A Conversation with Lo Pendleton, Social Worker

Q: For people who've never heard of hospice, what is it?

Lo: Well it's a form of end of life care for the terminally ill, meaning having six months or less to live as determined by the attending physician. And of course the whole driving factor behind Hospice is comfort care. But it's also based on quality of life. Many people think "Oh, terminally ill, doom and gloom," but it doesn't have to be that way. It means obtaining comfort so that maybe you can have more quality of life than you've had before. We are a lot about quality of life, just not a long term quality of life.

Q: Who makes up the hospice team?

Lo: The hospice team is made up of the medical director, a team of nurses, a social worker like myself, a chaplain, the hospice team manager, the hospice director and volunteers. Volunteers are a very important part of the program as well as the nurses aids that provide a lot of the personal care.

Q: Describe how the hospice team works together.

Lo: In many cases we will make joint visits. For example on an initial evaluation or admission visit, it's usually the nurse that goes out to the home. But when there are red flags, like a psycho-social or emotional issues that are presented up front, then I may go out with the nurse and we do the admission together. In many cases, we will have family meetings where the social worker and nurse will meet with the family. These meetings can also include the medical director as well. I think this teamwork serves to create a balance--because in many cases, families will have medical questions as well as emotional issues to deal with. The bottom line is we want to keep a handle on what the comfort issues are. If we don't have the patient's physical comfort handled, it's very difficult to deal with the other issues–emotional or spiritual, because if they're fighting pain, they're not going to be able to spend much energy on the other important issues.

Q: Why is this team approach needed?

Lo: Because I think there are so many different aspects of dying that are involved. The biggest one that seems to stand out the most is comfort care. The terminal process a involves a lot of different physical symptoms. And I think we have to treat those up front before we can begin to treat the other aspects. The spiritual aspects, psycho-social, emotional, family dynamics, all that.

Q: So you're pretty much treating the whole person.

Lo: The whole person. And the whole family. Which is part of that person
The family is a big part of the person and their history, the dynamics. If there's unfinished business between people, it can interfere with the patient's comfort if there are any big issues–anything unresolved.

Q: What's your role as a social worker?

Lo: It's often practical in terms of advanced directives. Many people do not have those in place, so I'll teach them and walk them through that part. Other practical things involve caregiver support. Patients and families don't often see what's going to be happening down the road, and so they usually don't have a real plan in place. And I'll help walk them through that in terms of gathering family together, other community resources, as well as the resources that our hospice has to add to the package. Another practical issue is funeral planning. Many of us put that off. Sometimes we would put that off until the last minute. And people that do that find that it's more of a frantic time, right towards the death itself and after the death and we don't always have the focus and energy to put those things in place. So sometimes we broach that subject too.

Q: It sounds like you deal with a lot of the nuts and bolts issues that people might be uncomfortable with.

Lo: Right, And I work at helping them give themselves permission to go there. It can be pretty scary for a lot of people, because it means the patient has to admit "I'm going to die," and that's a tough thing to talk about. But that's the practical side of my role. I think the larger part of my role has to do with emotions, a family dynamics, unfinished business, anything that helps the patient and family prepare for death. That's a huge part of my role.

Q: I know we each face death in our own way, but what are some of the common emotions found in the dying process?

Lo: Denial is a very common emotion that patients and families experience, and I consider that to be a very normal part of the process. It's part of how we protect ourselves from facing too much too soon. But it can also get in the way. It can be a roadblock. It can get in the way of preparation. Sometimes we have to gradually pull families through that issue so that they can get to the reality of the death and what surrounds it.

Q: Lets look at how denial applies to the families in the documentary. Rick Rydalch, for example, often says his illness doesn't seem real to him. What's the dynamic there?

Lo: I think a from the word go Rick did deny the reality of his illness. And I think Jeannett, his wife, has been very accepting, very realistic, and it's been frustrating for her. She wants Rick to come over to her point of view. But the difficulty is that it's not just denial itself. It's his disease process. He has a brain tumor and that interferes with his ability to process what's going on with his body. So I think it's a double edged sword. On the one hand, he's definitely in denial, but on the other hand, his cognitive ability is diminished by the brain tumor. So I don't know that we'll ever bring them together on that issue. But that has been frustrating for her. And for him, in his own way.

Q: In his case, is there really anything you can do to help?

Lo: Well I think there are things you can do. You have to deal with it on a more simple level. You have to get more concrete with Rick I think. I think there was a mini-breakthrough recently where Rick admitted that he might be dying. A tough step for him, but I think it helped Jeannett to see that. I don't know that it would have any permanency with him because of the brain tumor. He may wander back and forth through denial and reality, denial, reality.

Q: What about the Cook family? I know Ralph has said that in dealing with the uncertainty of his wife's health that he feels as if he's the boy in the tale "The Boy Who Cried Wolf". Karen has been near death and then rebounded so many times that he feels that maybe the wolf, or death, will never come. Is that also a form of denial?

Lo: I think that's a very common a reaction--to have two warring emotional sides. One denial, one acceptance. A bargaining if you will between the two and I think that's very normal. It's going to be interesting to see how that plays out; as time goes on we would continue to normalize what he is going through and allow him to process that. But in their case, I think the life expectancy initially was much shorter than the reality. And it's tough to be in the position of waiting for the other shoe to drop. You tend to want to turn that off. You can't exist in a constant state of agitation, you've got to have some normalcy too. Ralph does cope by working and really focusing on that. And I think that allows him to take a mental, emotional break from what's going on with his wife, Karen.

Q: What about the Jones family, where are they in the emotional process?

Lo: I think that a they're in a good spot, as good as they can be. In some ways they've gone the roller coaster route emotionally like most of our families do. They seemed to be quite accepting from the word go. But that's not to say that it's been an easy ride by any means. It's tough dealing with the range of emotions--anger, frustration. Cary mentioned to me one day that she felt as if she was in denial. I had to respectfully disagree with her because she has always had full knowledge of her illness and the eventual outcome as well. I think she's been in a spot where she's wanted to have some quality of life so, she has focused on those creative things–family, quality time, time with her husband taking trips and so forth, it has been vital to their marriage. And she's devoting a lot of energy to that. I don't think that's denial at all. I think that's grabbing a hold of life and milking it for all its worth and getting a lot of wonderful time out of it.

Q: Cary has had time to deal with her diagnosis. I know that's rare in hospice care. What does a more typical case look like in terms of a time frame?

Lo: I guess that's one of the frustrations , from my point of view, and I think the rest of the team has experienced some frustration with the lack of time to work with patients. The average length of stay on hospice is only about twenty days. It's pretty hard to get in there with just three or four weeks of time and deal with all the issues–the comfort, controlling the pain, the spiritual, family dynamics and unfinished business. And why that happens may be a matter of lack of education. We need to educate the community about hospice and what's available. And educate the medical community too. I think some medical professionals in doing the utmost that they can for a patient, which is admirable and honorable, sometimes forget that hospice is an important option to be considered. It's a hard thing because when you take an oath to treat it's hard to know where to fit hospice into that oath.

Q: What are some of the barriers or reasons why people don't seek hospice care?

Lo: I think many families keep it hush hush because of their own fear. They say they're protecting the patient, but in many cases I think that patient has a need, sometimes a vital need, to talk about it. Death big scary word, but maybe it's okay to cross that barrier and to normalize it as an okay subject. Talking about death opens up fears. Fears that we all might have. And processing them and normalizing them can often a decrease the power that they have over us.

Q: Is hospice right for everyone?

Lo: No, at this point I don't think it's right for those that do seek aggressive care-- to do everything in their power to treat their condition to stay alive. And that's a choice too. I don't think there's any rule against that. All this is about choice, so certainly hospital care is one option. Other kinds of skilled care are available for people such as that. And then there are people that do not want hospice care because maybe it's too personal an issue, and maybe they're so private that they are not ready or willing to accept our kind of help.

Q: How do you know when it's time to give up aggressive treatment and seek comfort care? It must be an incredibly difficult decision. How do people decide?

Lo: That's really tough. Just the decision itself, without all the other peripheral issues can be tough. How hard do I fight, how hard should I fight? And sometimes spiritual beliefs enter into that--how hard does God want me to fight? How hard does my family want me to fight? The decision itself is tough, but when you bring in all the other issues, family dynamics, unfinished business, it really complicates it even more. What we have to do as a Hospice team is help them process it, but be very cautious about how much we include our own agenda. In fact, we shouldn't. We're there to teach, to advise, to counsel, to help process and that's it. And we have to draw the line very firmly I think. A hospice patient that's on the program also has the right to choose to discontinue or revoke the benefit for whatever reason.

Q: What are some of the stresses on caregivers?

Lo: Caregiver stress can be a terrible pressure. A big issue a I think you on one hand have the role of the caregiver in how they perceive that role and how invested they are in that role. And how frustrated they can be in that role. There are certain "shoulds" and "oughts" that always come with that caregiver role. How much should I be doing, how much can I be doing. It's so common for a caregiver to feel helpless. Here you are dealing with a terminal illness, what can you do, what should you do? Nutrition is a huge issue for caregivers. And in many terminal illnesses, there's not a lot you can do with the patient's nutrition. It generally declines, and there's another piece you can't control. And as a caregiver you have to deal with the issue of control, what you can and can't control. We really try to help them process that. And I think as a caregiver you have to put your own needs on hold to a degree, and as you do that you really pay for it emotionally, physically, mentally and sometimes spiritually. So we try to help the caregivers get in touch with some of those needs so that they have some degree of balance. I don't think any body has a perfect balance. But if we can help the caregiver get some of that back, getting respite attending to some of their needs, then maybe they'll survive a little longer, be able to cope.

Q: What kind of advice do you give people?

Lo: One of the most common things that I try to make a caregiver see is to pay attention to your own needs, because in the long run it will affect the patient. If you're burned out, if you're hitting your head on the wall, if we have to scrape you up off the floor, what good is that for the patient? So we really have to tie in the caregiver needs to the patient needs. Sometimes it's hard to do that. As in some cases we've dealt with. I think Jeannett in particular has had a difficult time seeing that. She denies her own needs because she looks at her husband and everything he's going through and it's like how can I consider myself because of what he's going through. So, it's a big educational and emotional piece I think.

Q: If a caregiver burns out there are other options–a nursing home for example. But one option we don't have in Utah, unlike many other states, is a hospice home. A special facility people can stay at that is devoted to end of life care. Do you think nursing homes work for hospice patients?

Lo: I think that though nursing facilities have their place, they're not always conducive to consistent comfort care. I can't fault them, we have some very good facilities in Salt Lake. And they serve a purpose, but I think a hospice house would serve us a lot better in terms of providing more consistent comfort care. I think nursing facilities are so involved with other types of care, rehabilitation, convalescent care, long-term care, that it's very difficult for them to have hospice as a focus. Whereas in a more homelike environment it would be easier for families to be a part of that environment. It's pretty difficult for a family member to spend a lot of time in a skilled nursing facility. They welcome that, but the reality of the setting isn't conducive to that.

Q: What are some of the financial difficulties families fall into surrounding hospice care?

Lo: Most hospice patients are covered by Medicare. But in other cases, the patient and family don't have the coverage through their insurance that makes it workable. In some cases they have partial coverage, but if they're on the program for any length of time, that still is going to leave the family with a financial burden. In some cases, there is no hospice coverage whatsoever. Fortunately our hospice, and I think some of the other hospices, have some funding to assist families with that. In our case, we have an application process that they can go through where the corporation will take care of all of the expense or some of it.

Q: Do long term illnesses often drain the financial resources of the family?

Lo: They often do drain the resources. There is some community support available for different families in terms of medically needy, nutritionally needy and financially needy. There are different programs, like the CHIPPS program, insurance for kids who are eligible. But not everybody can qualify for that. Especially for people in the middle. They're often the ones that get lost. For example, there's the wife that takes family leave from her job. By law, she can do that, and they have to guarantee her job. But in most cases, that does away with that income for that period that she's providing care, and that can really devastate a family financially. So we try to tap into any community resource available including religious funding, sometimes there are family programs but doesn't always cover it because there are limitations and criteria for eligibility.

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