The Excerpt podcast: It's time we talk about hospice, its costs and how to navigate it
On a special episode of The Excerpt podcast: Let's face it. Nobody starts their day thinking: I want to talk about hospice today. And yet, it's one of those topics that you really want to be prepared for. How much does it cost? Can hospice happen at home? What if I outlive it? All good questions that should be carefully considered before the need arises. Cara Wallace, a professor at Saint Louis University in Missouri’s Valentine School of Nursing, joins The Excerpt podcast to discuss when to consider hospice and how to navigate conversations about it with loved ones.
Hit play on the player below to hear the podcast and follow along with the transcript beneath it. This transcript was automatically generated, and then edited for clarity in its current form. There may be some differences between the audio and the text.
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Dana Taylor:
Hello and welcome to The Excerpt. I'm Dana Taylor. Today is Wednesday, January 24th, 2024, and this is a special episode of The Excerpt.
Somewhere near the top of a long list of subjects we'd all rather not talk about is hospice care. And yet, regardless of what we do, death is an inevitability for all of us, planning for perhaps one of the kindest and most important tasks we can undertake for our loved ones.
Recent news of Jimmy and Rosalynn Carter entering into hospice has brought the topic of hospice once more into the national consciousness and brings up critical questions that impact us all, what end of life care really means, how affordable it is, and what happens if a patient outlives this form of care. We're talking about all of these issues and more with our guest, Cara Wallace, a professor at St. Louis University in Missouri's Valentine School of Nursing.
Thanks for being on The Excerpt, Cara.
Cara Wallace:
Thanks so much for having me. I'm thrilled to be here.
Dana Taylor:
Okay, let's get right to it. First, what is hospice and how does it differ from other forms of health care?
Cara Wallace:
Hospice care is a service that patients can receive at their own home, and there are a number of things that it includes. It includes focus on both the patient and the family, and it's provided by an interprofessional team. So, there's a physician, there's a nurse, social worker, chaplain, there's often volunteers. Sometimes there are things, depending on the hospice, like music therapy or massage. And hospice is available around the clock, 24 hours, seven days a week. Now, that doesn't mean that someone's there at the home 24 hours, seven days a week, but people are available to answer questions anytime of day. So, if an emergency occurs in the middle of the night, somebody can pick up the phone and call their hospice provider, and a nurse can answer questions about what's going on and then send someone to the home to provide care if necessary at any time of day. Hospice also provides medications, supplies, equipment, and also follows the family into the bereavement period after a death occurs.
Dana Taylor:
Okay. Can you clear this up for us, is hospice care primarily about pain and symptoms management, or does medical intervention remain an option? What role does pain management play in hospice care in general?
Cara Wallace:
Pain management is really one of the primary focuses of hospice care. So, I like to think about it as hospice treats the person. It treats all of the symptoms that are there because of a disease process. And when you think about curative care, the focus of curative care is on treating the disease or the illness. So, that shift can kind of help you think about what is curative care, treating the disease, versus what is hospice care, which is treating the person and all of the symptoms that are there, including pain because of the illness that they're experiencing. And the focus is really on quality of life, how can we make this person feel the best that they can feel for the remainder of their life, whatever time that may be?
Dana Taylor:
Well, one misconception that some people have is that hospice is a place and that care is only provided in a facility. How much say do patients and their families have when it comes to receiving hospice care in a setting of their choosing?
Cara Wallace:
Well, the goal is to provide care wherever the patient lives, and that means that they're providing care in the home, or if they're already in a facility, they can provide care at the nursing facility. There is an option within hospice care, one of the levels of care is inpatient hospice care, and I think that's what people sometimes think of with this idea of hospice as a place. But that inpatient hospice care is actually very limited. It's very expensive compared to care at a nursing facility or at home. And the purpose of an inpatient facility for hospice is really meant to bring someone into the inpatient facility, control any major symptoms. When a patient needs that intervention of a medical professional around the clock, that can happen at a facility, and then the patient can return back to their environment, which could be home or wherever else they might call home.
Dana Taylor:
Is there a typical patient for whom hospice care is best suited? If doctors can't estimate when a person will die, as is more likely with chronic illnesses, is hospice even an option?
Cara Wallace:
There's a lot of evidence that suggests earlier hospice care is better. There are all of these major studies that have been done that compare hospice patients with non-hospice patients, and they match them by diagnosis, age, race, gender, and what they've found is that patients who access hospice actually live longer than those who don't access hospice care.
One of the challenges with hospice care is identifying when is the right time. And part of the things that makes that challenging is pinpointing that six month prognosis, which is a criteria for hospice care. And as you noted, that's more challenging for some diagnoses than others. With cancer, there's kind of that clear trajectory. Once treatment is, "No longer working," then it might be the right time to transition to a new type of care. But for some diagnoses like Alzheimer's, COPD, congestive heart failure, trajectory towards death is more like a roller coaster. So, it's not kind of this straight decline, and pinpointing when someone is within six months of death is just a lot more difficult.
Dana Taylor:
As we mentioned earlier, President Jimmy Carter and his wife Rosalynn both received hospice care last year. While Rosalynn has since passed away, the former president continues to receive hospice care almost a full year later. You've written that out of the more than 1.5 million choosing hospice services in America, half die within 18 days of admission. So, what happens when someone enters hospice care but doesn't die relatively quickly? What's the next step for those patients?
Cara Wallace:
Medicare really starts paying attention at that six month mark because of the way that hospice is framed within the last six months of life. After six months of care, a physician has to re-certify a patient every two months. And what that means is that a physician meets with the patient and really has to explain how that person still meets criteria, which is certainly possible. As a former hospice social worker, I have taken care of many patients who have lived much longer than six months and still remained on care until their death.
However, what happens when care really focuses on treating the person and instead of focused on solely treating the illness, people start to feel better. Many times, a patient's condition can stabilize, and that stability can be a bit tricky, because we no longer see the same trajectory towards death that maybe a physician saw when they first admitted the person to hospice, and without major changes in symptom or things that the hospice can kind of document that they're doing in terms of reporting decline of the patient, then Medicare might look at the patient and say, "Is this person really appropriate? Are they really dying in the next six months?" And that becomes trickier to determine. There are lots of studies that show, however, that many patients, when they are discharged from hospice, they actually do die within the next six months of the discharge.
Dana Taylor:
Well, Cara, I lost both my parents to cancer. I was my mother's primary caregiver. She received hospice care in my home. Every patient, every family is different, but can you share with us a little bit about how hospice workers assist families with administering care at home?
Cara Wallace:
I think a lot of it is just wanting to know that you're doing the right thing. One of the things that I did as a hospice social worker was talked with families about how to respond to a patient and how to talk with the patient about their wishes and their goals, how they were feeling. And this can be especially difficult if a patient is unable to respond with some diagnoses, or even as a patient gets closer to death. So there's a lot of the supportive aspect of just helping families, one, know what to expect as a disease progresses, and being able to answer questions about the patient's circumstances and illness and symptoms, and to be reassured that they're doing the right thing as they're providing that care.
But there's also a lot of grief that happens. I mean, when we think about grief, we automatically attribute it to an actual death. But there's something that we can call anticipatory grief, in that we're grieving as we're caring for someone and we're grieving from the time of a diagnosis. And so, having a group of professionals who can respond to the emotional aspect of being a caregiver is a really important aspect of what hospice can provide for families.
Dana Taylor:
When there are patients or families who may be hesitant to consider hospice care, what do you find to be their biggest concerns? And how do you navigate those conversations?
Cara Wallace:
There are really pervasive beliefs that hospice only equals death, and I actually did a study on this some time ago. I asked patients and families what their perception of hospice was when they first learned about it, related to the patient's diagnosis. And immediately people said, "The end of the road, death, nothing else could be done."
But then I posed the question to them after they'd been on hospice for a period of time, and I said, "Well, what does hospice mean to you today?" And their answers had nothing to do with death. It was about dignity, peace, the relationships that they formed with hospice providers. So, the experience of hospice care potentially changed that meaning for them of what hospice really was. And one of my roles as a hospice social worker was meeting with patients and families who were considering hospice care, figuring out, "What are your hopes? What are your goals? And is hospice the right match for you and your family?"
Dana Taylor:
So, between Medicare and Medicaid and private insurance, is end of life care affordable for most people?
Cara Wallace:
When we're talking solely about hospice care, affordability is a big point. Hospice care is generally 100% covered by insurance, whether that's Medicare or private insurance, depending on someone's age, or Medicaid. So, the knowledge that hospice is covered by insurance can be a big relief for patients and families.
However, as big of an advocate as I am about hospice care, that doesn't mean that it doesn't come with... End of life care generally in the United States, doesn't come with barriers or challenges. Hospice in the U.S. relies heavily on a familial caregiver, someone who's in the home or with the patient around the clock, that can do those custodial care types of things, make sure that the patient's can move around in bed or can get up out of bed with help. Hospice cannot be there 24 hours, seven days a week to do those types of things. So, there's a heavy reliance on family or a caregiver with the patient to be able to manage those types of needs. When there's not a family member available to do this, we know here in the U.S. how expensive that type of care is, whether that's a hired caregiver within the home or needing to look at options for long-term care.
Dana Taylor:
Well, this is not an easy topic for most people. How do you suggest that families, friends, and loved ones begin to have these conversations?
Cara Wallace:
There are some really wonderful resources out there that can help people think about how to approach this conversation, one of which is The Conversation Project. There's a website you can go to and it provides lots of materials about how to approach these discussions with your loved ones.
But again, I always advocate starting early. Figuring out what advanced directives are, what advanced directives look like, but it's not just about the paperwork, it's not just about having a medical power of attorney or a living will, because even if those things are in place, but you've never really talked about your hopes or your goals or your dreams or the things that are important to you, when it comes to the time of making decisions, families still report that that's challenging. And the more conversations that you can have, the better off you'll be.
Dana Taylor:
Thank you for joining us on The Excerpt, Cara.
Cara Wallace:
Thanks so much for having me.
Dana Taylor:
Thanks to our senior producer Shannon Rae Green for production assistance. Our executive producer is Laura Beatty. Let us know what you think of this episode by sending a note to podcasts@usatoday.com.
Thanks for listening. I'm Dana Taylor. Taylor Wilson will be back tomorrow morning with another episode of The Excerpt.