Carol Schoneberg

Dr. Lisa Belisle:

Carol Schoenberg has been a hospice educator in Maine since 1992. She has served as an end of life educator, bereavement services manager and grief counselor at Hospice of Southern Maine, Maine's only freestanding, not for profits hospice since its inception in 2004. Thanks for coming in today.

Carol Schoneberg:

Happy to be here.

Dr. Lisa Belisle:

The work that you do is what many would consider to be difficult and yet it's your chosen field.

Carol Schoneberg:

It is.

Dr. Lisa Belisle:

Tell me about that.

Carol Schoneberg:

Well, one of the things I hear often is, how could you do that? It must be so depressing. And if I found it depressing, I could never do it and I couldn't have done it for this long. It's often sad, but there's a big difference and it's very, for me, extremely meaningful. It's always been good to help me prioritize what I think is important in life, and it gives me joy to do this work, which sounds strange to a lot of people.

Dr. Lisa Belisle:

How did you make the decision that this would be your focus in your life?

Carol Schoneberg:

I think it found me. I really feel I came to feel that it was a calling, and I often feel I'm sort of embarrassed to say that. It seems sort of pretentious in a way. But I realized looking back over my life that there were things that happened starting around 5 years old and throughout my life that were leading me in this direction. I was the person in my family and my circle of friends that, for whatever reason was comfortable. It wasn't Something I turned away from. I had a friend in San Francisco when I was in my early 20s who took his life. He jumped off the Golden Gate Bridge. And I remember sitting around at the funeral with my friends, my peers, people my age, and how stunned we all were. And it was, for many of us, our first experience with the death of a friend. And there was something about it that really stayed with me in the sense of grief and how people didn't want to talk about it.

Dr. Lisa Belisle:

Why don't people want to talk about grief?

Carol Schoneberg:

It's amazing how many of my clients will tell me they think grief is negative, and they don't want to talk about something negative. They think dying is negative. And part of my role is I hope to be able to help people see that grief is neither positive or negative. It's grief. It's a true emotion that is central in our lives. It happens to everybody, and it's painful. So, of course, we naturally want to turn away from anything that's painful. And. And when someone has experienced, maybe for the first time, the death of a central person in their life, they have never known a pain like that before.

Dr. Lisa Belisle:

When you say that it's something that brings you joy. Tell me a little bit about that, because I think it's easy to make assumptions as to how we would all feel in your situation, but you have your own experience of it, right?

Carol Schoneberg:

It's not joy like the joy I felt when I found out I was gonna have children or the joy I felt when my grandchildren were born. It's a kind of joy in witnessing, for one thing, witnessing people and the resiliency that we are all capable of as human beings. So when I see a bereavement client who I witness them going through their journey, and then at a certain point, our time together comes to an end. And then I might run into them in the grocery store, or I run into them somewhere, and they look full and alive, and they're living their life. And I know how deep their grief was and how the things that we tend to say at the beginning of our grief, things like, I don't care if I go on or not. I don't care if I wake up or not. My life will never be the same, which it won't. That's a true statement, but that doesn't mean it has to be a pejorative statement. And so seeing this capacity for resiliency is, I think, part of why I do the work. And in working with a family where someone's dying and meeting with them, maybe before they decide to come onto hospice. I sometimes do informational visits for families. It's inspiring to meet with a family that is able to speak openly about what's happening. And typically it's because the patient is willing to go there. And so that is very fulfilling to work with that family and then to see a family where they start off not able to talk about it, but it's still coming, death is still coming. They sign on to hospice, and if they have enough time between when they sign on and when the person dies, sometimes there's a transformation that happens. And a family might be able to have healing that they didn't have before or have conversations that they didn't have before. And often it's brought about because the members of the hospice team, social worker, the nurses, everyone that's involved, chaplains, volunteers, they can help in that process of gently guiding someone to a point where they can make that change. So that's very satisfying and fulfilling to see that happen.

Dr. Lisa Belisle:

How does the team help to guide that process?

Carol Schoneberg:

Well, when somebody signs on to hospice, they are saying that they want this interdisciplinary approach to care, and it means that they will let a hospice nurse come in. Hospice, social worker, hospice aide, chaplain, volunteers. And we also have medical directors that work closely with their doctor. So every member of that team is. We like to think of everyone's on the same level. No one's job is more important than the other. And each person, as they're in there working with the patient and family, they are having their impressions of what's happening. It might be that the patient feels most comfortable with the aid. And they might really open up to them in maybe a way that they've not opened up to their family or to anyone else. And they might talk about their fears or their wishes of what they wish could happen before they die. And because everyone on the team is educated, trained on end of life care, they're tuned in to listening for these things that people might say that someone else might miss. So it might be to say, tell me more about that. And then it might be to say, is this something you've talked with the social worker about? Because she might be able to help you have these conversations with your family. So it's that kind of everybody working together, everybody having their eyes and ears open and coming together to see how can we better serve this family? How can we help them the most? So there have been studies done that have shown that if someone can be on hospice for a minimum of 60 days, that it can make a great difference in the way they die and the way the family is able to have some possibility of healing. And it also makes a difference in their bereavement.

Dr. Lisa Belisle:

As someone who has referred patients to hospice before, it is always tricky because there's no way to accurately determine when someone is going to die. It's always just a best guess. And it always feels unfortunate to me when a patient just barely gets into hospice and then they pass away because it feels as if it were a missed opportunity.

Carol Schoneberg:

Yes, there was. When that happens, you know, lots of times we get a patient sort of the 11th hour, and there's not a lot that can be done when you get a patient who maybe you have them the last day of their life. Some people end up at the Gosnell house four hours before they die. And often I will hear in bereavement or in a support group or in individual grief counseling. I wish we would have come to hospice sooner. I wish we would have known about it sooner. And I would agree with you. Yes, it's very hard to prognosticate a terminal illness when somebody. How much time they have left. And yet you probably know. It's the question everybody that's been told they have a terminal illness. How much time do I have? When a hospice nurse gets to the house the first time, how much time do you think he has? It's that piece that most people want to know. Not everybody. Some people don't tell me. I don't want to know. I'm a big believer that, for instance, when somebody is told they have a stage four cancer, and I would say cancer is an illness that is a relative term, is a bit easier to prognosticate because of the stages and typically what is seen. I would hope we reach a point someday, and I hope it's while I'm still here to see it. When a physician and oncologist would have that conversation with their patient when their cancer becomes stage four, to introduce hospice, here's what it is. Let's talk about it. Would you like to meet with somebody who can tell you about it? You're not ready for hospice now, and I hope it's going to be a long time before you are. But this would be the words of the oncologist. But I've learned that educating about it sooner makes it easier for when the time comes to access it, you'll already know what it is. You know the difference it can make at the end of life for you and your family. So I'd like to see that become routine. And I would Say to all doctors, if your gut is telling you this person has a prognosis of probably six months or less, or even if you look at this person and you think, I wouldn't be surprised to hear that they've died in the coming year, that's the time for a hospice referral. And use us, use hospice professionals to help you have language to do that, to be able to have somebody that could come in and, and talk to that patient, that family, if they're open to it once again, you know, that piece of people coming sooner rather than later is really important, Very, very important. The other thing I'm thinking of is there have also been some studies done to show the negative impact of over prognosticating, of giving false hope. And the studies point to it is of no benefit. And in fact, what I see in my work as a grief counselor is it leaves people really angry. You know, if a doctor says because it's hard to say, and maybe they say it because they're uncomfortable, they say, well, I don't know, it could be two weeks, it could be a year. So what that family and patient holds onto, of course, is the year. And then when death comes three weeks later, they are stunned, as people are anyhow when they lose someone they love. But they're angry, they feel lied to. And that is a hurdle for them to overcome in their grieving process before they can even begin to focus on their grief.

Dr. Lisa Belisle:

Because death has, for many people, such a negative connotation. It is something that many people feel uncomfortable talking about at all. And even if you are not someone who has a family member in hospice, you may not know what to say to be supportive of a family that's dealing with the possibility of loss. What type of language do you suggest that people use? What are things that can be said that individuals or families might find helpful?

Carol Schoneberg:

So if I heard you correctly, you're talking about the person who maybe they have a friend or a family member or somebody who you've heard is terminally ill. The thing that we all that I hope people will do is to say something, to acknowledge in some way. For people who are facing the end of their life, one of the common things they feel is a sense of abandonment, often by the medical community and by the people who love them, who they are hoping will check in or be around. It might be to say, I don't really know what to say or do, but I know that I want to support you and I want to be with you. That's a huge thing. It might Be to say, is there something I could do to help you at this time? Depending on where the person is in their dying process, if they're on hospice, it might be to say, is there a project that I could do to help you to complete that might be meaningful for you not to be afraid, which is hard to do. To talk about it, you know, because we talk about death, doesn't make it come any sooner. And that's often what I, when I'm doing education in the community about hospice. That's what I'll say when I'm meeting with a new hospice family. I always say that it's about being present to someone much more than any clever words we might say. And there are ways that we let somebody know that we are present with them. It might be a touch. It might be a hug if they want it. And just to say, I'm gonna. I'll be here for you. Throughout this journey, however long it may be.

Dr. Lisa Belisle:

There are, for some people, unresolved issues. I guess you're laughing and smiling because maybe it's all people have some level of unresolved issue.

Carol Schoneberg:

I think so. I do. Some people, very little. Some people, they live their life in that wonderful way of saying what they feel in the moment and saying, I love you, and saying I'm sorry when they're sorry, doing those things as they go through life. And they're just maybe a family where they're much more open. We say in hospice, the easy part is dealing with the body, the physical body, the pain and symptoms that we, our hospice people, are very skilled at. The difficult part is typically family dynamics. If you have five adult children, rarely are all five on the same page. They have five different relationships to the one who's dying. They don't all have the same relationship. Some may have a particular ease in being present to death, others not at all. Some want to talk about it, some don't. And every bit of that family's dynamics from day one are going to carry into the dying process. You know, we say in hospice, we tend to die the way we've lived, which is what we see. Somebody who's been open and shares everything, they're going to be open and sharing their dying, talking about how they're feeling. And the opposite is true. And the same is true of grief. We only are who we are. We can only manifest in general unless we have a transformation in that way. So that family dynamics piece is really tough. And that's where hospice can be very helpful as well. Hospice doesn't come in and tell people what to do or what to feel. But once again, that sense of, is there something that could be done to help people be able to heal their relationships before they die? Sometimes it happens, and it's very wonderful. Sometimes it happens 10 minutes before death. Sometimes it takes place over the weeks and months, and sometimes it never happens. We have had patients who might have a loved one who they've been estranged from, maybe an adult child, estranged 20, 30 years. And as the social worker is exploring this piece of their story, they might ask them, would you like me to try to locate your daughter? And typically, the person that says, this is what I'm struggling with, will say yes. They might not, but often they say yes. And sometimes the team is able to track down, locate the person with the help of the Internet and everything else we have today. And sometimes the person is when they were called and said, your mother has given us permission to call. She's a hospice patient. She's very near the end of her life and she would very much like to see you. Sometimes the person says no, and it's not ours to judge. Whatever the wounds were may be too great for that person to be able to overcome. And some people have said yes and have come from great distances, had a kind of reconciliation and healing. And very soon after that, maybe within minutes or hours, days, the person lets go and they can die peacefully.

Dr. Lisa Belisle:

Is there a difference between the way

Carol Schoneberg:

that

Dr. Lisa Belisle:

younger people who are dying in hospice and older people who are dying in hospice experience that process?

Carol Schoneberg:

In some ways, no. In that it's more about our type and nature than it is our age. So I see some people who are in their 70s, 80s, 90s, who are able to touch everyone around them, inspire everyone around them as they go through their dying. And I see younger people who are able to do that and those who may not be able to. One of the things, when we have a younger patient and we don't have pediatric hospice, so our patients are generally over the age of 18. We have very, very over our 10 years of the hospice house being open, the Gosnell House in Scarborough, Very few, you know, handful of patients, I would say, in their 20s. And of course, what we see more often with a young patient is often their parents are living. So that's a loss that any parent hopes they never have to hear about or deal with. And as staff, it has a different impact when there's a mother or a father who's there in that room with the person who's dying. And of course, we witness it in the home as well. So I don't know if that responds exactly to your question, but those are some of the things we see regarding the age, ages of people who are dying. There's always the person who's dying, who. Their approach, because it's their nature, is, why me? And then there's the person who's dying who says, why not me? It's going to happen someday. So neither one of those approaches is right or wrong, but it is definitely a very powerful, rich experience as a hospice worker with that person who is why not me? And also who is able to share their dying process. That's how we learn. You know, I certainly learned most of what I feel I know or understand through the people I've worked with.

Dr. Lisa Belisle:

Have you found that people are very similar in the way that they die or that they are very different in the way that they die?

Carol Schoneberg:

I think they're quite different. You know, some of the deaths we see are very peaceful, very quiet. A person might just sort of slowly shut down. And obviously this type of a death is really relative term, easy. But it is the least painful, in a way, for a family to witness and watch. We all hope for a peaceful death for ourselves, for the people we love. Some people have what I would think of as a more traumatic dying experience based on their illness. You know, they might have more things that as the body gets near death, you know, whether it's more symptoms that manifest, some symptoms that might be very distressing for a family to witness. Hospice does everything it can to help manage and control those symptoms. The nurse will also help prepare a family if they have a particular type, let's say, of cancer, that this could occur so that they might not be as shocked. We see people who are fighting death until their last breath, I would say, and people who have made peace and have, if you will, acquiesced to death. We see people who might have a smile on their face when they die, who look beautiful and peaceful. They might even have a glow and. And others that have been a much harder death.

Dr. Lisa Belisle:

What do you think it is that people fear most about dying?

Carol Schoneberg:

Fear of the unknown.

Dr. Lisa Belisle:

That's pretty straightforward.

Carol Schoneberg:

That's, you know, if I had to just. If I just had to reduce it to one sentence. There's a difference, too, between fear and sadness. You know, I think the fear largely. I always think of Woody Allen who said, I'm not afraid to die, just to want to be there when it happens. And I think there's so much truth to that. Many people, if I have an opportunity to ask them, what's the scariest part about all of this for you? You know, typically what people say is fear of dying in pain, fear of dying alone, and fear of being a burden to the people I love. Those are the kind of universal pieces that people talk about with fear. The other thing that a dying person is, once they get that terminal diagnosis, no matter how much time they have left, that I find people wrestle with is sadness of leaving behind the people they love. It always comes down to that. And people who might say, I can do this, but I can't imagine leaving my children.

Dr. Lisa Belisle:

Are there ways that hospice supports families once an individual has died?

Carol Schoneberg:

Yes, hospice. One of the things that distinguishes hospice care from a regular medical model of care is the family is the unit of care. So we very much are there to provide care and support to the patient and the family. After the patient dies, we provide bereavement support to the family, anyone who wants it in the family for one year following a death. It's part of the Medicare guidelines and regulations. So any hospice program in the country is required to offer bereavement support. What that support looks like varies widely from program to program. We're very proud of our bereavement program in that we offer individual grief counseling during that year. We have between eight and 10, eight week support groups every year that are run for an hour and a half each week for eight weeks. They are generic groups, so anyone over the age of 18 who has lost a central person in their life can attend. It's open to the community as well. And our individual grief counseling is open to the community as well. So it's no cost. Sometimes a doctor's office will call me and say, I met with one of my patients today and his wife died some months ago and he was crying and is really struggling. Is that somebody that you could see? And then, yes, we will and we do. Not everybody wants bereavement support. We also part of our services are we do a monthly mailing with some bereavement literature that we mail every other month. And with that packet, they also get notices of all the groups that are happening. When I was saying not everyone wants formalized professional support. We know that around 40 to 50% of people will heal well on their own. And typically it's the person who is. Has a strong support system. Really important. They might be connected family, friends, workplace, faith, community, and somebody who is the person who tends to approach their grief rather than avoid it. And there are people that a very small percentage of people might end up having what we call a complicated grief where they might be best served. Working with someone who specializes just in complicated grief to help them be able to it's a I think a simple way of thinking of it is somebody who gets extremely stuck in their grief process and isn't able to really begin to move forward in their grief. And in my view, our grief doesn't go anywhere, it just hangs out. Whether it's for a few months or 50 years. An unreconciled grief or a grief that one isn't able to actually mourn does not diminish and it has a really negative impact on our lives. I think of it as kind of a life half lived.

Dr. Lisa Belisle:

I've learned a lot from our conversation today and I appreciate your coming in and sharing your insights and also all the work that you have been doing for decades, really. I've been speaking with Carol Schoenberg, who has been a hospice educator in Maine since 1992. She has served as an end of life educator, bereavement services manager and grief counselor at Home Hospice of Southern Maine, Maine's only freestanding not for profit hospice since its inception in 2004. Thanks for coming in today.

Carol Schoneberg:

You're welcome.