FAMILY COMES FIRST EPISODE 504 HOSPICE

 

Transcript:

FAMILY COMES FIRST EPISODE 504 HOSPICE

APPEARANCES IN ORDER:
VINCENT J. RUSSO
VICTORIA ROBERTS-DROGIN
MAUREEN MCGUIRE, RN
MICHELE DAVIS, LMSW
JAMES BROVEN
MARIBETH MCKEEVER, LCSW-R
CAROL STEGER
TRACEY RESSA
MARY ELLEN POLIT KERIANN PAGE, MD
FR. STANGANELLI

MR. RUSSO: Welcome, everyone, to Family Comes First. I’m Vincent J. Russo.

MS. ROBERTS-DROGIN: And I’m Victoria Roberts-Drogin. Thank you for joining us today. It’s incredibly challenging and painful to know that a loved one is dying. There are so many emotions and so many questions, especially when family members are not sure how to act or even what they should be doing.

MR. RUSSO: This is where hospice comes in; a place where caring and loving professionals can help families navigate one ‘s end of life journey, as we know it. These are angels, a Godsend.

MS. ROBERTS-DROGIN: Yes. As we explore today, the profound care provided by hospice, we will meet experts from Good Shepherd to discuss the choices facing individuals and their families.

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NURSE MCGUIRE: Hospice is a team approach, so the employees of Good Shepherd Hospice, whether we ‘re nurses, social work, pastoral care, home health aides, each bring – and volunteers, each bring in their own discipline, their expertise and their time to make it easier for the families. I think a big thing that all of the staff does is, is we listen, and we provide the families with that time to be heard, as well as the more concrete care that we give; symptom management, pastoral care, providing the spiritual care, social work, providing that kind of emotional support. MS. DAVIS: Patients that come into hospice have a diagnosis of six months or less. They have to meet the criteria to be put on the program. It’s very different from a home care-type program. We go in and we really evaluate and assess and educate the family on what to expect.

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MR. BROVEN: Shelly was a very bright person, had a great smile. People loved her. I tend to think that she thought more about other people than herself. We were very happily married until Shelly passed in 2013. Shelly told me that she had a bout of breast cancer in the early 90’s, and we made a pact that if anything did happen, then we would stand by each other, and her cancer was in remission for many, many years. In fact, so long, I literally forgot about it. But it reappeared in the year 2011, and from then on, it was the long grind of chemo, which she handled beautifully. To compound her illness, she had a stroke on November the 1st, 2012. The summer of 2013, when she suddenly, her both hips broke through the chemo treatment, her bones had clearly been weakened. Towards the end of August, I was told that she – – – that the rehab center really could do no more for her. That ‘s when I became face-to-face with hospice care.

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NURSE MCGUIRE: Good Shepherd Hospice also cares for patients in community. We call it community-based hospice, and they ‘re cared for in their own home. As such, they have to have a primary caregiver. It’s usually a family member or perhaps a group of friends, but people that are willing to be the 24-hour, 7-day a week presence in the home.

MS. DAVIS: There ‘s criteria in all different levels of hospice. At the inpatient center, you need a symptom to be managed, and then we have a community hospice-based program that ‘s in the home of the patient, or it could be actually in an assisted living or in a skilled nursing facility.

MR. BROVEN: The great thing to me was that she was going to be at home, and she was there for the last month. It was a wonderful experience for her, for me. She was with her hound dog, Jay Jay lovely Springer Spaniel, family, friends could visit and it was a time where I could see that she enjoyed being there rather than at an institution. I was very impressed with the nurse and the aide. The nurse, Diane. One thing I shall always remember, she said, treasure every minute you have Shelly with you and that was just wonderful advice. Very simple, but just wonderful.

MS. MCKEEVER: I strongly encourage people to not only recognize but to embrace the fact that grief is a very anticipated, very normal, yet very difficult part of a condition to get over, and it certainly is not about weakness. It’s about loving somebody and losing somebody.

MR. BROVEN: We had a lovely celebration of life party at her home. Over a hundred friends came. People said to me, it was Shelly ‘s party. And you can’t ask for more than that.

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MS. ROBERTS-DROGIN: We have just seen one very powerful story, and now we have the opportunity to talk with Carol Steger and her daughter, Tracey Ressa, who will share their perspectives on how hospice helped them dealing with their grief.

MR. RUSSO: Welcome, and thank you so much for coming today.

MS. ROBERTS-DROGIN: Thank you, both.

MR. RUSSO: And our condolences on the loss of your husband. married forty-nine years? I know you were married forty-nine years?

MS. STEGER: Forty-eight.

MR. RUSSO: Forty-eight, that’ s a long time. here. So we appreciate your being I would open with just having you share your story?

MS. STEGER: He was diagnosed, I believe it was, I want to say – – – ten, probably twelve years ago with chronic lymphatic leukemia, which is CLL, but chronic means it’s manageable, or so they say. But they give you about a ten-year spread, and that ‘s about how long he had. The first eight years were pretty good. He never needed chemo. He never needed anything. He didn ‘t even know he was sick, but then the last year, before last year I he started going with the chemos, and that sort of held it in check, but then it started getting out of control.

MS. ROBERTS-DROGIN: Right. And then?

MS. STEGER: Last year, in I think it was April, he couldn ‘t breathe, but it was back in December before that April that he was telling the doctors all the time that, ”I can’t breathe, ” and they kept saying, ”Oh, it’s a cold. It’s a cold. ” And I’m saying, why don’t you do a CT scan to see what was going on in the throat, because my husband was having such difficulty. He didn ‘t have a runny nose, nothing else. Well, to make a long story short, when April came around, I had a run into the hospital real fast, because he was gasping for air, and when they did do the CT scan, his breathing tube was down to the size of a swizzle stick, and they had to do an emergency trachea on him.

MR. RUSSO: Unfortunately, he got to a point where you moved from receiving care to hospice care which is care too, palliative care, care to make sure he was comfortable, and care that would allow him to spend time with family, and the hospice program came to your attention.

MS. STEGER: Yes, but he wasn ‘t in hospice MR. RUSSO: For very long, right?

MS. STEGER: No, no. He was getting intensive care at the hospital.

MS. ROBERTS-DROGIN: How did you become aware of the hospice program?

MS. STEGER: He kept asking the nurse, one of the nurses there, about hospice. And in St. Charles, the hospital he was in, the Good Shepherd is right next door.

MR. RUSSO: Right.

MS. ROBERTS-DROGIN: Right.

MS. STEGER: So we just wandered over there one day, and we walked in, and I couldn ‘t believe how beautiful it was and how serene it was and I was like, oh, my God, he has to come here.

MR. RUSSO: Tracey, daughter, you know seeing your dad in that condition I’m sure was very hard.

MS. RESS: Very hard. Very hard to watch him suffer the last year of his life.

MR. RUSSO: But I know you must have, as a family pulled together.

MS. STEGER: Yes.

MR. RUSSO: And tried to manage how best to take care of your dad for that period of time.

MS. RESSA: My father didn ‘t want to end up in the hospital. That was one of his biggest concerns. He, actually begged to leave the facility and come home and spend his last days, if that was going to be the case. And it wasn ‘t. We got lucky, eventually we were able to move him, with his wishes he was not consciou at the time, but we were able to get him into the hospice care right next door from St. Charles and just the facility, the people that work there were – – – it was overwhelming in a good way. Very friendly staff. Made us very comfortable. A different type of setting, more home-type –

MS. ROBERTS-DROGIN: What was the biggest

MS. RESSA: – – – setting.

MS. ROBERTS-DROGIN: Yes. What was the biggest difference that you felt in hospice?

MS. STEGER: It was just the way they acted, the way they left him alone. The room itself was so nice. It was like a suite in a hotel. They had a couch in there. If you wanted to stay with your loved one, you could. They had a T.V. Of course, he didn ‘t use it, but it was just to see him comfortable, and it was good for the family. It was good for my other children – my grandchildren.

MS. ROBERTS-DROGIN: It gave you a place to be together.

MS. RESSA: Yes. And they also brought in psychologists for the children, you know, the grandchildren. They provided them with toys and discussed the grieving process, and it was something that I wasn ‘t aware of that hospice did, but it was very, very nice how they came to be with that.

MS. STEGER: Especially for your daughter, because she was young.

MS. RESSA: My daughter was six at the time.

MS. STEGER: And her grandpa was her life. She loved her grandpa.

MS. RESSA: It was very hard for all of us; some of us took it in different ways, but hospice for the surviving family members, I thought was a big help because we wouldn ‘t have gotten this type of help if we were in a regular hospital facility. And, to stress to you how wonderful the staff members were to the family members as well going through this process because this is somebody very close to us, and it’s our loved on , and we don’t want to see them suffer.

MR. RUSSO: Most people don’t even know about that part of what’ s referred to as hospice. How the program can help the family as well as the person in need of care.

MS. STEGER: Usually the person in need of care doesn ‘t know what ‘s going on, but you, the family, does, and you need to have that support.

MR. RUSSO: So did that support continue after he passed away?

MS. STEGER: Yes, they had meetings where a lot of people would show up, maybe 50 to 100, and we would make some kind of a little keepsake, and everybody would get up and tell you about who they lost, and after sitting through something like that, you realize you’re not the only one going through this. MR. RUSSO: Right.

MS. STEGER: And it makes you feel better, but – – –

MR. RUSSO: It doesn ‘t take away the loss.

MS. STEGER: No, no.

MR. RUSSO: It never can take away the loss.

MS. ROBERTS-DROGIN: But it gives you a sense that you’re not alone.

MS. STEGER: No. That’ s the one thing that – – – that’ s what helped in grieving, the meetings.

MS. ROBERTS-DROGIN: It sounds like, you had said that he wasn ‘t really aware of it, but you all were.

MS. STEGER: Yes.

MS. ROBERTS-DROGIN: And that helped you to move forward as a family, as individuals, each in your own way.

MS. STEGER: It’s always harder on the ones they leave behind.

MS. ROBERTS-DROGIN: Yes.

MS. RESSA: And also it was the dignity of giving our father the dignity of being able to just the family coming together and knowing that this was the closest that he could have to home before he had passed.

MS. ROBERTS-DROGIN: Yes.

MS. STEGER: I had promised him that. I promised him that he was not going to die in the hospital.

MS. RESSA: And that was comforting.

MS. STEGER: So I begged them to take him out, and they didn ‘t want to move him because they had, ”Oh, he could die in the movement, ” and I said, ”You know what? I’d rather that happen than him die in that hospital bed. ”

MS. ROBERTS-DROGIN: Because you had promised.

MS. STEGER: Right, I promised him that, and if that doesn ‘t happen, I’m never going to live with myself.

MR. RUSSO: I’m sure that must have helped tremendously with you.

MS. STEGER: Oh, it did. I felt such a relief that he got there, and I said he got there and he held on for, I’d say, a little over 20 hours, 24 hours?

MS. RESSA: Yes, it was approximately

MS. STEGER: It was tough, but it was the best thing that we did.

MS. RESSA: We feel very good as an entire family that we made this move to hospice in the end, and you know, it’s almost a year now, anniversary, of my father’s passing and we still feel that we did the right thing by bringing him to hospice.

MR. RUSSO: Can you tell us about your husband? What did he do? His career?

MS. STEGER: Oh, he was a strong soul. He was he didn ‘t want us grieving over him. He didn ‘t believe in any of that. He worked for forty-three years in maintenance and air conditioning. He served four years in the Air Force. He was a good father, good provider.

MS. RESSA: He was a great father.

MS. STEGER: Great sense of humor. He loved sailing, loved sailing. It broke his heart when – – – he was a very practical man, so when he knew he was going down, way before he went to the hospital, he sold his sailboat. Got rid of his fish pond, we had this big fish pond, because he knew that I couldn ‘t take care of it. And to tell you how good he was, everything taken care of before he passed away, because he was just worried about us. He didn ‘t care about him. He had said at one point to the nurses, ”I’m not worried about dying. We’ re all going to die. ” He says, ”But I’m very worried about my wife, being left alone. ”

MS. RESSA: And the children, I have a brother and sister and we ‘re very proud of our mom for – it’s almost a year and she has done more than what we would have expected her to accomplish and we ‘re very proud of her because you know, it’s hard for the whole family, but she did it.

MS. STEGER: I’m running the house. I did all the projects that he wanted finished, I had done.

MR. RUSSO: Thank you so much for sharing your husband with us and your family.

MS. ROBERTS-DROGIN: And your story.

MS. STEGER: Thank you.

MS. RESSA: Thank you.

MR. RUSSO: Thank you so much.

MS. RESSA: And thank you for having us.

MS. ROBERTS-DROGIN: Thank you for being here.

MS. STEGER: You ‘re welcome.

MS. ROBERTS-DROGIN: You ‘re a very strong and beautiful family. We ‘re going to take a break, and when we come back we will get more information on the hospice program, and how it can help your family.

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MS. ROBERTS-DROGIN: According to the National Hospice and Palliative Care Organization, in 2012 an estimated one-and­ a-half million patients received services from hospice. Considering the need for quality compassionate care for people facing a life-limiting illness, hospice provides tailored care and attention and support to the patients and their families.

MS. ROBERTS-DROGIN: And we’ re fortunate to have joining us now, Mary Ellen Polit, the Chief Administrating Officer and Keriann Page, the Chief Medical Officer of the Good Shepherd Hospice Center. Welcome to you both.

MR. RUSSO: Welcome.

MS. POLIT: Thank you.

DR. PAGE: Thank you.

MS. ROBERTS-DROGIN: Thank you for joining us.

DR. PAGE: Our pleasure.

MR. RUSSO: Thank you.

MS. ROBERTS-DROGIN: So, let’s talk first, very basically about what hospice is, how would you explain it to someone who doesn ‘t know anything about this process? DR. PAGE: So, hospice is a way of caring for people who are nearing the end of their life and have a life-limiting illness with focus on controlling symptoms and relieving symptoms, such as pain or shortness of breath or other disabling physical symptoms, and helping to provide emotional support and spiritual support as people face the end of life. The support is not only for the patient but for their families as well. We consider the patient and the family a single unit of care.

MS. ROBERTS-DROGIN: Yes. Sure. DR. PAGE: Because the disease that affects the patient, affects the family profoundly as well.

MR. RUSSO: Sure.

MS. ROBERTS-DROGIN: Of course, of course.

MR. RUSSO: Who is eligible for hospice?

MS. POLIT: I think first of all the patient, the physician, the patient’ s primary care physician would need to attest that if the disease were to run its normal course, the life expectancy would be about six months.

MR. RUSSO: So that ‘s a tough situation for families when they have to hear that.

MS. POLIT: And of course that is it’s not an exact science, that is if the disease were to run its course, and what we like to see really is the earlier the patients come on to hospice, the better. So, that attestation by the primary care physician, accompanied by an attestation by our own medical director, so those two physicians need to concur that that is the intended life expectancy should the disease run its course.

MS. ROBERTS-DROGIN: So that’ s often a big change. You go from maybe hoping or not having certainty to having some sort of certainty that you’re now facing the end of the process. Very difficult.

DR. PAGE: Interestingly enough, we ‘re not as exact as we think that medicine might be about knowing when we’ re at that point.

MR. RUSSO: I think there ‘s only maybe One [pointing up]?

MS. POLIT: Exactly. Exactly.

MS. ROBERTS-DROGIN: Yes.

DR. PAGE: What we do know is that as a general rule doctors tend to be overly optimistic about prognosis. That’ s human nature. And so as a result, we find that people often wait way too late.

MS. ROBERTS-DROGIN: And that ‘s a regret, you know? I think Carol Steger said to us –

MR. RUSSO: Sure, we heard that.

MS. ROBERTS-DROGIN: – – – she said she wished. Her husband, unfortunately had only one day to benefit from the care that was provided, and that was, she was so grateful to have him in there at all, but wished that he had had more time, and that he had been able to access the program sooner.

MR. RUSSO: But she did mention the program did continue to help her with bereavement.

MS. ROBERTS-DROGIN: Yes.

MS. POLIT: Bereavement services are offered for at least thirteen months following a patient ‘s death.

MS. ROBERTS-DROGIN: What are those services like?

MS. POLIT: But I think the one thing to think about is people tend to think of hospice as tied to death, but from our perspective, it’s really tied to quality of life. And, we’ re looking at helping the patient and their family to really reach the goals that they have, so one of the first questions a staff will ask a patient on admission is, what do you want to see out of this hospice admission, out of this hospice process? And it might be something like I would like to go to Atlantic City. I would like to go to my daughter ‘s wedding. It’s not related to death. It’s related to what do they want to see in their quality of life, and we work with the patient and the family to make the patient comfortable, so they can carry out activities of daily living, and they could do the things they want to do. I think that ‘s really the difference. We ‘d like people to kind of think not just that dark room and hand-holding part of end of life, but – – –

MS. ROBERTS-DROGIN: Right.

MS. POLIT: – – – really more to think of the quality of life.

MS. ROBERTS-DROGIN: Yes, living.

MR. RUSSO: Sure.

MS. POLIT: Yes, living. Exactly.

MS. ROBERTS-DROGIN: And also living afterwards. You know what Carol was saying that, was that she realized she wasn ‘t alone. And she had only briefly described some of the services that the bereavement counseling provided. Maybe you could speak a little bit more about that, so people know.

MS. POLIT: Well, they really do a variety of services, and certainly individualize the approach to each family. So, while during the course of care, the patients and their family are assessed by our bereavement staff to see what kind of needs they ‘ll have. So again for some patients, it’s one-on-one counseling, on other patients, it’s reliant on group support. We also have a child life program that’ s able to work with the children of families to be sure that their grief is appropriate for their age to help families understand what is the appropriate expression of grief for a child.

MR. RUSSO: Tell us more about Good Shepherd.

MS. POLIT: Well, Good Shepherd, we ‘re very, very proud, is a, what we would call now a large hospice, covering Nassau County and Suffolk County, that ‘s our two counties . We have 400 patients, approximately, and of those 400 patients, about sixteen of them are in our inpatient center which is out in Port Jefferson, and the other 384 live in their homes, live in nursing homes across Long Island. Most of hospice care is given to patients in their homes. The services are nursing services, social work, our pastoral care staff. We also offer, of course, health aide services, and our volunteer program and our bereavement program and our child life program.

MR. RUSSO: I see it in my elder law practice, in particular, what we hear over and over again, is I want to be home, or I want to die at home. And so this program really is an opportunity to fulfill a desire for someone at the end of their life and Carol even mentioned that it was important that he left the hospital and even was in the program for a short period of time that that was a wish that he had, and even though she couldn ‘t get him all the way home, she benefited from him leaving the hospital into your in- residence.

MS. ROBERTS-DROGIN: She said that hospice felt like home, and that ‘s the most beautiful thing. MR. RUSSO: This information is so vital and I’m glad we debunked a few of the myths at the same time today, because so many viewers have loved ones in all sorts of different states of being, health-wise, and hospice is a program that everybody should be aware of, and if necessary, take advantage of all that you do. So, thank you so much for being on Family Comes first.

MS. POLIT: Thank you for having us.

DR. PAGE: Thank you.

MS. ROBERTS-DROGIN: Thank you, both. And now we turn to Father Tony Stanganelli with a spiritual reflection.

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FR. STANGANELLI: The Apostle John writes to us that perfect love casts out all fear, perfect love casts out all fear. Now when we’ re surrounded by love, there is no fear. And that ‘s what I see is going on with Good Shepherd Hospice, that here are people that are at the other end of life ready to take that journey through a new rebirth into an eternal life, which they know will be beautiful, but yet the journey itself could fill some people with fear; leaving; fear of dying itself. And yet, believing that we are surrounded by love now and into eternity casts out all fear. The beautiful work that’ s done by Good Shepherd Hospice surrounded by so many people, both the professionals as well as the volunteers and family, creating an atmosphere where all of those people cared for can be freed from all fear. We hear how Shelly and her husband made that pact that no matter what they would stand by each other and that ability to stand by each other was made possible through Good Shepherd Hospice. What a beautiful gift that is to our community.

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MS. ROBERTS-DROGIN: Vincent, there are so many legal questions that come up when you talk about hospice and being at a stage in your life where that’ s an appropriate option. What do you advise families that are faced with this?

MR. RUSSO: Yes, it comes up a lot, it really does in our elder law practice. Families who come in, are so concerned about a loved one, what should they be doing, how will the system work, how will this get paid for.

MS. ROBERTS-DROGIN: Right.

MR. RUSSO: And so it is not uncommon at some point with a family I might have a discussion with them and say, ”Do you know about the hospice program? Is it time to think about hospice for your loved one? ” MS.

ROBERTS-DROGIN: And we ‘ve talked about that, and it seems like very often you are at the place where this comes up, and where families really think about it for the first time.

MR. RUSSO: Well, they ‘re so focused on their loved one.

MS. ROBERTS-DROGIN: Yes.

MR. RUSSO: It’s so emotionally charged, denial. No one wants to lose a loved one.

MS. ROBERTS-DROGIN: Right.

MR. RUSSO: So we have to really be compassionate and understanding and listen to our clients and now address the reality of the situation in the best way that we can, but I’ll share with you the beauty of that discussion and when hospice comes in. It allows a shift for the family and the patient, has an opportunity, really I think to reflect spiritually on their life and where they are and what’ s most important and the type of legacy they want to leave behind. And, so in terms of that shift, it’s so important so significant and – – –

MS. ROBERTS-DROGIN: The relief.

MR. RUSSO: It is a relief, and the family feels more relieved when they see their loved one is more relieved.

MS. ROBERTS-DROGIN: Yes.

MR. RUSSO: So it all ties together So, at a time when families are facing the loss of a loved one, hospice care can provide comfort, hope and spiritual guidance.

MS. ROBERTS-DROGIN: And I think you know, what we’ve seen today and what we’ve heard, it takes a very special kind of person to provide this love and care.

MR. RUSSO: Absolutely.

MS. ROBERTS-DROGIN: And we ‘re truly blessed that there are so many people who dedicate themselves to this work. For a guide to hospice care, you can visit Vincent ‘s law firm website at www.VJRussoLaw.com.

MR. RUSSO: Thanks to all our viewers for joining us, and remember, family truly does come first.

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