at the end of life.

Adina Lasser:

That’s incredible. Carole, I know you’ve also dedicated your career to addressing end of life care issues. Can you talk a little bit about how you got into it and then how this field has evolved since beginning your journey as an advocate?

Carole Fisher:

Yeah. I spent my career working in not-for-profit and for-profit settings, and my background’s actually in social work, Adina. I realized, I don’t know, 20 some years ago that I wanted to make sure that I was doing meaningful work. If I’m going to get up and make contributions every day, then they should be of purpose, and so I joined Nathan Adelson Hospice in Las Vegas and within a year, became their president and CEO. It was just such an honor to be at the helm of such a fine organization and now have the privilege of serving under Tom’s leadership as president for NPHI. It’s just been a great journey, but we’ve seen so much change.

I think, Tom, when he created this benefit with some folks, never expected the kind of growth and the tremendous now what we see as profiteering of the benefit. Things have really changed a lot just in my what? 20 some years of being in this part of healthcare to Tom’s 40 plus of being in this part of healthcare. Just significant change, and some of it’s very disappointing. We’re looking at business models that may not be consistent with best practice for the patient and their loved ones and making sure that their grief is supported fully. It’s been an incredible journey, but we’re certainly faced with some disappointments today, aren’t we, Tom?

We have one chance, one opportunity to help someone die well.

Tom Koutsoumpas :

We are, indeed. I think as you said, Carole, it’s been an incredible journey and certainly so many good things, so many people have had the opportunity to be cared for in the right way at the end of life. Like anything, as it grows, you need to make sure and address its growth issues. I think that’s where we are at the point in the context of timing with the benefit. It has grown, developed, and now we’re looking at how do we address some of the growth issues? How do we make some changes that will make sure, and our goal at NPHI is to make sure that the benefit is provided in the highest quality way that patients and families get all of the kind of care that we originally envisioned and to make sure that that continues.

Adina Lasser:

Well, and where do you think those kind of downgrades are coming from? If you want to, we also have a question about the congressional work that NPHI does, and I think that might all fit together, so I’d love to open it up to discuss that as well.

Tom Koutsoumpas :

Yeah, I think the biggest issue, like so many in our lives, it’s profiteering and money. I think that there’s been such a growth in the number of providers because they recognize that if you look at the demographics, the number of aging people, the aging population is growing dramatically. Obviously the population that will need hospice care is growing dramatically, so the business opportunity from their perspective is quite positive. That has really driven so much of the concerns that we’re seeing and the kinds of manipulation of the benefit to make excessive profits as easily as possible, and that’s what we’re fighting hard to stop and to protect and make sure that particularly our not-for-profit community-based programs thrive into the future and provide that highest level of care and that we stop this profiteering. That’s really what’s striving in.

Adina Lasser:

Carole, did you have any thoughts on that?

Carole Fisher:

We have one chance, one opportunity to help someone die well. There are no do-overs, and so it’s really important, and our members are so committed to our hundred members, we care collectively, gosh, what? For 60,000 patients each and every day. Not just hospice, but palliative care too. Our members are so committed to doing the right thing at the right time for the right reasons and making sure that we’re always paying attention to loved ones, back to the purpose of this podcast about grief and paying close attention to that. Anybody that works at the bedside is an amazing human being, so if they’re working for a for-profit or not for-profit, we think the world of people who help people at the bedside. But the business models are different, and we’re working really hard with our team and educating on the Hill to make sure that there is a clear understanding that mission-driven care really puts people over profits and that that commitment will always be honored.

Tom Koutsoumpas :

Yes.

Adina Lasser:

Absolutely. Choosing end of life care for a loved one, going back to that grief aspect that you mentioned, it’s never easy. What is your organization doing to support families and making this incredibly difficult decision?

Carole Fisher:

Well, we have many resources available, and I would suggest that people can come to our website, it’s hospiceinnovations.org. Certainly reach out on our toll-free number, if they’re looking for help. That’s 844-438-6744, and we have tools and resources to help people make good decisions. But it’s a critical time when you’re making a decision for hospice and end of life care, so asking good questions about expectations in terms of availability 24 hours a day, seven days a week, sometimes asking someone else, friends and family if they know of that hospice is really important. Looking for their length of time that they’ve been providing the service, I would think is really important to weeded out some of the players that come in and just open up to sell and then they’re only there a couple of years.

Tom Koutsoumpas :

Certainly all of our colleagues will do whatever it takes to support a family who’s trying to make the decision. I think once they reach out to us, we can immediately, and we do immediately not just respond, but really surround them with information, with the opportunity to ask questions. This was just an extraordinary event that occurred in my life just a few weeks ago. I had this wonderful young couple who contacted me and said that their father had had a stroke and was debilitated and was really thinking that he needed hospice care. He was in a rehabilitation center, but it wasn’t going well, and he was really declining, and they were just lost. They said, “We really just don’t know what to do.” His wife was not well as well, although she was living at home, and so it was hard for her to make any kind of decision. They said, “We’ve just never engaged in anything like this, and we’re stressed and it’s really awful.”

I got with our chief clinical officer, and she met with them, walked through all of the things that we could do to support them, and they called me about two or three days later in tears and said, “Nobody was helping us during this process until you came along, until we got in touch with you.” Not just me, but my organization, “and your colleague was a lifesaver, and the father enrolled in hospice and they’re now caring for him.” It made all the difference in that family’s world, and there were three brothers and sisters, and they were all young, and they were all really distressed. And in the middle of all of that, the mother died of an aneurysm. All of this within about a 10-day period. It was just one of those heartbreaking stories that you almost can’t talk about, but I’m really proud of our hospice people because they did what they needed to do, which is they just took over, they surrounded them. They ultimately are being cared for now in a way that they said they’ve never been cared for.

I think that’s what each and every one of our members at NPHI do, don’t you, Carole? I mean, it’s a normal thing for us. There’s probably not a week goes by that someone doesn’t call and want to talk about a referral. How do I get help? Who should I call? That’s just an ongoing part of what we do, so answering your question about how we support, all of our colleagues do that throughout the nation, and that really means tremendous amount to families, obviously.

Carole Fisher:

We hear a common theme, our members hear a common theme, and that is after a family chooses hospice, one of our members support, the family will often say, “I wish I would’ve reached out sooner. I wish I would’ve known about you sooner.” It’s just a common, common, right? I see you smiling, Tom. It’s just a common response. Yeah.

Tom Koutsoumpas :

It is. It is. It’s the number one response we get. Oh my gosh.

Carole Fisher:

Yeah. If only I would’ve known.

Tom Koutsoumpas :

Yes.

Carole Fisher:

Our members really love being of service, and they’re always available 24/7, and we’re here to support and it’s very common that Tom gets a phone call like that, I get a phone call like that, all of us do.

Tom Koutsoumpas :

Yes,.

Carole Fisher:

It’s just always a privilege to help others.

Adina Lasser:

Well, and I’m thinking for a lot of people, hopefully, this is something they go through very few times in their life, and just to have someone experienced in their corner and helping them out, I’m sure makes such a huge difference.

Tom Koutsoumpas :

Yes, absolutely.

Adina Lasser:

Could you talk about some of the biggest misconceptions about hospice and palliative care and maybe even the difference between the two for some of our listeners that might not know?

Carole Fisher:

Well, one of them. Oh, you go, Tom.

Tom Koutsoumpas :

No, no, go ahead, Carole. You’re up.

Carole Fisher:

Well, one of the big misconceptions is that hospice hastens death, and it just doesn’t. What were you thinking, Tom?

Tom Koutsoumpas :

The same thing. That’s the first response that I always have is it’s not giving up. It’s not hasting death. In fact, it’s just the opposite. We see and there are clear statistics that show that when people are under hospice care, they live longer, they are pain-free or try to be pain-free, they have the emotional support, the caregiver has support, so all of the kind of things that we do actually extend life, and that’s a very common part of hospice care. It’s not at all about giving up. It’s about living the best life you can through the end of life, and I think that is the biggest misconception.

Carole Fisher:

Yeah. Another one is that you can’t sustain and keep a relationship with your primary care physician, and that’s just not true. You very much can. We respect those relationships, and you’re not asked to give anything up in terms of a relationship with your primary care doc.

Tom Koutsoumpas :

Well, and in fact, if during the course of treatment of support, you decided it wasn’t what you wanted, you can certainly leave as well, so that’s another misconception. Well, if I choose hospice, then I can’t do anything else if I wanted to, and that’s not true at all either.

Carole Fisher:

Yeah. Another one is that hospice is a place, and it’s not. It’s a philosophy of care. What’s wonderful about hospice is we go to wherever that patient is. If that patient wants to be cared for in their actual home or someone else’s home or a nursing home, wherever that patient resides is where our members provide that care. Our members provide care in prison systems and sometimes for homeless, so wherever that patient resides, we’re willing to go.

Tom Koutsoumpas :

We often do have inpatient units in addition to our home care. The great majority of care is provided, as Carole said, in the home, wherever that may be, and then we do have for very difficult cases to manage where there’s really pain and symptom management is challenging, we have inpatient units as well, but the great majority are home.

Adina Lasser:

I like what you said, I thought that was fascinating about, it’s a philosophy. Could you talk a little more about what that philosophy is and when it might make sense for some patients?

Carole Fisher:

All right, which one’s going? Go ahead, Tom.

I think that philosophy is what drives our passion.

Tom Koutsoumpas :

The philosophy is really comprehensive care for the patient and the family. When we built the benefit, it was really important that it be provided by an interdisciplinary team and that you have a team, a doctor, a nurse, social worker, psychosocial, spiritual support, the only benefit in Medicare as well, that has spiritual component, that’s a part of it, and the use of volunteers. All of that was designed to create a team that would not over-medicalize your care, but humanize your care, and that’s really what’s important. It’s looking at the patient as a person and addressing physical symptoms, psychosocial symptoms, family dynamic issues, all of the above to make the end of life as good as it can be. I think that philosophy is what drives our passion. It’s to make sure that the person and their family are embraced, are surrounded by care and love, and I think that is the extraordinary philosophy.

Adina Lasser:

Carole, anything to add there?

Carole Fisher:

No, I think Tom said that beautifully.

Adina Lasser:

Yeah. This just sounds amazing, and I know that other organizations and members of the community are going to be really interested in getting involved, and I know you mentioned a couple of resources for families as well. You mentioned that NPHI is a home to over a hundred not-for-profit community integrated hospice and palliative care providers and we’re counting up. How can our organizations and advocates become members of NPHI and what can we do to help and get involved?

Tom Koutsoumpas :

Carole, you want to take that?

Carole Fisher:

Yeah. Well, we’re always interested in mission-driven, like-minded hospice and palliative care providers, and they can reach out to us and apply for membership. We also love working with organizations that are complementary, so we have relationships with the American Heart Association, the American Lung Association. We work with the Hospital Association. Tom has great partnerships with the AARP. My gosh, the list goes on and on, whether it’s CAPSI or I don’t, right? The list is endless.

Tom Koutsoumpas :

No, no, absolutely. Yes. Anyone interested, email us or call us. We really always are excited about the opportunity to work with like-minded providers, like-minded organizations that share the same philosophy or the same approach to care delivery, and we would really welcome that opportunity.

Adina Lasser:

Wonderful. All right. Well, this has been amazing. I’m going to turn to our closing questions that we like to ask all of our guests. The first one, and Carole, I’ll start with you. When you were a kid, what did you imagine growing older would look like?

Carole Fisher:

Oh my gosh. Well, here I am, growing older. My family instilled a very pay it forward, generous spirit and taking care of other people, so I have spent my entire professional and personal life doing that. It’s just a privilege today to be part of helping people die well and live well up until the very end of their actual physical life, and then supporting people during their stages of grief. Yeah, I think I’m living my dream of what it’s like to age well. How about you, Tom?

Tom Koutsoumpas :

Yeah, no, I think that was a great answer. I think the same way. I think first of all, sometimes you have to pinch yourself to think you’re actually aging because I still feel as though I’m a 20-year-old and I enjoy that. But I also think that with that, with the aging has come the wisdom, and I think that wisdom helps you to create a balance for your life. Certainly from my perspective, like Carole just described, has sort of driven me to work in the field that I’m working in and being able to do what I can do to make a difference in the lives of others. I think as I’ve aged, I think it’s happening the way I sort of envisioned it and I’m enjoying it, and I just appreciate the opportunity to keep providing that kind of support to others and hopefully, will for a lot longer as well.

Adina Lasser:

Yeah, absolutely. Finally, what do you enjoy most about growing older now? I’ll let either of you-

Carole Fisher:

Oh gosh.

Tom Koutsoumpas :

Well, I think that wisdom that we’ve gotten from aging helps us to lead a more balanced life, maybe being a little bit smarter about things, but also, the experience that I’ve had during my life has given me the opportunity to, I think be more open, more caring, and so many good traits have come as a result of aging that it’s made me the person I’m today, and hopefully, that is an important part of the aging process that is a good part of it.

Adina Lasser:

Carole, anything from you?

Carole Fisher:

Well, gosh, I’m actually hitting Medicare age on Wednesday, so I’m turning 65.

Adina Lasser:

Happy birthday!

Carole Fisher:

Yeah, I know, right?

Tom Koutsoumpas :

Happy birthday.

Carole Fisher:

Right on your podcast. I think that as I’m aging, what I’m realizing is that it’s really important that we own our story and that we stay true to ourselves and true to our loved ones, our families, and our close friends and that it’s okay to say no, it’s okay to set boundaries for yourself. I’m enjoying this part of my journey in my life because I am probably more confident and feel a little bit more capable than I ever have, so it’s a great question, though.

Tom Koutsoumpas :

It is a good question.

Adina Lasser:

That’s incredible to hear. All right, well, I’m going to wrap things up, but thank you both so much for joining us and for the incredibly important and meaningful work that you do. We really appreciate you being on the podcast. For everyone listening, thank you for listening to This is Growing Old. If you’re enjoying the show, please subscribe wherever you get your podcasts, and if you’d like to learn more about NPHI, be sure to visit them at hospiceinnovations.org. Have a wonderful day.