Transcription of Louise Hurlbutt for the show Comfort, #66
Lisa: I’m very happy always to have with me people who come in that I know from out and about in the community and also to meet people that I don’t know, so I feel like I am in a good place today as I welcome Louise Hurlbutt who is the one that I do know who is an advocate and fundraiser for Hospice of Southern Maine and sitting with her is Arlene Wing, the CEO of Hospice of Southern Maine. I’m really pleased with the work that you’re doing in our community to help families through a very difficult time. Thank you for coming in and talking with me about it.
Louise: You’re welcome.
Arlene: You’re welcome. Very nice to be here.
Lisa: Arlene, I’m going to start with you and ask about hospice. When you and I were talking before, you mentioned that it had been an evolution. You’ve noticed that it had been an evolution over time. People didn’t used to know that much about hospice then they know lot more now. For people who don’t know about hospice still, what is it?
Arlene: Hospice is a program of care that provides comfort and support to people with a terminal illness and provides of various types of health and education to those that are caring for them. The goal of hospice is to help people be comfortable in all ways, not just comfortable with their physical symptoms such as pain, but also to be comfortable socially, emotionally, spiritually, and that’s why hospice provides care using an interdisciplinary team.
The team is comprised of medical-focused professionals like physicians and nurses and hospice aides, but also social workers and chaplains. We always have many volunteers that provide support as well. Volunteers perform different roles in providing companionship and care and respite. When they visit out in the home, it’s, you could think of it similar to what a friendly caring neighbor might do to come and sit with someone or do some tasks for, sometimes something like play a game of cards or just to be there and be a supportive presence.
Lisa: Louise, why did hospice come into your sphere of thinking? How did it become important to you?
Louise: Well, in 2000, my mother passed away at Huntington Common in Kennebunk. We had hospice come in, in the last two weeks to help us all out. She was getting nursing care, but it was the emotional journey that led us to understand death, which often we don’t understand until it’s apparent, the spirituality of it, and just that supportiveness. About a month after Mom passed away, one of the staff came to me and said, “Would you be, you have such a strong feeling about hospice and would you be willing to help me start finding money so that we can build a hospice facility in Maine?”
When I looked into it, I realized that Maine rated next to last in the United States for hospice care and I had moved to Maine from Philadelphia where hospice care was pretty active. It sort of became my journey for my mother to help and we started on this journey in raising money. In 3 years, we raised 3 million and we could make … and then other people just started and then it evolved and it was a very passionate thing for me to do. It was sort of I wanted to get involved in Maine. We had just moved here and it was something that I truly believed in. That was my journey through it. We have wonderful people like Arlene who lead us through it.
In my own journey, I’ve had cancer after we started hospice and it’s a great sort of relief to know that it’s there and that you have a place in the end that’s going to take care of you in a very spiritual and giving family counseling and children and just the help you need. It’s alleviated the fear of death for me. It’s very interesting. Death is very different for everybody. It’s been a wonderful journey in that and to see it grow. If you read in the Portland Press Herald, 75 … in the obituary, 75% of people die at the Gosnell Memorial Hospice House and it’s really like, “Oh my God! This is amazing. It’s so needed.”
When we started hospice, and I think Arlene can address this more, we had to educate the medical community and the doctors and we didn’t have the insurances and all that and that journey in the last 10 years has been pretty incredible for what now is provided in insurance and Medicare. Don’t you think, Arlene?
Arlene: Very much. It’s been quite an evolution. It’s been several years ago now. I think we are getting close to 10 years ago that the Maine Hospice Council got a grant from the Robert Wood Johnson Foundation and part of that grant allowed us to conduct a survey around the state of Maine concerning people’s beliefs about various end-of-life issues. One of the questions asked, “Do you know about hospice?” It really surprised us then because we thought by that time, we’ve made a good amount of progress in Maine and about 50% of people said they didn’t even know what hospice was. There has been a change.
Now, those of us that work in hospice over the last year to 2 we’ve been talking to each other about the change or the shift that has occurred in that one will tell someone what we do for work and they say, “Oh hospice.” It used to be years ago, even more than 2 to 5 years ago that people would say, “Hospice … hmm, what’s that?” and they want you to explain it sometimes. Now, it’s “Oh! Hospice!” They know what it is and they almost always have a story about having received care with us. It’s so different, and because people have experienced what we described the comfort, the sense of not being alone and the support that hospice brings, they’re now beginning to ask for it themselves.
People don’t often realize that they can call hospice directly to request services and then we can take it from there to call their physician for them and do what it takes to make it possible for them to enter into a hospice program. It really has transitioned.
Lisa: Why do you think that people feel so alone when they have cancer or when they have a serious illness? Why do you think that people are so afraid of not being cared for?
Louise: I think there’s a difference. I think the medical community here in Maine takes wonderful care during your cancer treatments while you have cancer. I think all of us who are terminally ill or ill, you know, have this fear of the very end, will I be able to tolerate the pain, will I be able … it’s a frightening thought for a lot of people. I think that when you have that … Of course a lot of us have religious beliefs which help us through those journeys but there’s something extra with hospice, and it’s gathering.
I had a dear friend whose mother was dying in the hospital and they told him that she only had 2 weeks. I said, “You can’t leave her in the hospital. Do you know about hospice?” He said, “No I’ve … I have heard about hospice but I’m really not sure what they do.” I said, “You’ve got to experience it. You’ve got to bring your Mom home to your house.” Let her look out at the ocean. Let your brother’s children, her grandchildren come and be with her and everybody experience the death but experience the death in a wonderful way.
I can remember he made the first step with this physician and got her home from the hospital to his house. The first night, at midnight I got a text with a picture of the grandchildren in bed with the grandmother reading a story, with the grandmother, who yes is dying, but she was still alive. She was still verbal. The biggest smile and the message to me was, “I can’t thank you enough for introducing me to hospice.”
I think people don’t really know that journey. I call it lifting you up, helping the family. Hospice gets you through certain tough times in the end and families sharing again where there might have been some barriers and it’s pretty special, very special.
Arlene: Death comes to each and every one of us. That’s one thing that we all have in common and a disease will progress, death will come, being in hospice won’t change that, but it can make that time much more comfortable. It can bring a team of supportive well-trained expert individuals around you to help you manage with all that’s going on and there is a lot going on. I was struck by Louise’s words when she said, “She no longer felt afraid of dying,” and to me that’s one of the most powerful things and one of the biggest gifts that hospice experience brings to people and families.
I’ve had so many family members say that to me and dying patients say that to me that having that experience changed that for them. When you think about that one of our biggest fears if not our biggest fear being taken down or taken away is very huge because people know they can be comfortable and they don’t have to be alone and it’s a wonderful gift for us to be able to give to others.
Lisa: Do you think that medicine the way that it is set up now where we are trying to cure things and we are trying to look for answers and we are trying to prevent the end from happening, do you think that this has maybe caused some of the problems with dealing with death and dying?
Arlene: There’s always that possibility but I look at it more as we need to become really good at the transition and learn when it’s time to change. One of the things that is another barrier is that often people think of that transition time or that change from trying to cure the underlying disease and changing to trying to keep all of the symptoms under control and keeping the person comfortable. We tend to think of that as going from doing everything to doing nothing and it’s not.
It’s going from doing everything possible to cure the disease to very aggressively treating any symptoms that arise and keeping the person comfortable. It’s different. It doesn’t mean giving up. It doesn’t mean abandonment. It means something different. For people to get good at making that shift I think is what needs to happen because they’re both very important.
Lisa: I’ve seen a rise in the number of medical doctors who are going into palliative care and I think this has become more of a recognized field. Are you seeing that in your work in Maine?
Arlene: Yes. We’re having more and more physicians per their boards become hospice and palliative care certified. Back when I was first working in hospice, there were quite a few years when we only had one in our state that was board certified. We are coming a long way. There is growing interest and for many physicians once they experience that practice if it is something that they’re innately drawn to, they love it. We have had many physicians come to us expressing interest in doing that work with us, which we feel very honored by because the physicians are typically quite a scarce commodity in our healthcare professional realm. I think that is a great indicator that there is a great interest in the work of hospice.
Lisa: Louise, you talked about spiritual aspects of transitioning with your mother and also in your own life. Is it something that you ever felt you could address with your own physician or your healthcare providers or your mother’s?
Louise: I think today cancer is now a managed care disease. We are very fortunate that medicine has allowed many of us to live much, much longer who have had cancer or other diseases. I think maybe 20 years ago it wasn’t, you wouldn’t have discussed it, but today I discuss that very openly. I don’t want it to be prolonged. It’s accepting where you are in your life.
I think Arlene made a really good point. Some people have said, “Oh, isn’t hospice about giving up? Won’t my mother know that we’re giving up on her?” but it’s making her comfortable in the end. There’s no more that the medical profession can do for that individual. It’s taking them into another level. I think when one has spirituality added to it, it really is raising you up, and I like to look at it that way that it is another form of spirituality. Some people wouldn’t but I do. I really am excited to see where the medical care profession is today than 10 years ago on hospice care.
Lisa: Does it matter what type of religious background or spiritual religious affiliation somebody has or family has when they approach hospice for care?
Arlene: No, absolutely not. One of the things that’s very important in the world of hospice is that we want to honor people where they are, for who they are, try to learn what their wishes are and do our best to have those wishes come to fruition in this last part of their life. There would never be any expectation that someone had to be something or believe something. We meet people where they are and honor their beliefs and their ethnicity, and their age and background, and gender, and whatever it is.
One of things that we work very hard to do is learn how to be there. It sounds simple but we do a lot of training around that, where we work to be able to quiet our own agendas and our own thoughts and be present with someone and truly listen and allow them to process with us because when you think about it emotionally, spiritually, socially, people are doing a huge amount of work during this time.
Socially, they’re saying goodbye to everyone they know. Emotionally, people universally experience emotions of all different sorts as do the people that love them. Spiritually, people universally deal with spiritual questions. Things like what did my life mean? Where am I going after I die? For us to have the privilege of being there and helping them through that is very much of an honor to us. We don’t want to get in the way of their beliefs and where they are but simply to be there to support them in that.
Lisa: Louise, you managed to, you said, raise 3 million dollars in three years for the Gosnell House and I know you had a major donor that was very interested in bringing that thing to reality. What do you think it is about hospice and the idea of a hospice house that causes people to want to give?
Louise: Well I think they see a need in the community, number 1, and our major donors in the beginning … I want to correct one thing. I didn’t raise 3 million myself. We raised it, a whole group of us. I did do 1.5 million but it was because of our wonderful donor. I think that it’s a personal commitment too. It isn’t just about the whole community. They understand what hospice is all about. The people that we went to, we didn’t have to sell it. We said, “This is it. We don’t have it in Maine. We need to build this. We need to have this for our community and for you and for everybody as a state.” That really, that was the approach.
I have never raised money before. It was very hard for me to ask but once I got going in and you believe in it, they take it from there. They understand it. People were so generous. I think what really now … it just continues on. You see it in the paper in the obituaries. People who probably would have given money to their alma mater or something you say donations to hospice because they realize how important it is to send funds to it and it just keeps perpetuating itself. We want to do more in hospice care. We want to have more facilities, education facilities, and a bereavement center. It’s always ongoing for fundraising.
Lisa: Yes. I think that’s an important point because I don’t want people who are listening to think oh, we already have a house here. Lots of people are donating. We went from being almost last or last in the nation as far as hospice availability to somewhere in the middle from what I understand but that still leaves us only somewhere in the middle. There’s plenty of room to move and death is going to happen to each of us. How can people learn more about donating to Hospice of Southern Maine?
Arlene: They can call us at 207-289-3640. They can also go on our website and there are many areas of informational or many informational sections on the website and there is a way to make a donation online there on the website as well.
Lisa: The other piece that I wanted to make sure people understand is that there is a huge need for hospice volunteers and there’s a very specific hospice training that people go through in order to become a volunteer.
Arlene: That’s right. We’re always looking for people who are interested in volunteering with us. There are many different ways to volunteer. Some people choose to work with helping patients and families directly. Some like to volunteer with events and special services like our memorial services. Some like to do administrative roles like help with organizing things in the office for example. In order to volunteer, there is a 40-hour training that people would go through that helps to give them the tools and the skills and the understanding that they need to be effective in their role.
Lisa: What you described is this “helping people to transition through the end of their lives.” Are their student lessons that people have learned or have you heard of specific stories that people have shared with you about the types of deeper meaning that they might have found through hospice?
Arlene: There are so many wonderful transformative life-changing stories that we hear and that’s where the reward for doing the work of hospice comes in. I can think of one story that pops to my mind immediately. A man that … back when I was doing hospice home visiting as a nurse myself, and I was managing a program at that time. One of the nurses came in and was saying that this gentleman that she was visiting was in great distress or despair. And this is a spiritual issue. He was saying that he felt like his life had had no meaning, that it had meant nothing.
She knew something about what his wife had told her about his life and what it had meant to her and her children. She asked his permission to tell his wife how he was feeling and he said, “Yes, that was okay.” She shared it and then the next visit, when she went back, he was really transformed. He had gone from seeming to be very anxious and depressed to peaceful and was able to have real healing and change there in his view of himself and his life and come to peace.
Often times the hospice team can help relationships also where they might be a need to forgive or be forgiven to help to process some difficulty in a relationship and I remember another story where often times when people are dying, we have some rules of thumb that we use about how we know when people are getting close to death. One of them is when a person is taking in no food and no fluid. It’s usually around 2 days, around 48 hours that they can last with no intake at all.
We had a patient and she was not taking in anything and it was getting to be a couple of weeks and she was getting really agitated and uncomfortable and the nurse asked the family if they could think of anything that might be unresolved for her that we could help her with even though she was unresponsive and unable to talk at that time.
They said, “Well, there is this relationship with this family member but they are way away, they wouldn’t be able to get here.” We said, “Well, would you be willing to just try if we got that person on the phone and put it up to her ear, even though if she can’t talk and see if that might help?” and they did that, got the person on the phone. That person was willing to talk. Said what they had to say. The patient had the phone up to her ear and then she quieted and died peacefully just a little while after that. So, it was needed to bring resolution and peace.
There are so many stories like that. As a hospice team, that’s where we see healing happen. Yes, the physical body is dying but there’s still a lot that can happen in those other domains and it’s a privilege to be able to assist with that, help someone say goodbye, say I forgive you, whatever it might be.
Lisa: Louise, do you have any words of wisdom for people who might be going through the sort of transition during the holiday season?
Louise: I think it’s really important for families to communicate and talk about death. Death is always hard. Of course in the Christmas Holidays, Thanksgiving Holiday, but the more you talk it out as a family, the inevitable, and I think it’s important to bring children into it. Often, when my children were really young, we didn’t sort of bring them into the dying bed, “Oh! Don’t let the child see it” but now we do and it’s so important for children to understand death and to say goodbye and to understand that loss. I think spiritually it heals. It helps heal and it bonds a family if it can be done.
Lisa: Well, I’m so happy that you’ve taken the time to come and talk with me today and spend time with me talking about hospice. We’ve been with Louise Hurlbutt an advocate and we’ll call you a fundraiser, but mostly I think you’re just an advocate for Hospice of Southern Maine and also Arlene Wing, who is the Chief Executive Officer of Hospice of Southern Maine. I appreciate your time and your willingness to bring this important work to the world.
Louise: Thank you.
Arlene: Thank you very much.
Louise: Thank you.