Hospice: Bringing Care and Compassion Together

Roseanne Azarian: Welcome to Front Door, a My Place CT Podcast. MyPlaceCT.org is a free web-based resource from the State of Connecticut that helps people live life independently. It brings together information to help people live how and where they choose. Learn more at myplacect.org.

Hi, I’m Roseanne, the host of Front Door, where older adults, people with disabilities and the professionals who help support them come for information and inspiration. Subscribe to Front Door on iTunes or the Apple Podcast app, Stitcher, Google Play or wherever you get your podcasts. Front Door is a production of the Connecticut Department of Social Services and Mintz + Hoke.

In today’s episode, we explore hospice care, a topic that for many isn’t all that easy to talk about. But I think once you hear how hospice can help, you’ll feel differently, thanks to our guest, Tracy Wodatch, President and CEO of the Connecticut Association for Healthcare at Home. Tracy, welcome to Front Door.

Tracy Wodatch: Thank you, Roseanne. I’m so pleased to be here.

Roseanne: What is the difference between hospice and palliative care?

Tracy: Many people think that hospice and palliative care are one and the same, but they are not. Palliative care is a comprehensive approach to healthcare that serves the needs of a person with serious illness. The needs are their psycho-social, their physical pain, their emotional-spiritual pain, and it serves their needs from the start of the diagnosis of a serious illness all the way through, and it’s usually offered when the person is seeking curative treatment.

Hospice, on the other hand, is palliative care—it’s a form of palliative care—but it’s offered toward the end of life when curative measures have been exhausted. It’s still a comprehensive approach, a philosophy of care that offers a team that serves the psycho-social, physical, emotional, spiritual needs of the patient. But also, with hospice, you extend it beyond to the patient’s caregiver and family. And then the additional piece to hospice is that once that person passes away—the patient passes away—it also extends bereavement and grief support to the family and caregiver.

The important piece about hospice is, once the patient has decided to forego curative measures and the doctors agree that their terminal illness has a prognosis of approximately six months or less, then they can qualify for the hospice benefit.

Roseanne:  But both support quality of life, just in different stages.

Tracy:  Absolutely. The focus is all about quality of life. When someone’s seeking palliative care, they’re usually going through extensive treatments, and that can really wreak havoc with the physical aspects of their body and how they manage the treatments as well as the emotional and psycho-social pieces. On hospice, it’s all about quality of life and it puts the control in the patient’s hands and lets them make decisions about what they want and what they don’t want. It’s focusing on how to improve the life that they have left.

Roseanne:  So, take me through the process. Say I have a serious illness and it’s clear that I’m not going to survive. How can hospice help me and my family?

Tracy:  So, one thing that needs to happen first—the insurance companies offer different services for hospice. Medicare covers hospice, Medicaid covers hospice, and then private insurances; it varies. So, it’s important for the patient and the family to understand what their coverage is. But they should talk to the doctor and the doctor should work with them on providing a referral to a hospice provider within the state of Connecticut.

We have 32 hospice agencies in Connecticut. And one thing that I think is really important for people to understand, is that once you qualify—you have that prognosis of six months or less, and the team is going to help you—you don’t need to move from where you are. Almost 70 percent of hospice services are provided in the patient’s home. They are not…many people think that hospice is a place to go to. There are hospice facilities—there are hospitals, skilled nursing facilities you can go to. But nearly 70 percent get their services right in their home, so they don’t need to move. The team would come to them.

Roseanne:  Tell me a little bit about how you get started in the process.  Once you have coverage, what would be the next step?

Tracy:  So, the physician would make a referral to a hospice provider. The hospice provider would go out and make a visit. It usually starts with either the nurse, there’s also a social worker that may come out and explain the services that the patient and the family can receive. They elect—once the services are explained—they elect to go on the hospice benefit, and then the services begin.

Roseanne:  When does the family get involved? I would imagine from the beginning.

Tracy:  Usually the family is involved right from the start. It’s really, when I said a team approach, it’s a team approach from the hospice side, and it’s really looking at the team that is supporting that patient in the home or wherever they live. It could be the patient and their direct family or it could be a professional caregiver who’s been taking care of the patient in their home. It would be whatever their support systems are. The hospice really supports all of them.

Roseanne:  So, a hospice professional can show, if I’m a family member, show me what I need to do. I think a fear is that hospice is going to take over. It doesn’t sound like that’s so.

Tracy:  Not at all, no. The hospice team—and I can explain a little bit about the team that I’m referring to—the hospice team comes in and tries to help the patient and family live their lives the way they want to with whatever time is left. So usually the nurse would come in and teach the patient and the family about their medications, about how to move from the bed to the chair, how to take care of a, maybe a wound. The social worker would come in and perhaps help the financial needs or funeral planning, or referrals to the community that they may need for last minute, how to pay their bills.

A spiritual counselor would come in and offer any kind of spiritual guidance. If you have a connection in the community with a minister or pastor, they would connect with them and try to make sure that that’s smooth and coordinated. Then also we would have the medical director of the hospice, who really oversees the direction of the plan of care—what types of pain medication, what types of medication to help with anxiety or nausea. And then we also have that hospice aide, which is extremely important, who can help support the person with their personal care needs, their bathing and their eating, and teach the family what they need to know to help with that.

And then probably one of the most important pieces of the hospice team is the volunteer. Palliative care does not have a volunteer program under any kind of payment. It would be an extra. Hospice, it’s expected that at least five percent of your care provided in the services, provided under hospice, is provided by volunteers. And volunteers are well trained. Many times, they are people that have experienced hospice themselves and lost a loved one and they’re coming back to give back and to help.

They may sit with a patient so that the family can go out and do some grocery shopping. They may read, they may help write letters that a patient may want to write and leave for their loved ones. The volunteer is a really key member of the team.

Roseanne:  And from what you’re telling me, all of the people you’re speaking about really together make hospice care more or less complete care. I’m also struck by the fact that if somebody is doing something that I don’t need to do, I’m a family member, that gives me more time to be the person I want to be with my mom or my dad or my sister.

Tracy:  That’s absolutely the goal. We try to minimize the caregiver burden. We try to help the caregivers be who they need to be; to be able to be the mom, the daughter, etc.

Roseanne:  Tracy, we’ll continue our conversation in a second. I just want to remind our audience to subscribe to Front Door on iTunes or the Apple podcast app, Stitcher, Google Play, or wherever you get your podcasts. Tell us if you like what you hear and write a review—we’d really appreciate it.

Roseanne:  So, if I were a doctor, what advice would you give to me to help someone that I’m working with or someone that I feel is a candidate for hospice?  What can I say to them that could make them more comfortable with hospice care?

Tracy:  This is a very difficult area because we have a problem in the United States with not offering hospice soon enough. The median length of stay for hospice is just under 20 days, and that means that someone with a prognosis of six months isn’t getting hospice until the very end, when they could benefit from it much sooner. Congress is actually working on passing a bill that is going to work on mandated education because that’s really where it falls short. The physician needs to start talking about what services are available long before it’s time to make the referral to hospice. If this bill passes in Congress, it will mandate training on how to have conversations, how to have them earlier in illness, the importance of the differences between palliative and hospice care.

And it will go to all of the professional schools, whether it be nursing, medical schools, social workers, etc. and it will require some training in physicians’ offices. But physicians really, if they’re comfortable, and many of them aren’t, need to start talking about hospice as an option very early in serious illness so patients and families know that they can ask about it later on when maybe the physician doesn’t think it’s ready but the patient wants to know, can I ask, let’s move this along.

Roseanne: Well, one of the benefits to hospice in general is that there are no surprises. At least the family, and the person as well, can anticipate what’s coming, and that gives somebody peace of mind. But also, they feel like they’re more in control.

Tracy:  Yes, absolutely. There really shouldn’t be any surprises. I think one thing that’s important data-wise is that less than ten percent of deaths are sudden deaths. Greater than ninety percent are due to advanced serious illness. So, it really gives opportunity for that physician to have an open time with their families and patients to really discuss, well this is dementia; this is, you know, chronic respiratory disease; this is heart disease; this is cancer—these are the things that are going to happen during this disease. And eventually we can offer you the services of hospice. Let’s make sure that we talk about that throughout the illness so that we’re serving your needs.

Perhaps one of the most difficult things about the time in which to refer someone to hospice care is that neither the physician nor the patient or family feel comfortable bringing the topic up. I want to share one of the most personal experiences that I’ve had with hospice care, and it had to do with my mom. Back in the ‘80s, she was diagnosed with breast cancer, and for eight years she worked with her oncologist on treatment on and off, had been in remission for a while.

And then toward the end of the eight years, she was going in and out of the hospital and really struggling with the side effects from the disease. Her oncologist and my mom had such a good relationship with each other, but neither wanted to approach the topic of, well what now? What next? When is it time for me stop treatment?

Because of my experiences, my work experiences, I felt very comfortable talking to my mom about that, and she said, “I don’t want to keep going back to the hospital. I don’t want to keep getting treatments. So, I really think it’s time to stop.”  And I told her about hospice care, and she agreed, and so I approached it with her oncologist, who I think was a little uncomfortable and still wanted to push a little bit more on treatment.

I think for my mom it was a relief because we opened up the door and had the conversation, we made the referral to hospice. My mom was born in the home that she still lived in and she wanted to die in the home that she still lived in. So, we worked hard to move hospice forward and her oncologist remained the primary focus for her plan of care, and she offered her comfort and even came to the home to visit with her, and I think all of us were much more comfortable. My mom died at peace, and I know it’s difficult for people to understand, but my mom had a perfect death. She was comfortable, she got to say goodbye to everybody, thank you to the doctor, and she was at peace.

Roseanne:  That’s just beautiful. It’s a very important subject and one, as we all know, we don’t want to talk about, but you certainly made it easier today. Thank you so much, Tracy, for coming in.

Tracy: Thank you.

Roseanne:  If you want to explore hospice further, visit MyPlaceCT.org.

Thanks so much for listening to Front Door, a My Place CT podcast. Please subscribe, rate, or review the show on iTunes. And you can access all the episodes as well as transcripts and the show link at MyPlaceCT.org.

Again, I want to thank Tracy Wodatch, President and CEO of the Connecticut Association for Healthcare at Home, for sharing her time with us.

So please stop by Front Door for our next episode. And remember, our door is always open. Front Door is a production of the Connecticut Department of Social Services and Mintz + Hoke.

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