Let’s Talk Discussion Series: End of Life Care/Hospice
BY Pat Bradford
WBM’s signature series resumes with an in-depth roundtable discussion of the importance of end-of-life care. Over a catered brunch held in an exquisite private home representatives from the medical fields hospice care assisted living healing therapies and the ministry take up the conversation.
At the Table:
Rev. John Birkenheuer
Rev. John Birkenheuer has been a hospice volunteer in home care and at the LCFH&LCC for three years also serving its board for three years. He is a former hospice center chaplain and currently serves as the pastor of Potts Memorial Presbyterian Church in Willard North Carolina. He is a graduate of Villanova University.
Brett Blizzard is a Wilmington businessman and owner of Lumina Lighting. He was a caregiver for his mother Evelyn Blizzard at the Davis Center and the LCFH&LCC.
Selena Boyette BS RN-CHPN
Selena Boyette BS RN-CHPN serves as the director of provider outreach of LCFH&LCC. After years in public education Selena pursued a career in nursing. Having worked in the ICU then with home/facility hospice she later became the agency’s first palliative care nurse. Her passion lies in making palliative care more accessible to the masses. Selena is a graduate of East Carolina University and Cape Fear Community College. She has achieved her certification in hospice and palliative nursing and was named 2013 Nursing Alumni of the Year for Cape Fear Community College.
Pat Bradford Moderator
Pat Bradford is the Wrightsville Beach Magazine publisher and editor and also serves in that capacity for the weekly community newspaper Lumina News. Ms. Bradford is a founding member of the King’s Breakfast outreach and team leader of The King’s Ministry Team of Pine Valley Church of God. As such she coordinates the church’s food assistance outreach ministry including monthly hot meals for the LCFH&LCC. One beloved member of her ministry team Isabel Henry was a patient in the LCFH&LCC for five weeks during this past Christmas and New Year’s holidays.
Laurie Bystrom RN BA MPH
Laurie Bystrom has been the President and CEO of Lower Cape Fear Hospice & LifeCareCenter since 2000. Ms. Bystrom is a registered nurse by background and worked in nursing administrative positions in Ohio and Wilmington for 30 years prior to coming to hospice. During her tenure the agency has grown from serving 60 patients per day to close to 600 in all of their programs. Ms. Bystrom has held a position on the ethics committee of New Hanover Regional Health Network for nine years and has served as the past president of the Hospice Providers Network of North Carolina.
Nicole Freebourn has been a social worker with Liberty Home Care and Hospice for five years providing assessment education and counseling to patients and families. She has worked at the VA Medical Center and Emory University Hospital in Atlanta Georgia. Ms. Freebourn holds a master’s degree in social work from the University of Georgia.
Carole Bowman Green
Carole Bowman Green is a Certified Music Practitioner. A harpist she provides bedside volunteer therapeutic harp music in LCFH &LCC and bedside at The Davis Community. She previously served as the Grace United Methodist Church director of children’s and youth ministries. Ms. Green holds a seminary degree (MTS) in pastoral counseling and certification in clinical pastoral education. She was a caregiver for both of her parents with home hospice in the mid-1990s.
Dr. Thomas G. Lee
Thomas G. Lee MD is a New Hanover Regional Medical Center hospitalist and a specialist of internal medicine. He is board certified in hospice and palliative medicine. Dr. Lee is a graduate of Eastern Virginia Medical School in Norfolk and is the chairman of NHRMC’s department of medicine.
Charles Long holds a degree from Southeastern Community College in Whiteville attended the University of North Carolina Wilmington and has completed the Health Care Management program at Mt. Olive College. He has been employed at The Davis Community in Wilmington since 1988 and is the chief executive officer. Mr. Long is licensed by the state of North Carolina as both a nursing home administrator and an assisted living administrator. He also serves as a board member for LCFH&LCC .
Dr. Karen Reichow
Karen Reichow MD received her medical degree from Wayne State School of Medicine and accepted the Health Professions Scholarship through the U.S. Navy. She completed her internal medicine residency at Naval Medical Center Portsmouth then served as an internist for four years on Guam and at Great Lakes Illinois. Dr. Reichow entered the civilian medical field as a hospitalist and moved to Wilmington in 2003. Lower Cape Fear Hospice & LifeCareCenter implemented a strategic plan for growth and hired Dr. Reichow as a hospice and palliative physician leader nine years ago. Dr. Reichow is currently serving as the lead physician on the palliative care team at NHRMC.
Rev. JD Simmons
Rev. JD Simmons retired from pastoring in August as the Lead Pastor of Pine Valley Church of God Wilmington following 43 years of pastoring churches in five states and ministering in many more. He has just assumed the position with USA Missions for the Churches of God in raising funds for new church plans distressed churches and disaster relief for churches that have suffered catastrophic natural disasters. Rev. Simmons is a published author of three books on the subject of church leadership. With sister Patricia Leonard and wife Vikki he was a caregiver for his mother Betty Simmons in Mt. Airy North Carolina and his father-in-law Jack Souther of Cleveland Tennessee in hospice and palliative care centers in March and April 2013 respectively.
Our Father we thank you for the wonderful privilege to come around this table and to share with one another. I thank you for every person who is around this table every one of them whoever they serve and they care for those that are passing from this life. Thank you for them. Now we thank you for Pat bringing us together. May this article for the magazine touch people’s hearts and may it help them to see that there is hope in the hospice ministry. We pray Heavenly Father that when this meeting is over we should be closer to each other and closer to you. In Christ’s name we ask.
— Pastor JD Simmons
PAT BRADFORD: Tell us the biggest misconception about end of life care.
DR. THOMAS LEE: Probably the biggest one is ‘We’re giving up.’ Somebody is sick they call in hospice and we’re giving up on that person we’re not trying to help them or we’re not trying to alleviate anything.
SELENA BOYETTE: The biggest misconception is that hospice is for the dying. Hospice helps you live until you die.
CHARLES LONG: The biggest misconception is that you don’t have a choice. In the medical world we’re all trained to save people and treat people and a lot of times you don’t have any choice when you go in the hospital. They just do things to you and you don’t oftentimes get to choose because they’re there to save you or make you better. In the hospice world you are shifted to being able to make decisions on how things happen in your life.
DR. KAREN REICHOW: ‘They stop all your medicines’ and ‘just fill you up with morphine’ or ‘they don’t let you eat when you go over there.’ It’s somehow this horribly fearful and painful thing and those are all huge myths. When you have hospice care it’s really the gold standard for end-of-life care.
REV. JOHN BIRKENHEUER: When I first got involved with hospice the thought was ‘Hospice is there. When are we going to have the funeral?’
NICOLE FREEBOURN: A common myth is that we come in and that person is going to die tomorrow in the next week in the next month. We try to emphasize that we’re not here to timestamp anybody and we’re here to add life to their days whatever time they have remaining whether it’s three weeks or three months or in our case we had somebody for three years. We want that time to be comfortable and enjoyable and have them surrounded by the people that love them to be there to make it as comfortable and as pleasant as possible.
REV. JD SIMMONS: Some people have the misconception that a hospice facility is low-grade care that all they do is give you morphine and Ativan or Haldol or keep you in a snowed-under state when that’s not true at all. It is the most loving environment that gives the family an opportunity to just love their loved one without having to wonder ‘Do I give them medicine now?’
LAURIE BYSTROM: When hospice first began many years ago it was to help cancer patients live better or have less pain. In truth it’s for anybody. Only about 40 percent of the patients that are in hospice care are cancer patients. The other myth is care centers are for people that aren’t able to be managed at home. Our hospice has cared for hundreds of patients in this county on a daily basis that never leave their homes and are able to die with their loved ones around them.
PAT BRADFORD: So you can be a hospice patient at home you can be a hospice patient at the hospital or you can be a hospice patient at Davis at Liberty at the care center. The other aspect is what you all mentioned that it’s a negative experience when by far in my experience it can be the most positive experience imaginable.
REV. JOHN BIRKENHEUER: My mom was in palliative care in a nursing home. Not to take anything away from the nursing home but the care was so much more involved having the hospice nurses come in and check on her a couple of times a week to feed her to bathe her. She had the opportunity to live for another three years. She would laugh and joke with you and she knew that a hospice nurse was there and she wasn’t threatened by it.
NICOLE FREEBOURN: People who don’t do this say to me all the time ‘I don’t know how you do that every day.’ Even my husband says that to me. You would be surprised but if it’s something that you’re passionate about and something that you believe in you care about then it actually can be a very beautiful experience to be there with somebody when they pass.
REV. JD SIMMONS: I think it takes a special type of person to work in a facility where most everyone that comes in you’re going to give end of life care. You know that and you’re going to meet with families that are grieving and people grieve in so many different ways. Some get angry and we all know that. But for them to be able to navigate all those emotions and still care for that person it’s a calling. I know that may sound super spiritual but I do believe there is a calling for people to give themselves because that’s what they’re doing.
NICOLE FREEBOURN: It can be really beautiful if they’re comfortable and it can just be a really wonderful experience and not one that is scary or sad.
CHARLES LONG: It’s very rewarding to me to be able to see the assistance that you give to watch those tears sort of dissolve and them be able to enjoy those last days instead of being fearful and always wondering what is going to happen next.
SELENA BOYETTE: At the end of life you don’t get a do-over. Most of us are probably called to this because of personal experience we had that made us know that hospice was okay.
DR. THOMAS LEE: A lot of times when the patient is in the hospital and is very very sick we can usually do a reasonable job of taking away a lot of physical symptoms. Perhaps the biggest reward I ever get is when we take that next step and that person has something not quite right in their life. Maybe they didn’t get along with one of their children or maybe they have an issue where they weren’t quite there with God. Sometimes when you can control their symptoms and they have little clarity the family will come together or they’ll get a moment where they really take that next step and then you see the true peace.
BRETT BLIZZARD: The death of our parents or loved ones I compare it to a club that none of us want to be members of.
DR. KAREN REICHOW: We’re already members of that club it’s just about being human and having that connection. It really makes me feel like the best doctor I could be.
REV. JD SIMMONS: I think the most beautiful experience I’ve ever seen in hospice was a member of my church who had no family was alone and went to hospice. The nurses and the caregivers recognized that he was alone in the world and I saw them ratchet up their care their touching their love to someone they didn’t know I’ll never forget it.
CAROLE GREEN: One evening there was a person the nurses had told me there was nobody with them. This was a pretty down-and-out person and so I went in and played probably longer than I ever have. It was just the sense of how sacred that really is. That is the role of therapeutic music versus the music therapy in the traditional setting. With hospice you’re letting that family make decisions and in playing music I’m letting the patient make me play by the way they breathe their tension I try to read that as much as I can. But what I have noticed is that the minute I start playing inevitably a family member will start crying. I’m always always just so filled with the sense that this is so right. This is such a good thing for human beings to do for one another.
BRETT BLIZZARD: It’s like the hymn: ‘It Is Well With My Soul.’
CHARLES LONG: A story comes to mind where there was a gentleman in the care center who wanted to see his horse one more time and the staff arranged for the horse to come outside on the patio and brought the horse so the gentleman could see his horse.
REV. JOHN BIRKENHEUER: The funny part of listening to you is the realization that we go to minister to these people and we are ministered to. The blessings that I have received are much more than anything that I could do just being there. I remember one gentleman his family wanted him baptized at the LifeCareCenter so I went in and did it
and he died 15 minutes later. How humbling.
BRETT BLIZZARD: One memorable experience with my mother Evelyn Blizzard was at the care center. The morning she passed the word just went through the whole center and all of a sudden every staff member came in and hugged us. It was the most special thing.
NICOLE FREEBOURN: We’re coming from so many different perspectives and so we’re treating the body and the soul and the heart. Let’s control the symptoms but let�’s also treat any underlying emotional issues and things that you have unresolved or any spiritual issues that you need to work through and as a team we can approach this holistically.
SELENA BOYETTE: I think that’s the way that hospice is very different from other areas of medicine. Typically we look to our doctors to be paternalistic and ‘This is what you’re going to do this is going to be the plan this is how you’re going to get better.’ In hospice the patient gets to drive the bus and meeting them where they are is incredibly important. They have choices about things. We don’t tell them what they have to do. We don’t tell them you have to take morphine. It’s more about laying all the cards on the table and letting them pick their own options let them have some autonomy. When you’re dying sometimes you don’t really have control. But if we can give them some control over dictating how this is going to be it really is their writing of their very own last chapter.
LAURIE BYSTROM: You brought up something interesting about why hospice is different and that’s the whole team approach to it.
CAROLE GREEN: I know palliative care is about comfort and alleviating of suffering but what are practical components of that? You know to me that’s something to grow in our culture because I wonder shouldn’t palliative care be in every stage of our lives?
DR. KAREN REICHOW: When someone gets sick they start having a lot of medicine and very little palliative. All palliative means is it’s all in pieces heart mind and soul all those aspects are covered. As you get sicker you tend to have more medical but also hopefully more palliative. But at the end of life like all end-of-life care all of hospice is palliative but not all palliative care is hospice. Yes we should have those aspects of holistic care in all the medicine that we have.
NICOLE FREEBOURN: When they come in one of the first things a lot of times they say is ‘I don’t want to go to the hospital anymore’ because they’ve been back and forth so many times and we say ‘You don’t have to.’
BRETT BLIZZARD: Mother was at Davis for many years and had some complications with knee surgery and she ended up at Cape Fear ICU. Hospice came in there because there was no room at the inn at that point in time. Then a room opened up and they asked me ‘Would you like to go to the care center?’ and I said ‘Absolutely because I had visited so many friends there. I knew the place. We were fortunate enough to have the last days with mother there.
PAT BRADFORD: What’s the first thing you would want someone to know that had no knowledge at all of what the hospice experience was?
CHARLES LONG: How to engage the service.
NICOLE FREEBOURN: We just need a doctor’s order. Families will call the office sometimes when they haven’t spoken to a physician yet or they just have seen their loved one decline or they’ve been in and out of the hospital and say ‘What do we need to do to get hospice?’ A lot of times that’s the first: ‘Where do we start and how do we find out more about it?’
DR. KAREN REICHOW: When you talk about palliative care end-of-life care it’s many facets the doctor is one piece; two doctors have to recommend somebody to have hospice care two doctors actually have to say ‘I think this person might have six months or less.’ That’s a Medicare rule. So in order to use your Medicare benefit two doctors have to say ‘I think they might die but there’s no penalty for us guessing wrong.’
NICOLE FREEBOURN: That’s important because we walk in and they have the six months in their head we’re like well that could or could not happen. That doesn’t mean you’re going to die in six months that’s just Medicare’s language in order to qualify you for hospice.
REV. JD SIMMONS: Isn’t it the doctor’s diagnosis that would recommend hospice to a family?
DR. THOMAS LEE: Usually that’s the case but what will often happen is somebody will come in without a diagnosis or with progression of a disease but not really have had the conversation. It’s the doctor’s job to educate the patient as to what their disease is make a diagnosis and present the natural course of the disease and then present all the treatment options everything from very aggressive care to partial care to hospice care.
REV. JD SIMMONS: In my mother’s case she was 93. She had stomach cancer and a brain tumor. The doctor said she doesn’t need an MRI she needs for us to put her in hospice. He said to my sister ‘Why put her through more invasive tests more pain why not keep her comfortable because of her age and all of the other factors so that she can enjoy the family?’ When we went to hospice she enjoyed us. My mom’s most wonderful thing in her life was her family and on Thursday all four of her children sat and she kind of had court with all of us and explained to us what the rest of our lives would be. We laughed and we enjoyed her. She laughed she ate she drank she just had a beautiful day to the point that the next day on Friday the social worker for hospice called us into her office and told my sister and me your mother is not sick enough to be here so we’re going to take her back to the nursing home. And that was on Friday and just a few hours after that she passed away. She got that last wonderful day with her family.
DR. THOMAS LEE: You can go back to the hospital if you’re in hospice. There are plenty of diseases or symptoms that can only be managed in the hospital or would require specific intervention. You can be treated palliatively with chemotherapy or radiation treatments and still be in hospice.
NICOLE FREEBOURN: And if you feel you want to come off hospice care we can discharge you. We’ll take you off and you can always come back on.
SELENA BOYETTE: The scope of hospice nursing in homes is kind of like Army medicine our team comes together and works really hard with what they have. Each team is as individual as the people who are on them. And everybody brings their talents; I have a nurse who takes her guitar because she knows a patient needs that.
DR. KAREN REICHOW: I tell my team at the hospital that everybody has to do the work of the dying and sometimes you finish your work before you go and sometimes you don’t and it’s the people that don’t finish their work that have a little more difficult time at the end of life. The work of the dying is to basically do five things: You have to say forgive me I forgive you thank you I love you and goodbye. Some people don’t get past the forgive me or they can’t even get there. So you have doctors nurses aids the chaplains social workers volunteers � one big team.
SELENA BOYETTE: Hospice is a Medicare benefit and we’re more and more regulated so there is more and more computer work and paperwork but I think that what keeps us coming back are those times we stop and sing at the bedside.
CAROLE GREEN: I was playing for a family it was siblings who were really at odds and it was a conflicting kind of atmosphere in the room. You really could feel it and they were kind of like a harp please right? But in two days they were hugging they were reunited as siblings. It was the most incredible thing. And yes the harp because it’s got so much symbolism connotation it’s a little scary.
REV. JOHN BIRKENHEUER: In the area of people who volunteer I had this special group of people a vigil people that were there for the last 24 hours; one would sit there six hours at a time with those who were dying. And the love that came out of these volunteers is so special. They were willing to go any time of the day or night in a home or a nursing home. If you want to know what a good Samaritan is that’s it.
REV. JD SIMMONS: I agree with John. It’s all of us working. We have a team in our church called the Pastoral Care Team that is made up of a couple of retired hospice nurses and others. Their role is to help any family not just families of our church to be able to cope and to work hand in hand with hospice nurses; to come alongside them and help them. It really does takes a village.
PAT BRADFORD: One of the things that Pastor Simmons said at his mother’s funeral was that hospice allowed them to stop being the caregivers and just be the family. That really resonated with me.
REV. JD SIMMONS: We could not have done physically what hospice did for us because mama had to be turned and lifted and medicated and we couldn’t do all those things. I could just sit in a recliner by her bed and hold her hand.
SELENA BOYETTE: Our certified nursing assistants are masters at therapeutic touch. I think that’s a ministry in and of itself but certainly a healing. One of the things that hospice does in your home is teaches you how to care for your loved ones to give you confidence. Nursing assistants can teach families how to touch in a therapeutic and soothing manner.
DR. KAREN REICHOW: How vulnerable can you be to be naked and not able to take care of yourself and here is this person who is doing these very loving things for you. Everybody plays a role. Sometimes for the patients that are awake and want to go out and enjoy things it’s doing their hair and doing their nails. For patients who are at the end of life it may be caring for wounds and making sure that you have that dignity that you smell nice and you look good.
LAURIE BYSTROM: My mom is a hospice patient. She is 96 and lives with me. My mom has been living with me for 10 years. She�s end-stage heart disease and she’s been declining over the years. But as she declined and had things happen to her I was having to be the nurse. So they always say to me now just sit back be the daughter here. And I’ve been blessed to be able to experience home care with her respite care with her in the care center acute care with her in the care center and crisis care at home with her. I think I�ve had it all.
SELENA BOYETTE: The best thing in the world is for somebody to come up to you in Wal-Mart and say ‘Do you remember me?’ and I promise you 99 percent of the time we do. Those people touch us just as much as we touch them.
REV. JD SIMMONS: At my mother’s funeral as I was preaching I looked back in the congregation and there were two hospice nurses that had cared for mom and they were sitting there. What that did to me � that they cared enough to come and be with me.
DR. KAREN REICHOW: There is one more person the attending physician.
PAT BRADFORD: If I’m ill and I’m taken to the hospital it takes two doctors to say that it’s time?
DR. THOMAS LEE: That you are qualified.
PAT BRADFORD: That I’m qualified for hospice it is an option. And who makes the decisions?
DR. KAREN REICHOW: Hospice exists to have a plan and you can only have a plan when you coordinate a lot of care with a lot of people and one of those is the attending physician. Just because you’re going to have hospice services doesn’t mean you give up your doctor. It just means you get another one as well. You get a hospice physician who helps coordinate the care with your own physician and then all of these people work together.
PAT BRADFORD: Who pays for it?
DR. KAREN REICHOW: Well there is the Medicare hospice benefit which is probably how most people have hospice so it’s part of the Medicare benefit. I like to tell families: you already paid into all of this care you should use it and it�s a very lucrative benefit because it pays for your medicines and the equipment you need and all of these people to take care of you. We try to keep people at home and help them live as well as they can at home because it�s less expensive than being in the hospital at the end of life where you might get a lot of treatments that aren’t going to do you any good. If you’re not a Medicare beneficiary yet most commercial insurances have a hospice benefit as well.
NICOLE FREEBOURN: Medicaid and private insurance have two different processes of getting it approved than Medicare.
SELENA BOYETTE: Lower Cape Fear Hospice is nonprofit. As a nonprofit we have a foundation to help support us and we’re able to serve patients regardless of the ability to pay.
REV. JD SIMMONS: Are some hospices for profit?
NICOLE FREEBOURN: Yes but let me clarify that. That doesn’t make the care any different and it doesn’t make the benefit any different. It’s just set up differently kind of like tax language. But we also have funds and access to things should we have somebody who is not insured or has very little resources. It’s just classified differently.
SELENA BOYETTE: My granddad passed away last year and where he lived there wasn’t a not-for-profit hospice but his hospice services were good. On his obituary that I see every morning in my Bible it says that donations should be made in lieu of flowers because of the impact that hospice had.
REV. JD SIMMONS: I see that a lot. I ask every hospice person I meet ‘Where do you guys get your training because you’re all the same?’ In Maine in Tennessee in Ohio in Florida in North Carolina it’s like they’re cloned they’re all the same; all compassionate caring loving people. I think that’s the thing that needs to be emphasized to the public that this is not a cold sterile place. This is a warm kind gentle ministry.
PAT BRADFORD: It’s a cliche to say that death can be beautiful but it can be.
REV. JD SIMMONS: Precious in the sight of the Lord the death of his faithful servants.
NICOLE FREEBOURN: You see a peace sometimes if you’ve ever sat with somebody who has passed or who is passing. It’s this transition that is just amazing and powerful.
REV. JD SIMMONS: Bottom line for me is if I ever need it: I want to go to hospice.
PAT BRADFORD: Me too.
CAROLE GREEN: Bottom line.
REV. JD SIMMONS: Bottom line.
DR. KAREN REICHOW: If you ever need it? Wait a minute.
Produced by Pat Bradford
Edited by Marimar McNaughton and Susan Miller
Photography by Allison Potter and Joshua Curry
Stenography by Tina StancillTina Stancill is an Official Court Reporter for the state of North Carolina. She is a Registered Professional Reporter a Registered Merit Reporter and a Certified Realtime Reporter. She is a member of the National Court Reporters Association and is a past president of the North Carolina Court Reporters Association. For the past 27 years she has served in her capacity as a court reporter in Superior Court at the New Hanover County Courthouse.
Held at the home of Carole and Richard Johnson
Catered by Tyson Amick Aubriana’s
Styled by Julie Robinson Airlie Moon
Flowers by Chelsea Neidenthal Fiore Fine Flowers
Hair and makeup styled by Mary Stewart Teachey and Shawna McGowan Bangz Hair Salon