Hospice Care in Utah:
A Conversation with Nancy Paulford

Mary: Good hospice can make all the difference when we care for the dying. Tonight, we're joined by the President of the Utah Hospice Organization, Nancy Paulford. She's here to tell us about hospice services in Utah. Thanks for being with us Nancy. Nancy, tell me how hospice care differs from traditional end-of-life care.

Nancy: Well, people used to die at home, but with advances in medical technology in the last generation or two, we learned how to prolong life for a very long time and the dying experience moved into the hospital where people found themselves dying in intensive care units, cared for by strangers, in unfamiliar surroundings, and connected to machines - things that they didn't want. The hospice movement began as an alternative to this kind of care. Hospice care is a service that is provided mostly in people's homes, and we provide comfort and support for patients who are living with a terminal illness and their loved ones. Hospice is provided by a team of individuals, both clinicians, who are experts in the field, and trained volunteers. The goal of hospice care is the relief of pain and suffering.

Mary: Okay, so it really does drastically change end-of-life care?

Nancy: Yes it does. It's taken dying back home.

Mary: Which is such a good point, because it's gotten very far away in some years. So who's eligible for hospice services?

Nancy: Well, to receive hospice care you have to have a terminal illness, with a life expectancy of six months or less as defined by your physician, and you have to be receiving treatment that's not aimed at curing your disease. So, comfort care.

Mary: What exactly do you do to help people whom are terminally ill?

Nancy: Well, the hospice team provides the education and support provided by the professionals and volunteers, but hospice also provides all of the medications, all of the equipment, and all of the supplies that we might need to manage the illness. The hospice interdisciplinary team is made up of obviously, the patient and family and their personal physician, as well as hospice nurses and physicians that are experts in pain management and symptom control. We have hospice social workers that help patients and families deal with the stress that goes along with living with a terminal illness. We have home health aids who provide personal hygiene care. Our hospice chaplain works with patients and families to provide spiritual support. We have volunteers that do a wide range of things for patients and families, and we have bereavement counselors who help support family members after the patient dies for the year following the death.

Mary: For the whole year afterwards? So it seems very comprehensive. So with all of these team members, do they all come to the patient's home? How does it work?

Nancy: Not all at one time. We usually send in the nurse first. If somebody's not comfortable, they really can't attend to any of their emotional or spiritual needs. So, our first attempt is to make sure that people are very comfortable, and then one by one people come and assess the situation, see what the family's concerns are, and then we develop a plan of care based on what the individual patient family's needs are.

Mary: Okay, and so you obviously have conversations with the families as well as the patient the whole way through.

Nancy: Oh, absolutely. The care is really directed by the patient and family.

Mary: Okay, and when you talked about the volunteers, tell me what kinds of things they do.

Nancy: I think that the best thing the hospice volunteers do is provide respite for family members. Respite is time away from the care giving responsibilities. They may choose to go to a movie, get their hair fixed, or maybe just get out of the house; get away from the situation for a few minutes or for a short period of time. Other things volunteers may do include running errands for people, providing companionship, reading to patients, spending time with children, helping to complete unfinished projects, those kinds of things.

Mary: I read somewhere where it was described as "these are the simple acts of human kindness."

Nancy: Absolutely.

Mary: These are things that people do, which is what you need more than ever at that point. I think people often don't realize how hard this is on family members. You talked about how volunteers give them a respite, give them a chance to take care of other things. Tell me how you deal with family members beyond the volunteers stepping in.

Nancy: Sure, it's hard work to care for someone who's dying seven days a week 24 hours a day. It's hard physically, and it's hard emotionally. I think the first thing we try to do is teach people how to take care of someone who's dying; what physical acts of comfort could they provide that would be helpful for their loved ones. We also teach people what to expect as the disease progresses, what symptoms we might experience, what issues or kinds of problems we might face. Knowing that what the dying person is experiencing is a normal part of the process really goes a long way to alleviate the fear and uncertainty that our family members feel.

Mary: Can you also help them navigate the whole medical system? That gets overwhelming for people who are going to recover, but if you're dealing with everything else on top of it, it can be almost debilitating, so do you help with that as well?

Nancy: Absolutely, and that's one of the beauties of having the entire team come and help people. Different professionals with different expertise can help with whatever the issue might be.

Mary: See, that's great. There's got to be cost involved with hospice, what kind of cost is that?

Nancy: Well, the Medicare hospice benefit, and in Utah there is a Medicaid hospice benefit, covers 100 percent of the cost for hospice care. Most private insurance or health plans provide hospice benefits. For people who don't have insurance, or don't have healthcare coverage, almost all of the hospice programs in Utah have some sort of financial assistance available.

Mary: Okay, and generally you said this occurs in the home, but what if you have a patient who doesn't have family, they don't have a caregiver, the kind of support they need in the home to bring hospice in. What happens to that person?

Nancy: When people don't have adequate caregiver support, usually they will end up in a long-term care facility or in a nursing home where they can continue to receive hospice services if there's a written agreement between the hospice program and the facility. The nice thing about that is the patient can receive all of the benefits of the long-term care facility as well as the expertise of the hospice team.

Mary: Okay, so you get everything. How do hospice care providers provide for themselves? That's incredibly emotionally draining work.

Nancy: Well, it's interesting because people who do the work of hospice have a calling to this area. We find it very important to tend to our own bereavement needs in addition to the bereavement needs of our families. Most hospice programs have an annual memorial service where we can formally acknowledge all of the losses that we have experienced in the past year. We also encourage our staff to take time away from hospice, get away form the work and to meet their own physical, emotional and spiritual needs. I thing it's really a healthy balance between working hard and playing hard that allows people to survive doing this work.

Mary: You need that kind of break. We've talked about grief in earlier programs here, and just how very difficult that is, and how everybody's different in that. What would you say helps a grieving family the most?

Nancy: I think that's different for everybody. There is no such thing as normal grief, and all sorts of manifestations of grief are normal, however that might be, for however long it might take. Talking about it either with your loved ones or a grief counselor helps.

Mary: Tell me how many hospices there are in Utah.

Nancy: In Utah we have 17 hospices that provide services throughout all parts of the state with the exception of the very most rural areas.

Mary: And can you just tell me briefly where those are?

Nancy: In central Utah, in the western desert. There's a lack of services down in the Four Corners area.

Mary: Finally, tell me how people can take advantage of hospice care. How do you access hospice care?

Nancy: Sure, I would begin by talking to your physician, or health care provider, or family and friends. Someone may have had an experience in working with a hospice program. If you have private insurance, who is the preferred provider? That would be important to know, and I encourage people to call hospice programs and interview them. Ask questions. What kind of care can I expect? How frequently will the staff visit? How will your physician work with my physician? How can a volunteer help my family in my particular situation? Whatever your individual needs might be, I would ask specific question about those.

Mary: So do some real shopping and ask a lot of questions.

Nancy: Yes.

Mary: Good advice. Thank you Nancy for being here, and if you'd like more information about hospice care in Utah you can call the Partnership to Improve End-of- Life Care in Utah at 888-918-4490 or visit the Web at www.carefordying.org. For KUED, I'm Mary Dickson, and goodnight.