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.
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.
