Palliative Researcher Oliver: Family Caregivers Are Also Patients

In many instances, hospices will not be able to provide care if patients lack the support of a family caregiver.

Debra Parker Oliver, a professor in the division of palliative medicine at the Washington University School of Medicine in St. Louis, is currently researching behavioral interventions to enhance the lives of caregivers for family members with advanced illnesses. Her work is informed not only by her career of more than 20 years as a hospice professional, but also by her experience as a caregiver for her husband. 

She recently spoke about her work at the American Academy of Hospice and Palliative Medicine (AAHPM) annual conference.

In recognition of November as National Family Caregiver’s Month, Hospice News sat down with Oliver to discuss the challenges that caregivers face, how this impacts hospices and their patients and the types of interventions that are showing promise.

You’ve personally been a caregiver yourself. How did that experience help form your perspective as a professional in the field?

I had been doing research in this area even before I became a caregiver. So I had that to inform my caregiving. And then, when I did it personally, it went the other way too. So it’s been a back-and-forth within my career.

As a researcher, I knew in my head what the experience was like and the toll that it took on caregivers. But once I went through it, it was in my heart.

Because I had personal experience, and the numbers and the research made even more sense. I had a colleague ask me during that time if I was going to be able to continue to do that kind of research given what I was going through, and I said, “Are you kidding, I’m even more passionate now than I ever was because I understand it so much better.”

I knew caregivers who had a reluctance to get pain medication, and that’s a frustration for hospice staff. I knew that there was nothing wrong with giving pain medication, and I didn’t want my husband to be in pain. But I also found out that at the very end of life when you’re giving it like every hour, it is very unnerving. I came to understand this reluctance is in a whole different way.

I understand that some of your recent work has been focused on behavioral interventions designed to improve caregivers’ quality of life. Can you provide more details about that work and the types of interventions you’ve been investigating?

We’re actually involved in four different clinical trials right now testing different interventions. The first one is with caregivers of Alzheimer’s patients that are in hospice care. We’re using a Facebook platform, and we give prompts to caregivers about different issues that they’re facing, like, “Tell us something that hurts.” And they’ll post pictures that represent their response to the questions.

We had one lady, for instance, post a picture of a bunch of different bills and expressing her financial pain. We had somebody else post a really interesting picture of a tree with blooming tulips. This was actually a bereaved person, and they said that because their person had planted those tulips it reminded them constantly of them.

The whole goal of that study is to help people find meaning in the caregiving experience and to share that with one another.

The second one we’re testing is an online educational and social support intervention. Using Facebook, we made a series of six professional videos. They’re tele-novellas; they use dramatic stories to inform people. We found that much more effective than a simple homemade PowerPoint, kind of educational thing.

They follow the story of this family that goes through hospice, and then we prompt with questions. We supplement that with additional resources and articles and things. It allows the caregivers to then speak to one another. Our focus there is to reduce depression and anxiety.

We just finished the analysis of that study, and actually, we did significantly reduce depression.

Caregiving is a very isolating experience, and they’re also not trained. So we’re accomplishing two goals there.

Another intervention we’re working on is what we call problem-solving therapy. It also is with caregivers of Alzheimer’s patients, teaching them to be better problem solvers. This in turn allows them to be better communicators with their hospice team. We’re also finding that addresses both anxiety and depression for those caregivers.

Then finally, we’re doing the same kind of thing with problem-solving in palliative care, trying to move our research up upstream outside of hospice a bit. And again, we’re having roaring success. Now, we haven’t done the analysis yet on these, but we get amazing letters back from caregivers saying how valuable the intervention is. That’s what we’ve been working on really hard recently.

It sounds like these projects are ongoing, of course, but are you able to share more about some of the more important things that you’ve learned thus far?

One of the most surprising things early in our research was that we learned that about 30% of caregivers, upon admission to hospice, are self-reporting symptoms of moderate-to-severe anxiety and depression.

When you think about it, 30% of any kind of occurrence, that’s pretty significant. It doesn’t get a lot of notice, and yet a third of the people are having this. It’s not routine to assess caregivers for depression or anxiety — or anything for that matter. All the attention is focused on the patient.

And yet, we’re finding that there is a significant problem.

The other really significant issue is how caregivers feel so ignored. They are so surprised when we approach them that this research is for them. They’re used to everything being targeted toward their patient.

When we first open the can of worms, so to speak, when we’re talking to them, stuff just comes flooding out, because we’re the first people to ask them how they are and how they’re doing.

Getting people to share is not at all difficult. They are anxious and willing to do that. I think the other thing we’re learning is that it doesn’t take much to make a big difference, because they are so neglected.

That is just the value of asking how they are when nobody else doe. That is a big deal, and none of our interventions are super fancy or very expensive to do. Yet they’re having an impact. Those are all really surprising and valuable lessons.

We often hear this kind of general term “caregiver support.” Caregivers do need support, but how do we make sure they’re getting the right support at a sufficient scale?

It all starts with assessing them in the same way we assess patients. How do we know that we’re managing patients’ pain? Well, we measure it. We assess it every visit and we measure it. We’re not measuring anything with caregivers, and that’s true in any part of the continuum of care.

Health care providers are giving really good patient-focused care, but we’re not doing what I like to call family-centered care. There’s not even a place in most medical records to document that. And yet, if the caregiver fails, we’re in trouble. So I think it all starts there.

It also starts with teaching and instilling a philosophy within medicine that there are two patients, not just one, and that the caregiver, the primary caregiver especially, is also a patient that needs attention. But we’re not teaching that. That’s not a part of the philosophy. You can’t bill for that.

As I said, there’s no place in the medical record. It’s not a part of our culture. We just kind of expect people to do this.

Nobody even asked the caregivers if they’re willing to do it. Most of the time, it’s just assumed that they’re going to do this. It’s just assumed that they’re going to leave their job to do this and that they can afford to leave their jobs. Teams create plans of care, and they just assume the caregiver will do whatever needs to happen without any education without training — and often without any validation.

People rarely say things like, “You’re doing a great job.” I bet I was told that maybe three times over four years. But to make sure that we’re doing it right, it all starts with just measuring it the same way. For any other kind of care that we delivered, the only way we know is quality assurance, to check if it’s a standard, if we’re measuring it and if people are held accountable for it. And none of that is the case.

To the point that you just made, “If the caregivers fail, we’re in trouble.” What kind of consequences would you anticipate if no changes are made to the status quo, given the number of people that are being put in this position of being caregivers?

Our hospice program of care in this country was built primarily on the idea of home hospice, and that people are going to die at home. And that’s on the back of caregivers. That assumes that you have somebody at home who’s willing and able to take care of you. And if we don’t make that happen, those patients end up in the hospital or they end up in nursing homes. And the caregivers often will end up in the hospitals.

I bet almost any hospice can tell you that they’ve had caregivers die before the patient from the burden of doing the caregiving. And then what do you do? The hospice team has a whole other problem on their hands, and the patient usually ends up in a hospital or an inpatient facility of some kind. 

So building our health care system on this idea — and it’s true, not only in hospice but in any home care and child care. We just assume that the families are equipped to keep a person at home, but we don’t do anything to make that happen. Not all families are able to do that.

You’ve touched on this in your remarks, but just in case there’s more to add, how might some of those consequences further impact hospices and their patients?

Caregivers are very strained. They are severely strained. Those last seven days are really tough. The patient is completely dependent. They’re probably not able to communicate very well. They’ve got symptoms that are going crazy, and caregivers are trying to keep them and maintain them in the home.

If the caregiver is not sleeping — if the caregiver doesn’t understand how to give the medication or isn’t comfortable with it, if they have no support from their families — there is no relief. Even if the hospice is coming in every day, which is a stretch, they’re coming in for like an hour.

It’s worse than the severe new parents undergo with newborns. They’re a lot younger usually, and sometimes [with caregivers] we’re talking about pretty old people. I was in my 50s. Every day I thought, “If it’s this hard on me, what in the world is it like for somebody who’s 30 years older? How do they do it?”

Because you sleep when that person sleeps. By the time you get to rest, you’re not totally sleeping because, just like a new parent, you’re listening. I slept at the base of the recliner. My husband was only comfortable in a recliner and I slept on the floor with a mattress that we just dragged in. I had to wake up in order to give him his medication or when he woke up on his own needing something.

In the final 24 hours, it took two daughters and me in order to care for him. It took all three of us to give him the medication because of how difficult it was to administer. If you can’t do that, the only alternative that we have in our system is to pick up the phone and call somebody, to go to the emergency room or go to long-term care.

I worry about sharing how hard it is because honestly if people knew how hard it is, I worry that they would be even less willing to do it. They would be so afraid. People step up to the plate and can do more than they think they can do. But this is why it has physical ramifications far after the patient’s death because your body is going through hell for an extended period of time, especially they’re at the end.

We find that caregivers end up with more chronic diseases. It impacts mortality. It impacts their weight, and for those that have chronic conditions anyway, they’re all made worse. We know the problem. The research is clear. There are a ton of studies out there showing the negative effects of caregiving. There are a couple of studies that talk about some of the positive joy that it brings. But we got a lot that describes the physical, emotional, the financial toll that it takes, and we don’t have any real investment in order to make it different.

I see where you’re coming from. I was asked to speak at a virtual webinar a few weeks ago on this issue, and I wanted to be honest about how difficult the caregiving experience is. But I also feared that I was talking people out of caring for their loved ones.

We’re running into a problem in hospice in that the people who are reviewing the claims don’t have an understanding of how hard that is, especially if the person is in an inpatient hospice. They operate under the assumption that this is just what’s supposed to happen.

They’re saying that you can’t have inpatient care because the patient is dying or doesn’t need the care of a physician or the care of a nurse. It is skilled care even when you have no skills, and you have no license, but you’re doing this 24 hours.

Part of my new research is interviewing people on what those final hours are like because we need those stories just so our regulators can understand that this is the hardest time. To deny people the opportunity to do something because they haven’t slept in three days, or to have someone die outside of the home is a tragedy. And it’s causing all kinds of problems.

We have an inpatient hospice unit at our university, and at times you have to go to families and say, “They’re kind of stable, so Medicare is not going to allow this or pay for this. You’re either going to have to pay for it, or we’re going to have to try to get them home.” And the patient literally dies hours later.

We’ve got some real misalignment and a real lack of understanding. It sounds easy, and it sounds so beautiful for somebody to die in their home — and it is beautiful. It really is. But there is nothing easy about it.

The number of easy deaths is very, very low. But nobody wants to talk about that. We don’t want to talk about dying at all, let alone how awful it is at the end.

Where do hospices come in when it comes to caregiver support, and what can they do now to support them within our current system?

At of the end of the day, the danger of the per-diem structure is that hospices are supposed to deliver all the care that a patient and their family need for that sum of money. You can argue as to whether it’s enough money or not. But what we’ve got happening is many hospices sacrificing the psychosocial services and almost rationing them.

I was a hospice manager, and I had the philosophy, first, that social workers are a lot cheaper than nurses. And secondly, nurses are best at doing nursing, and social workers are best at doing social work. What’s happening is we’ve tightened up the productivity of social workers, and spiritual counselors as well, to such a degree that I have had hospices tell me that they can only make a visit once a month.

If you’re making a social work visit or a spiritual care visit once a month, and the average length of stay in a hospice program is 60 days at its best, the families are not getting those services. And those are the services that the caregivers need.

The number of visits is based, supposedly, on an assessment. We’re not doing that with caregivers, and that’s what needs to happen. Is that an additional cost? Perhaps, but also maybe not. Maybe by dealing with that with a social worker, you’re lowering anxiety. You’re lowering depression, and maybe you’re not going to get so many calls at night. Those are the kinds of costs that are really difficult to do research on, and there’s not been much done.

We need to do that [research]. Somebody needs to be in charge of the hospice team for the caregiver. It needs to be their job. I propose that is the social worker. They need to do regular assessments with standardized instruments that we know work, and they need to provide their care based on those needs in that assessment. It requires no additional regulation. That requires a hospice committed to doing it and some social workers trained to do it.

Have you seen the National Strategy for Caregiver Support recently released by the U.S. Department of Health & Human Services? If so, what were your takeaways? What were your impressions of that document?

It’s a beautiful document. It’s lays out some great principles, I really like that it deals with diversity, equity and inclusion and cultural things like trauma. It certainly identifies the broad spectrum involved in caregiving. Those are all very positives, and it brings some attention.

Granted, it hasn’t been out very long, only really a few weeks. But also, it’s got no splash. You don’t hear people talking about it within the industry. I’ve just been at some state meetings, and I was just at a national meeting, and there was silence. Nobody’s talking about it.

It’s also it’s not well-grounded in research. You look at the references, and there are very few, and a lot of those are regulations. They’re not science, and there is a science now around caregiving.

It’s interesting that it involves a whole lot of different agencies, but the only agency that I see doing something in there is actually the National Institute of Aging. A lot of others are going to collect data. They’re going to build data banks. There’s a whole lot of that. Great, let’s continue to do that, but let’s do something. We already know there’s a problem.

And I’ll give it to the National Institute of Aging [NIA] in that they’re making a commitment to increase research in order to solve the problem. They are funding behavioral interventions. They’ve got a huge commitment to Alzheimer’s research, which is great, but where’s [the National Cancer Institute]? Where are all of the other National Institutes of Health? I didn’t see them in there, and I was looking. I’m not saying they’re not, but they are not as present. NIA is all over the document in many different places, and I think that’s really good.

The other thing that bothers me a little bit about it is they go off on a tangent of talking about how we don’t have enough of the workforce. All of that is true, but those are different problems. They’re going to require a different solution. As hard as it is to be a professional caregiver, and as hard as it is to find them, they are at least getting paid.

Family caregivers are going into the hole because they’ve given up their jobs and put their lives on hold. Those are different problems, and they’re in the same document.