This year marks the 10th anniversary of Hospice of the Panhandle’s inpatient campus in Kearneysville. Sen. Shelley Moore Capito, R-W.Va., delivered a speech to commemorate the anniversary.
For patients with terminal illnesses, hospice care is a form of health care that provides enhanced comfort and quality-of-life resources when few medical options remain.
But ensuring a hospice patient’s comfort and happiness can be tricky in a traditional hospital setting, according to Maria Lorenson, development director of Hospice of the Panhandle located in Jefferson and Berkeley counties.
Crowded medical settings often come with loud noises and fewer lifestyle supports, she said. But that’s where inpatient facilities come in.
Inpatient facilities like Hospice of the Panhandle’s campus in Kearneysville provide a residential health care setting.
Here, patients continue to receive support, but also experience a level of normalcy harder to access in a traditional hospital, Lorenson said.
“It’s very quiet, peaceful (and) serene.”
While Hospice of the Panhandle has operated since 1980, this year marks the 10th anniversary of its current inpatient facility. To celebrate, residents of West Virginia’s Eastern Panhandle and beyond visited the campus Monday.
During the celebration, Sen. Shelley Moore Capito, R-W.Va., delivered remarks regarding her parents’ history undergoing hospice care, as well as the importance of supporting end-of-life health care facilities.
“This is a real soft spot for me, hospice care,” she said.
Hospice of the Panhandle CEO Nikki Bigiarelli welcomes guests to a celebration of the inpatient facility’s tenth anniversary.
Photo Credit: Jack Walker/West Virginia Public Broadcasting
“The way to care for either life-ending illnesses or folks with dementia — or whatever the issue is — is something that I think all of us… will live,” Capito continued. “Every tender touch, every warm and friendly smile, every professional engagement is so absolutely important.”
Capito’s sentiments were echoed by Patti Maerten Hicks, whose husband, Dan, was admitted to the facility after receiving a pancreatic cancer diagnosis at age 47.
As her husband’s condition worsened, Maerten Hicks said that staff members volunteered to host an impromptu ceremony at the facility that would allow her husband to take part in their children’s high school graduation.
Maerten Hicks said that seeing facility staff and the local community rally around the ceremony brought joy to her husband and family during a particularly challenging period of time.
“Our family experience is just one story, one experience, that demonstrates how important the inpatient facility is to our community,” she said.
Hospice of the Panhandle is a health care facility located in Kearneysville, Jefferson County.
Photo Credit: Jack Walker/West Virginia Public Broadcasting
Lorenson said that operating an inpatient facility can be costly, which has limited the prevalence of inpatient care nationwide.
But residents can access hospice care using Medicare or Medicaid benefits, which prevents any financial burden from falling on the facility’s patients themselves, she said.
Plus, with the creation of the inpatient facility 10 years ago, Lorenson said that she and her colleagues feel they have enhanced medical resources available to the rural community surrounding the facility.
In a speech to the celebration’s guests, Hospice of the Panhandle CEO Nikki Bigiarelli said that the facility remains committed to continuing to serve residents like these in the years ahead.
Since opening 10 years ago, the inpatient facility — which can serve up to 14 individuals at a time — has admitted more than 3,000 patients for care, she said.
“I was born and raised here in the Panhandle, and taking care of our own people is very near and dear to my heart,” Bigiarelli said. “We’re going to continue to find ways to serve and take care of the deserving people of this Panhandle.”
Medical students at Marshall University are working to fulfill the end-of-life wishes of terminally ill patients.
Medical students at Marshall University are working to fulfill the end-of-life wishes of terminally ill patients.
Fourth-year medical student and president of the chapter, Pooja Warrier, co-founded the Marshall chapter of DreamCatchers earlier this month.
The DreamCatchers Foundation, established in 2005, has been an instrumental force in fulfilling dreams ranging from simple wishes like reuniting with loved ones to more elaborate dreams like traveling to a cherished destination. The new Marshall chapter was officially chartered earlier this month and has already fulfilled its first dream.
A veteran in hospice care named Donnie Adkins requested a flagpole be installed in his front yard to represent those in his family who served his country.
DreamCatchers were able to partner with veteran volunteers from the American Legion Post 93 to install the flagpole, and Sen. Michael Woefel, D-Cabell, arranged for Adkins to receive a West Virginia flag that had been flown over the state capitol.
Warrier said it was an indescribable feeling to fulfill the dream of someone in hospice care.
“We all have a lot of dreams and oftentimes, when you have a sudden decline in health, you think of many simple things that you could do with your loved ones, and so to be a part of that, it’s an incredible opportunity,” Warrier said.
For his series, “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas spoke with Katherine Calloway, director of Clinical Development for HospiceCare of West Virginia, to find out more.
Former President Jimmy Carter’s family recently announced he was entering hospice care. But what is it?
For his series, “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas spoke with Katherine Calloway, director of Clinical Development for HospiceCare of West Virginia, to find out more.
This is a conversation many people don’t want to have with their loved ones, but it is an important one.
This interview has been lightly edited for clarity.
Douglas: Give me the elevator version of what hospice care is.
Calloway:HospiceCare of West Virginia, our organization, is the largest hospice organization in West Virginia. We cover 16 counties, we are inpatient and outpatient, we have a palliative component, and we have our hospice component. Palliative is for any stage of a disease process. It is not end of life. It is considered another facet of someone’s care, so that they can improve their quality of life during their disease progression.
Hospice is end of life care. And when we think of hospice, we think of someone who qualifies for hospice or would be referred to hospice by their physician, if you were to take away all medical intervention, you would think to yourself, I expect that person would pass within six months. Now, that doesn’t mean that we don’t do intervention, or they don’t continue to do medications. We have patients who come in and out of the hospice system; they may come in for a period of time, they may graduate from hospice, or they may go back into hospice at a period of time.
One of the misconceptions about hospice is that you go into hospice to die, which is not the case, or you go into hospice, and you no longer receive care, which is also not the case. And there are a lot of perceptions of what hospice probably was 20 years ago, that are very different today. So, I come to hospice as a primary care physician.
Dr. Katherine Calloway from HospiceCare of West Virginia. Courtesy
Douglas: You often hear the stories of families who can’t make that decision when their loved one can’t speak for themselves. The thought that always comes to mind for me is, it’s not really about you. It is supposed to be about their comfort, what would they have wanted? But people just don’t talk about what they want to do for whatever reason.
Calloway: What we try to do is help to facilitate the dialogue of goals of care. What are the goals of care for this family and for this patient? What are their goals for end of life? What does care quality of life look like for them? And that is a discussion that we try to facilitate. And then we put all the pieces to support whatever that is.
That’s unique for every patient and every family. On the hospice side, the reason why I try to have that dialogue with patients is because I know the services of hospice intimately. So, if you qualify for hospice, there’s a nurse that comes three times a week, there is an on-call nurse for that patient 24/7 who speaks directly to the attending physician, who’s the on-call hospice physician. So if the patient has an issue in the home – uncontrolled pain, agitation, changes in their mental status – then we can do that assessment. We can say, “Let’s try to treat that in the home.” Do they have a UTI [urinary tract infection]? Is there something else? Can we try to do different medications to keep them out of the hospital?
We also have our inpatient units. People tend to have the misconception that when they come to one of the inpatient hospice settings, like our Hubbard house, that they’ve gone there to die, which is, of course, not the case, either. We use those inpatient settings as, yes, sometimes it is end of life, but other times it’s a transitional place, so we might take them from the home, to our inpatient setting, to monitor them, to change their medications, and then put them back in the home.
Sometimes it might be a transitional place where they’ve been in home care for a period of time, they’re starting to decline, we need to do some adjustments and will bring them to the inpatient setting to do that. And it may be that they need to transition to a long-term care facility. So that inpatient unit provides several different purposes. Another is respite care. Respite care hospice patients are eligible for five days a month. Respite care is more for the caregiver and caregiver fatigue, to bring that patient in and have their time.
Douglas: For a hypothetical: I’m caring for a loved one. They are in stage four in some chronic disease that they’re not going to recover from ultimately. But I’m caring for them at home, though with visits from a nurse. But then, they could go into the hospice facility for up to five days? Just to give me a break?
Calloway: Absolutely. In what we have to offer in hospice, that’s just a facet of the clinical part. But it’s a multifaceted program where you have the social support, you have the counseling services, you have pastoral care. There are just basic needs that we help to connect to social entities, for example, anybody who may be without water, or electricity, or those things are getting turned off, or there’s an interruption of the services for a period of time. We actually have people who come up for respite stays because they’ve lost power in their home, providing oxygen, providing DME [durable medical equipment], and all of these services to connect these patients in end of life are really meant to improve their quality of life.
When you are accepted to hospice, they’re under the Medicare umbrella. So it’s a cost that is covered. There are no out of pocket expenses for a hospice patient. So it also helps the economic part for eligible patients that allows end of care, end of life care costs that are covered that would otherwise be out of pocket. So for many patients who qualify, and families are reluctant to enroll in hospice services, they end up paying out of pocket for all of that.
Douglas: What does it take to qualify?
Calloway: There’s a misconception that you have to have a referral from a physician. Anyone who wants to refer a patient or a loved one or themselves to hospice can call hospice and request for a referral. That means that they call, say they’re interested in hospice, and we have a hospice nurse do an assessment. Again, it goes back to more specific qualifying criteria — that the person has a life expectancy of six months without interventional care.
Douglas: What do you do for the families? This is a tough conversation. This is a tough situation to be in. Most people don’t, as we discussed earlier, want to face it?
Calloway: Hospice is there as much for the families as it is for the patient. Sometimes it’s there more for the family than it is for the patient. And often the patient is ready. They are ready to take that next step. They don’t want to go into the hospital again. They are ready to be comfortable, they want their end of days to look like something different than maybe it had for the previous six months. And so that’s where hospice is really for the families to help bring that dialogue so that the patient and the family are on the same page.
It’s almost like having a mediator to facilitate that dialogue. Our director of palliative services, Miranda Broyles, she’s incredible at this conversation, which is sitting down with the family and saying, “Okay, what did life look like a year ago? What did life look like six months ago? What does your day look like today, within the past few weeks? And what are your goals?”
The counseling, the bereavement, the social support, the caregiver relief, through respite services. Very often you’ll find that much of what we do is more for the caregiver than a patient.
Douglas: As you’ve described it, hospice care can last six months. Is there an end?
Calloway: There’s a reevaluation period, every six months, and as long as that person continues to qualify, then they are recertified. If they do not, if they, as I said, improve, and they graduate out of hospice, then they graduate out, there’s a transitional care that happens at that time for those people. They tend to come back into the system within a period of time, again, kind of a process.
Douglas: Is there anything else we haven’t discussed that you want to talk about?
Calloway: I think the takeaway is that hospice is much more expansive than what an individual’s perception is from hospice many years ago. The services that we have to offer are multifaceted. It does not mean a withdrawal of care. Patients stay on their medications, we do active intervention. Anything that is meant to improve the quality of life of that individual is part of what we do. It is a support system there that I think is underutilized. It’s an economic resource in end of life that I think is underutilized as well. And that’s what we’re hoping to do with the education piece.
In the next installment of our occasional series Windows into Health Care, health reporter Kara Lofton spoke with hospice nurse Lori Carter. Carter has been a hospice nurse for 20 years. She said for her and for many of the hospice nurses she knows, the work is a calling. She said some of what she does is straight-up nursing — managing pain, dressing wounds, and addressing symptoms of end-stage disease. But the most subtle part of the job is helping families navigate one of the most intimate and emotional times of their lives.
LOFTON: For you, when you think about hospice and the work that you do and being called to it, what does that mean exactly to you?
CARTER: Just being with the patient and the family in the most emotional time of their life. Helping them give each other that last act of love. I appreciate and I feel honored that I am with that patient and that family during that time.
LOFTON: So some people, and I’ve heard especially in Appalachia, can have preconceived notions about what hospice is and what you actually do exactly. Explain to me what you do. What happens when you go into a home for the first time and how does that relationship form?
CARTER: Well, depending on, you know, what is going on with the patient and how early or late in the disease trajectory that we get them, you introduce yourself and…you listen. The big thing is you listen…You can find out f there is struggle already between what is happening with the patient and how the family is dealing with that. Of course, you know, we treat any symptoms that the patient has. I mean, my job I feel is [to be] the patient advocate and just trying to palliate those symptoms that they have inside [so] that they are comfortable.
I find out, you know, is there any things that they want to do before they die? You know, what are they able to do? And I try to facilitate that in any way that I can. I have a bag of ramps in my car right now, [in] that a patient wanted some ramps. I knew that would be the last time he got to eat ramps, so I went and dug some up.
LOFTON: Some people think of hospice as giving up so, to speak. When you hear that what is your reaction to that?
CARTER: I think it’s very sad. You know, we all are going to die. We all are. And, you know, normally the patients that we get — they have already fought for a very long time. This is the last act of love that you can give and, you know, it’s going to happen whether hospice is there or not. And they are most certainly not giving up. I mean, they’re getting ready to go down a path that they’ve never been down either.
LOFTON: Has this work changed how you think about death?
CARTER: It most certainly has. My family was not the type that, you know, went to funerals all the time…I came into hospice blind, really. And I quickly learned that it is a special experience. You have to believe that quality of life is better than quantity.
And I tell you how I cope with things is I will walk into a home, and I will look…there’s always pictures on the walls of, you know, families. And I will look at those. I always do. And I can see what that patient looked like, and how robust they were, and how happy they were. And then I see the patient now, and that actually helps me know what I need to do and how I need to direct the family into what’s happening. You know where they are in this, this experience that they’re getting ready to have.
LOFTON: One of the things I think is interesting about hearing conversations around hospice, especially from providers in hospice, is that we hear a lot about a nursing shortage and yet, and like nursing turnover in hospitals. But hospice seems to have lower turnover rates. And people who become nurses in hospice tend to stay around despite being around death all the time, essentially. Why do you think that is?
CARTER: I think it is a calling. I think you do realize that it’s a special kind of nursing — you fall so much in love with what you do, and the families, and the patients. And I cannot imagine doing anything else. I don’t think it is for every nurse. I don’t. I think that you have a special belief and you want that special relationship with the patient and the family. I worked in the hospital and some nurses think that’s great, and that’s wonderful for them. But I didn’t feel, for me, that I could give the care — and the personal care, maybe I should say — that I wanted to. I just didn’t feel that I could do that. And with hospice, I can.
LOFTON: Does working with people at the end of life change how you live your life now?
CARTER: It does. You know, I have heard so many times from patients: ‘You know, I wish I would have done this or I wish I would have done that.’ I hear of their regrets. I see families and patients try to get over, you know, maybe they had been estranged, child had been estranged from a parent or, you know, a parent left and now they’re, they’re trying to make amends. I think …it’s taught me that I need to ask for forgiveness, not to have regrets, say what I need to say to my loved ones. So that when that time comes, you won’t have those regrets and those losses.
LOFTON: When you hear about things that people wish they had done, are there any themes that stand out to you that lots of people kind of have regrets with at the end of life?
CARTER: Oh, I think a lot of times it’s ‘I should have took that trip.’ ‘I shouldn’t have worked so much.’ ‘I should have spent more time with children or spouses.’ It’s those types of things that, you know, they wish they would have done. Things that may happen in life and you really don’t give it a second thought at the time. It seems to come back at the end of life, no matter how trivial it is — you, you remember, ‘I should have said this’ or ‘I should have done that.’ But hopefully for the most part, I think, you know, they may say those things. But again, it’s usually not big, huge things.
LOFTON: Over the last 20 years that you’ve been working in hospice, how has it changed?
CARTER: Well, when I first started, no one knew what it was. And now it is more mainstream. I think people are more, they understand more, what is happening. It — death — is not shunned like it used to be, you know. People talk about it more. Unfortunately with our drug problem, it has caused some problems for us. I have to count pills every time I go. I have to watch neighbors coming over to visit — we have to find a [secure] place to put the medicine. It used to be able to sit beside the bed, but it can’t do that anymore.
LOFTON: As more young people leave the state, are you seeing [a] smaller family group surrounding a patient at the end of life?
CARTER: I am. And I’m seeing, you know, a lot of times it’s the 90-year-old spouse trying to take care of the 90-year-old husband or wife. Family seems to live out of state a lot of times, and it has definitely caused some problems. Fortunately, we also have a long-term care team. And if the patient needs to be placed, they can still have hospice care. But there’s definitely a lot of family that are not local anymore…they’re looking to hire caregivers, [but] they might not be able to afford caregivers. In that case, we just try to ramp up our visits, and try to pull in anyone that we can possibly pull in to assist that family.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from Marshall Health and Charleston Area Medical Center.
Most Americans say they want to die at home. But without the right paperwork, many end up living out their final days in institutions or hospitals. The West Virginia e-Directive Registry is trying to change that.
The e-Directive Registry includes advanced directives, living wills, medical orders and Do Not Resuscitate cards. These documents help medical providers understand West Virginians’ end-of-life wishes, including where participants want to die and what kind of treatment they want in their last days of life.
In 2016, nearly half those who participated in the registry died at home compared to 36 percent statewide, according to the West Virginia Center for End-of-Life Care.
The issue is also an economic one. The average cost per patient per day in a hospital stepdown unit is almost $8,000 compared to $180 a day for in-home Hospice care, according to center director Alvin Moss. Moss says more than 4,000 registry participants died in 2016, which saved $45 million on health care charges at the end of life.
Editor’s Note: This story was updated 02/21/2017 3:36pm
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation, Charleston Area Medical Center and WVU Medicine.
Most Americans say they want to die at home when the time comes. But a new study suggests that the more obese someone is, the less likely they are to achieve that goal.
The study was published this month in the Annals of Internal Medicine and looked at the records of more than 5,600 senior citizens taking part in a long-term health study. The researchers looked at how body mass index – a measure of obesity – impacted use of and access to end-of-life services like hospice. hospice provides support to people in their final months of life – usually in their own home.
The researchers found that the more overweight someone was, the less likely they were to enter hospice at all. If the overweight seniors did enter hospice, they spent fewer days using the service than their less-heavy peers.
The study also found that the more obese someone was, the greater the cost to the Medicare system in their final days of life – despite the fact that they are using hospice less. The study’s authors say that may be because it can require more staff to take care of obese hospice patients. However, they note that Medicare hospice reimbursement is capped no matter a person’s BMI.
West Virginia has the second oldest population in the nation behind Florida. And more than a third of the population is obese.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation, Charleston Area Medical Center and WVU Medicine.
