Hospice: Care and Comfort for the Patient and Caregiver

Welcome, everyone. I'm Dr. John Whyte. I'm the Chief Medical Officer at WebMD. If you were diagnosed with a terminal illness, have you thought about and discussed with your family how much care you'd like to receive? What type of care you want? And where you would want that delivered, whether you want it at home or in a hospital? And have you thought about hospice? If you're like most people, you probably haven't.

And my guests today are working together to raise awareness of hospice care. Joining me is Tom Koutsoumpas. He is chairman of the board of Capital Caring Health. And Sharon Casey. She is chair of the board of the Washington Home Foundation. Thank you both for joining me.

Good morning, John. Thank you for having us.

Well, I want to start off and maybe we could just give a quick reminder to our listeners as to what do we mean by hospice care, because we know there's a lot of misconceptions about that. Sharon, what should listeners know?

SHARON CASEY: It's important to know that hospice care can take place in one's own home or, in a relatively small number of cases, there are inpatient facilities that provide around-the-clock hospice care in certain situations, where pain or symptoms are more difficult to control and the family caregivers can't really cope with the situation at that point. But hospice can prolong the life, the last weeks or months of a person's life, because they're more relaxed in their own home, their pain and symptoms are managed well, and they have an interdisciplinary team of people, not only medical personnel, but chaplains, social workers, whatever they wish around them and coming in and out and making sure that they're comfortable and feeling as good as can be the case under the circumstances.

Tom, we know people wait a long time.

Yes.

Why?

Well, I think a lot of it's a bit of a misperception and a misunderstanding of what hospice really is. I think as Sharon just explained, first of all, most of it is in the home. And so often people think it's a place to go. And in 97%, 98% of our care at Capital Caring Health, for instance, is provided in the home. And so I think that's a big misperception. We come into the home with the team that really provides all of the support for patients and their caregivers.

So it's a really comprehensive care delivery model. But it's very misunderstood, because people think it's a place to go.

Sharon, what's the goal of this awareness campaign?

Well, certainly, it's in a way two-pronged. We're focused on raising awareness to-- this sounds strange-- but too medical personnel, to doctors, who are a major referral service or source, I should say, of explaining to patients and their families that hospice may be the best option for them at some point. And doctors, many doctors are very reluctant to have that conversation, because it's a very difficult conversation. And in some ways, it implies to people that the doctor, the medical community is giving up on saving the person and providing treatment.

So it's a hurdle to cross. And a lot of the older doctors especially have not had the training in medical school and awareness about hospice as they've gone along. And they just have established their own way of dealing with it, which is often just not dealing with it at all.

So the families, the second prong, is, of course, really all adults in the DC area that we want to make them aware, not only patients or potential patients, but their family members and caregivers, who are influential in the decision. And we decided to do this during the holiday season of Thanksgiving through the end of the year, because many families are coming together in this time. And they're confronting the reality of a loved one's situation. And therefore, it may be a good time for families and siblings to be able to talk in person about the next steps for their loved one.

So Tom, how do you start that conversation? A lot of folks may be listening, and to Sharon's point, it's hard to bring it up. So do you have tips for viewers to say, this is how you might broach the topic?

Well, certainly, people who have been recently diagnosed with a terminal illness, that's a natural place to begin the conversation. But I think as people talk about their end-of-life wishes, it's important to have conversations with your family to talk about the things that you would like, the things that you wouldn't like.

And Sharon, you've talked about people being in their own home at end of life. Now that doesn't work for everyone for a variety of reasons. But there's also the opportunity to provide hospice care in a hospital setting. Is that correct? Can you explain that?

Yes. Actually, my organization, the Washington Home, which is now a private charitable foundation, was founded in 1888 as the Washington Home for Incurables, which is-- would not be something that would be a term used today. And we were actually the organization, the church ladies were taking people off the streets who had communicable diseases like tuberculosis and caring for them in a house.

So that really started, I think, the hospice activities in the United States way back then, although it was not called hospice then. So that was what our organization was doing for decades and decades. And we had an inpatient hospice within a building that had a nursing home, long-term care, and rehab. And so we were-- and we also had dementia care.

So we had the inpatient wing of the hospice for many years for people to come when they didn't have someone to help them in their own home. And the in-home hospice care was not doable for them, because it's not 24/7 care most of the time. It's people coming in and out. And so that's what we established. And we closed our organization and became a private foundation 3 years ago. And we have collaborated with Capital Caring Health to open an inpatient hospice facility on the campus of Sibley Memorial Hospital in Upper Northwest, DC.

Now we're talking a bit about the Washington, DC area. But both of you are really trying to create a model of awareness for the entire country. So Tom, how is that going to work, right, because there's a lot of competing interests that people have when it comes to health? They're concerned about their financial well-being. They're concerned about housing issues. How do we get their attention now? Because you've also pointed out, we don't want to wait until people are terminally ill to start to talk about people's wishes, to talk about the family and the role in caregiving.

So this is a very interesting campaign. And I was excited to talk about it. But boil it down to the brass tacks.

And it is a national issue. Washington, DC, is an example, but we have the same challenges throughout the nation. So I also have the privilege of serving as the CEO of National Partnership for Healthcare and Hospice Innovation. It's a group of 100 not-for-profit community-based programs. And the NPHI community-based programs are all engaging in their local communities to do the same thing to get the word out to begin the dialogue.

A couple of things that I was thinking about as we've been talking, another issue that we have is getting patients too late. There's also a misperception that hospice is at the very end of life. It's just 2 days or 5 days or 7 days. But that's also not the case. And it's really been interesting to observe President Carter. President Carter, who's now been in hospice over 6 months and is really, his family is really getting the full support, he and his family of hospice care the way it should be. And I think that's an example that we want to talk about in this campaign.

One, awareness of the availability of hospice. But two, that it's not something that's brink-of-death care. The best approach to get the best out of hospice care for the family as well as the patient is to get in earlier in the process. We also see that when patients get in earlier, they often live longer, because they get that full range of support that they wouldn't have otherwise. They're not rotating in and out of the ER or in and out of the hospital. They're at home with their loved ones really getting the kind of support that provides the best kind of care at the end of life. So we're all engaging in the same kind of initiative throughout the nation.

Sharon, but if there's one critical element that you want people to leave this interview with as, it relates to hospice care, what would it be?

It's very important for a patient, a terminally ill person, and their family members to learn about hospice before it becomes a crisis situation and to be able to talk about it in advance and have the basic facts. And also, to understand that, I think Tom referred earlier, many people do not know that the hospice benefit through Medicare or Medicaid pays for almost the entire cost of the hospice care. So that's very important. I think a lot of people think that it's going to be expensive for them to utilize the hospice care.

It's a very good point. And then, Tom, where can people learn more about this awareness campaign?

Yeah. Certainly, if you Google capitalcaring.org, you can read about the kind of care that is provided, look at the availability and how to enroll in hospice. So that's really the easiest thing to do. And then NPHI actually has a toll-free number for the community-based programs throughout the nation. And that number is 844-438-6744. And through that number, you can find out throughout the nation about the availability of community-based not-for-profit hospice.

Well, Sharon, Tom, I want to thank you for raising awareness of hospice care, not only in the District of Columbia, but the entire country as well. So thank you.

Thank you so much, John.