Communique: Increasing Awareness About Benefits Of Hospice And Palliative Care
November is National Hospice and Palliative Care Month. Gwen Whitley, the President and CEO of Lower Cape Fear Hospice and Life Care Center (LCFH), says the goal this month is to increase awareness and dispel misconceptions about what happens when patients receive care.
Listen above, and read our extended conversation below. Additional points of conversation include community services provided by LCFH, when to call, the difference beteween hospice and palliative care--plus the Festival of Trees, which is ongoing through December 30 at the NC Aquarium at Ft. Fisher.
Gina: This month, November, is Hospice & Palliative Care Month …
Gwen: That's correct. It's National Hospice & Palliative Care Month. This is a month that we really focus above and beyond the education that we do out in the community—trying to educate people about the benefits of Hospice & Palliative care. There are a lot of misconceptions about Hospice & Palliative care, so this is a time that we really try to educate the community. Because many times, it's folks in the community who recognize that their loved one or a friend or a church member may be declining and feel that they need some help. And they may reach out either to the family or to the patient, or they may call us themselves to give hospice or palliative care referrals. So, community education is really important to us and especially for the month of November.
Gina: Tell me about some of the misconceptions people have about Hospice & Palliative care.
Gwen: Many people believe that hospice is a place. We are very fortunate as the only hospice provider in the southeastern part of North Carolina that has 3 inpatient hospice facilities. Only about 7% of our patients utilize our inpatient units. 92% of our patients get their care provided to them in their own homes. I think the other big misconception is that it is just for the last few days, when really, hospice care is meant to be for several months—up to 6 months, sometimes up to a year—so people really think of the last few days of life as when you bring hospice in. Our mission and our goal is to serve patients while they feel well enough that we can help them live every moment, and that in their remaining time they feel good, they're free of symptoms, and they are able to enjoy the time they have left, interacting with family and friends, being able to go on trips, looking at their bucket list to see if there are things they want to do. One of the things that we hear quite often from our families is, "I wish we had called sooner." They don't realize the impact of having an entire team come into their home and provide that care to them. One of the other big misconceptions about hospice care is that people feel that it is a sign of giving up—that it shows a sign of weakness. Sometimes families feel that taking that final step also portrays or sends the message to their loved one, "Okay, we've given up on you." So that's a big misconception. And our philosophy with our hospice program is all about helping you live to the very best quality of life.
Gina: Yeah, I know. Just as an aside, my father was having hospice come in the day he died. He died that day. And … how much better it would have been …
Gwen: How much better it would have been. It really would. An interesting statistic, and this is a nationwide statistic and it certainly proves true for us: over 50% of our patients that come onto hospice services stay two weeks or less. And what we always try to encourage patients and families to do is come onto services earlier, because in those last two weeks, the families and the patient really miss out on that benefit of having those hospice services sooner. There have been recent studies—most recently, just a couple of months ago—that patients with congestive heart failure live longer when they enter hospice care earlier. And your personal story just really reflects that people feel it's for the end of life. It's so much more than just the end of life. To be able to have a full interdisciplinary team that includes a physician, a nurse, a social worker, a nursing assistant, a chaplain, as well as volunteer services—it really is a whole team that looks at that individual patient and family and meets those needs. If there are estranged relationships in a family, they are sometimes able to mend those relationships—and what a relief that is to family members, to the survivors, and to the patient that they feel really at peace, that they've taken care of any loose ends or business that hasn't been addressed.
Gina: Let me ask you, because people, I think, also have a misconception about this: hospice is covered by—
Gwen: Yes. One of the things that is an unknown to the general public and community is that hospice is covered 100% by Medicare. The other thing that people do not realize is that once a patient comes onto hospice, hospice assumes all of the expenses related to that care—whether it be medications, medical supplies, equipment in the home, all of those things are covered. What a relief that is to families and patients that are worrying about the financial stressors. This is care that they are able to receive. And under federal law, hospices are not able to bill any additional charges to the patient and family. So when a patient elects hospice, their financial responsibility for that care and the additional things, like medications, are all covered under that hospice benefit. Most private insurance companies have a hospice benefit that is very similar to Medicare. Medicaid also covers hospice services at 100%. The unique thing about Lower Cape Fear Hospice is that we are a nonprofit hospice. We never turn anyone away in regards to their ability to pay. Each year, we provide over a million dollars in free care to individuals that don't have any insurance or any way to pay for those services. And the nice thing about that is those patients who come in and don't have any payer source receive the exact same care of a patient that may have insurance or Medicare. So it's a very unique service that we provide, that we don't look at insurance or Medicare or how we're going to pay for this. That is part of our philosophy and our mission, that we will serve everyone. And we do that on a daily basis.
Gina: Tell me about the kind of help volunteers provide.
Gwen: Our volunteers are amazing. We have over 600 volunteers. They do a variety of tasks and services for our patients and families. It may be going in and sitting with a patient for 2 or 3 hours for the caregiver to get out and do errands, to do grocery shopping. It may also be just companionship to be there. One of the programs that our volunteers participate in is our veterans volunteer program. We have a large group of veterans that have decided to volunteer with Lower Cape Fear Hospice. We serve many veterans. Once the patient is admitted to hospice services, we automatically start the process of trying to match one of our veteran volunteers up with that veteran patient that we are serving. We do pinning ceremonies in the home with our volunteer veterans—patients receive a flag, a proclamation. Veterans are very special group of people that we care for, and we are so blessed to have those veteran volunteers that are willing to serve the veteran patients. It's their way of giving back. Our other volunteer programs range from being in the home—if that's where the patient is—but we also serve patients that are in nursing homes and assisted living facilities. Just that extra person being able to go in and to be there for that patient that may be in a facility. It may be quietly reading to the patient, it may be going and singing songs with the patient. We have that request sometimes—"Can someone just come in and sing some hymnals to me?" So that's something that is very nice with our volunteers. There are also other volunteer opportunities. They can come in and work in the care center and deliver water to patients' rooms, or man our front desk and greet visitors that come in as well.
Gina: And I know that the Lower Cape Fear Hospice and Life Care Center also has programs for people who are in grief. Can you tell me about some of those programs?
Gwen: One of our services that is essential, in hospice as well as palliative care, is that we have a large bereavement department that works with the family as they are admitted onto hospice. There may be some anticipatory grief and worry about, "What's gonna happen to my family?" if it's from the patient, or the family worrying, "What am I going to do?" So those are some anticipatory grief counselings that we do when a patient comes onto services initially. Medicare requires all hospices to provide 12 months of bereavement services after the death of a loved one. We are extremely proud of our bereavement program. We have a large bereavement staff of over 15 bereavement counselors that work full time. There's individual counseling that is done with individual families. There are also group counseling sessions that have been very successful with a grieving family; what they realize when they come into a group is that they're not alone, there's someone else that's experiencing the same feelings that they're feeling. We have special group programs that are around the holidays—there's one that's going on now—really trying to reach those families that are struggling with the first holiday since their loved one passed. We do grief workshops that are centered around Mother's Day and Father's Day, but also grief workshops for the loss of a spouse. So those are things that are extremely important to us. We've taken our bereavement a step further. We have bereavement counselors that visit all the schools in New Hanover, Pender, and Brunswick County weekly to assist the counselors in those schools if they have a student that is dealing with loss, grief—those are things that we try to do, come alongside our educators and assist in the loss that manifests itself so often in our school systems and in the classrooms.
One of the other things that we are extremely active with is children's bereavement. Children grieve much differently than adults. We sponsor bereavement camps all during the summer months—we do some in the fall as well—to have those children come in and interact with other children who are going through loss, who are in the same age group. And there are so many activities that they do with children's counseling that just reveal a lot of issues that may be going on with the child or in the family. We also provide community bereavement. It doesn't matter if you or your loved one was served by Lower Cape Fear Hospice. Our bereavement services are open to everyone at any time. So we are very thankful that we have invested in our bereavement department because life doesn't end with death for family. It expands and continues for months and years afterwards. Lorraine, our expressive arts therapist, does masks, and has children paint what they want the outside of their face to be that other people see. And then on the inside of the mask, what they're feeling. And it is so moving and so revealing what these children go through with loss and grief.
Gina: It’s so good to have them think of it in that way and be able to express it in that way.
Gwen: I think that one of the differentiators is our physicians. At Lower Cape Fear Hospice, we have 7 full-time positions, with 6 of those being located here in Wilmington. They don't have other private practices; their career is dedicated to caring for our Hospice & Palliative care patients. All of our physicians are board certified in Hospice & Palliative care. Hospice & Palliative care is a specialty, much like cardiology is a specialty, pulmonary is a specialty. Hospice & Palliative care is a specialty that requires extra training and fellowships and then certifications. So our physicians really are specialists in the care that they provide. Many of our social workers and nurses are also certified in Hospice & Palliative care, which just ups that level of care that the patient and family receive in the home.
Gina: Tell me about palliative care.
Gwen: Lower Cape Fear Hospice also offers palliative care. Palliative care is different from hospice because anyone can be eligible and not have a terminal diagnosis. Palliative care patients may have diabetes, high blood pressure, heart disease, pulmonary disease, and they need that extra layer of support for their primary physician. So palliative care patients can be seen in the hospital. Many are seen in their home as well. And the palliative care nurse practitioners that care for these patients in the home report after each visit to the patient's own primary physician. Palliative care is becoming more and more popular across the nation. We certainly have seen that in our organization. We've had a 100% increase in our palliative care referrals and admissions over the last two years. You will begin to hear more about palliative care as this movement moves forward.
Gina: What is the aim of palliative care and what is the aim of hospice?
Gwen: Palliative care offers relief for pain and symptoms. The other aspect of palliative care is that it really focuses on patients being able to set goals of care. What do they want—do they want chemotherapy, and how long do they want to try chemotherapy? Do they want to go back to the hospital, or would they rather stay at home and have someone see them in the home? But a large part of it also is managing any pain or symptoms they have. If they are a patient that is receiving chemotherapy, the nausea and other side effects that accompany that, our palliative care nurse practitioners are able to manage those patients at home, reducing the number of hospitalizations they may have. Hospice care is really centered around a patient that has a terminal illness who has been diagnosed with 6 months or less to live. Patients may stay on hospice longer than 6 months because they generally improve once they access the care earlier, but hospice care really is about the patient and the family—focusing on them as a unit, making sure the patient is comfortable, is able to enjoy doing the things with the family that they need to do. And so often what we see with our hospice patients that come in late is that they have suffered for months and their life could have been much more improved by accessing the services earlier.
Gina: One of the fundraisers that the Lower Cape Fear Hospice and Life Care Center has each year is the Festival of Trees.
Gwen: Yes. We're very excited about our Festival of Trees. For the past three years we've held our Festival of
Trees at the North Carolina Aquarium at Fort Fisher. If you've never been to the aquarium at a Festival of Trees, it is absolutely gorgeous. We have 50 trees that are placed throughout the aquarium next to the tanks. It is absolutely amazing. The aquarium has reported record numbers of visitors—I think 30,000 last year during the Festival of Trees. It's a wonderful opportunity to come out and see the aquarium, but also to see the beautiful trees. We have had sponsors in the community sponsor our trees for everyone to enjoy. It's a very moving experience. We have a dove tree at the aquarium where visitors can place the names of their loved ones. So it's a wonderful event. It runs November 16th through December 31st, and I would encourage everyone to come out and see those. The admission is just the admission that the aquarium charges to come in and visit the aquarium on any other day of the year.
Gina: And just for folks who might be new and don't know anything about this—at the Festival of Trees, there are a bunch of Christmas trees ...
Gwen: There are a bunch of Christmas trees. There are 50 decorated trees that are just magnificent. We have some very talented people in our community and our staff that just do an absolutely wonderful job. It's a great way to get in the Christmas spirit, to come down and look at those trees. But we are extremely thankful for the sponsors that sponsor those trees. And we will start decorating tomorrow and Friday so that we'll be ready for the Festival of Trees to open up on Monday.
Gina: Is there some information online about who's involved?
Gwen: Yes, there is, and I would encourage everyone to visit our website at LCFH.org. You can find all of the information about our Festival of Trees and sponsors for the trees. I would encourage you to visit that site.
Gina: And when is the White Pants Gala?
Gwen: The White Pants Gala is always held in August and it's the last Saturday of August. I believe for 2019 that may be August the 24th. This is our signature fundraising event that we do in the community. It's always a great time. Wonderful, wonderful auction items, silent auction items. We generally have over 100 or 125 items that are auctioned off at the White Pants Gala.
Gina: And they're really nice.
Gwen: They're very nice prices.
Gina: And Gwen, if you had to tell people in the community one thing about hospice or palliative care, what do you just really want people to understand?
Gwen: What I want people to understand about Hospice & Palliative Care—it's not about dying, it's about living. And to reach out to us just to ask some questions. We will certainly talk with you. There's no pressure. And to really understand that it is about having the best quality of life.
Gina: Thank you so much.
Gwen: Thank you.