A Conversation with Lo Pendleton, Social Worker

Continued...

Q: I think a lot of people don't know how to talk to kids about death. How can people approach their children and help them understand?

Lo: Let me approach that generally first. I think a it's important to give children a choice. Some kids can take a lot of information, others won't do so much. But the other side of the coin is that sometimes families tend to want to protect their children. I think either extreme can be damaging. If you leave them out of the loop, so to speak, that little kid will be sitting in the corner over there wondering "hey what is so scary, what is so huge about this that I'm not involved?" So I think that kind of magnifies their fears and feelings, whereas if you make them a part of it as much as they can tolerate, then it makes it less makes it more normal, and easier to deal with.

When you're talking to a child, I think it's very, very important to be very clear, use very real terms: death, dying, illness, that sort of thing. Sometimes a families try to couch it in more gentle terms. I'll give a kind of a glaring example of a mistake that most people don't make, but it just for purposes of illustration: "Daddy is going to go to sleep one day and go to heaven." Well, take it from there: "Sleep, oh, okay, well I'm not gonna ever go to sleep again then because I'll probably die too." That's one example of why it's so important to be very concrete, very clear and use real terms for children.

Q: What's the kind of work your trying to do with Kyle?

Lo: Kyle is a very bright young man who I think is a little ahead of his age. So he can absorb a little more than a lot of kids his age might not be able to. But, even so, Kyle is likely to view death in a very concrete way. He's not going to abstract like you and I can, which helps us process it in a different way. So, what we do with Kyle a is on a more basic level. Art work can be a very good tool with kids, because they can tell a story on through art and through pictures, through play that might not a get at the heart of how they're processing and how they feel about it.

Some time ago, Kyle and I sat down. He's a great kid, fun to be with. He drew a picture of his mother in bed and everything, all the objects surrounding her and he told a story about how he was going to save her. He was going to a deal with the bad part, or the bad people that were causing this and a it went to the very heart of how kids often deal with this. Some kids wonder a what they did wrong to cause the death or an illness. The magical thinking that they get involved with that says it's important that I do something to change this, and so that information I think really helped his mother a realize where he was with all of everything that was going on. And Nancy, our chaplain continues to work with him on a lot of the spiritual issues that are surrounding that and how emotion and anger definitely can be all caught up in that.

Q: It seems like there would be a lot of anger, an awful lot of anger, an awful lot of fear.

Lo: Anger is an interesting emotion and issue, and sometimes patients and families don't know where to place that because often times, anger being a negative emotion, anger being not a very spiritual emotion, is maybe not an emotion you're supposed to have, especially if we're angry at God. That is something I deal with quite a bit and I'm sure Nancy, our chaplain does as well. I think we have to help normalize that and help the patient or family member acknowledge it, realize it's normal and what do we do about it, how do we move beyond that, it's a step in the process. Sometimes we deal with anger towards the patient. That's another tough one too. Here, the patient is lying in bed, dying of a terminal illness, how can I be angry at that patient. But it often happens because I think the concept is "you're leaving me, I need you now, how can you leave me at a time like this where a maybe I've got to raise the kids alone, maybe I've got to worry about the financial part a maybe the spiritual part too, how can I do that alone?" And so a people often feel abandoned and as a result angry. Because of that abandonment.

Q: Talk about spirituality in your job.

Lo: I think spirituality from our point of view has to be a very general term. Your spirituality might exist up in the mountains with nature, and Bob down the street might be a devout Catholic and he is steeped in tradition and going to mass every day, that might be his focus. And there is everything in between. So when we approach a patient and family about spirituality, we have to leave our own at the door. We have to validate whatever belief it is, even if it's a total non-belief or if it's a belief in something nebulous like a some higher power that's not well defined or nature, whatever it is. I think we also have to allow for the possibility of a person, patient or family member saying I have no spirituality whatsoever, and it has to be okay. So how we help them has to be I think in a very generic approach, a very accepting approach. It certainly wouldn't be our goal to change that or modify it in any way but just help them fit their belief to what's going on in their situation.

Q: How can friends and family offer their support?

Lo: Outsiders, and when I say outsiders, I mean those outside the immediate family circle often have a very tough position, where they're looking in, many of them feeling helpless, awkward. I think that they have to realize that there will be boundaries, that they need to be careful with. They can't be become part of that inner circle necessarily. But I think number one, honor the boundaries, but be willing to step up and help. A lot of people might say "call me, call me." Family members and patients aren't likely to call. So I think, find out what is helpful and do it, without being intrusive. The other thing is realizing that there's nothing you can do to change it. And so, this tool on either side of your head...your ears are valuable tools. Open them up, listen and be very sparse with advice. In fact, I wouldn't go there. Because sometimes advice, though well-meaning, can be damaging or in the least, not helpful at all. So, being there is big.

Q: Talk to me a little bit about Karen's loss of role of mother for her how the neighborhood is helping out.

Lo: I think Karen has struggled with the loss of role of motherhood or at least the ever changing role, that's been a real struggle for her and her kids. I think Kyle, who understands more of what's going on than his younger brother does or ever will, is struggling with "you have been such a wonderful mother, and now you're abandoning me." I think he has dealt with some anger that and Karen has to deal with the brunt of that anger and also the feelings that are already present for her. The feelings of maybe inadequacy, the feelings of loss of role, the feelings of her impending death. And that's that's a tough, tough thing. And I'm sure her other role as wife certainly enters in as well.

Q: What's the neighborhood doing?

Lo: The neighborhood and her church have rallied around to a large degree. But even those people after a certain amount of time can burn out. So I think they have dealt with that issue as well.

Q: Can you briefly explain the differences between a living will, advanced directives and the power of attorney.

Lo: Advanced directives is a general term that encompasses the living will, the medical power of attorney and the medical treatment plan. I think it's generally the same across the country with some differences, but in Utah, we have the living will, which is a signed statement signed by the patient, witnessed by two people who are not relatives, and that have nothing to do with their medical care of financial situation. Basically a statement that a says I do not want to have heroic measures to keep me alive beyond a reasonable point. Medical power of attorney is a signed statement choosing a medical decision maker in the event that the patient becomes incapable of making their own choice. A medical treatment plan is a plan done in cooperation with the attending physician, that spells out what my plan of treatment is should I become terminally ill, and it can be very, very specific. Often times a family will use it when the patient has already become incapable of making decisions and they'll get with the doctor and work out a plan. But sometimes the patient is involved, when they are capable.

Q: When shall we start thinking about those things?

Lo: I think that you can start thinking about that at any point in time. You don't have to wait until you have a serious medical condition. I know a lot of people are reluctant to do so because they think, "maybe I'm signing a death warrant or something like that or maybe I'm making some kind of admission that I have a terminal condition." But I think it makes sense, if you're choosing a to fill out advance directives to do it early on, before you're faced with some kind of a situation medically that might impair your ability, emotionally, mentally or otherwise, to make that decision. You and I, sitting here right now, should maybe consider that. And basically is what you're doing is planning ahead. Not necessarily admitting that maybe I'll die tomorrow.

Q: With each family, what is your real connection, maybe real hope for them?

Lo: For the Rydalches, my hope is that Rick would process more of the issues that are important to him, but my feeling is that the the illness itself, the tumor itself will get in the way of that. Furthermore, I hope the children will be able to a become a little more involved and process it a little more than they have.

Q: My hope for the Cook family is that they can deal with this with a sense of peace, a that they can communicate what they need to, that Karen can die with a sense that things will carry on, that the children will be okay, that Ralph will be able to function, a that she can have a spiritual peace, that they can continue to maintain at home or if not, that they can all cope with it if they need to make a change...that there won't be too many traumatic events or feelings.

Lo: As far as the Jones family, I hope that they won't have to go through any a major changes, that they be able to continue on and accomplish the things that they're trying to accomplish as husband and wife and family. I hope that Ben will be able to deal with all the different roller coaster of emotions that often happen.

And, that grieving won't be too awfully traumatic for any of the families.

Q: It seems like you get awfully close to the families.

Lo: Yeah, yeah definitely.

Q: How do you deal with the constant loss?

Lo: I think I deal with the constant loss by maintaining my own personal balance, a professional verses personal life. But also it's a matter of perspective. When I walk into a home. They're opening the door into a very personal and intimate time and place, and I I think, what an honor, and to be a part of that. Wow. It doesn't get any more personal than that. I think that helps me draw certain boundaries.

I think that we all bond to a certain degree because of the nature of what we are doing. And it's not that we don't sometimes grieve. In fact we have a structure set up to where we can have kind of a debriefing grieving session with each other, kind of review the people that have died and a process that as a team. I feel that we have a very supportive, very close team. We can go to each other if we're having a rough day or, for example if one of the nurses a experienced a particularly traumatic loss, they might come to me, unload and process and move on.

Q: Any advice for us mere mortals going into this process?

Lo: Yes, be gentle with yourself. And find out what works for you as an individual. What works for one person might be totally different from what works for you

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