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Five Tips for Family Caregivers of Advanced Cancer Patients

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Five Tips for Family Caregivers of Advanced Cancer Patients

Mar 30, 2016

When you have a family member with advanced cancer, the final days can be very difficult, especially if you are also their caregiver. However, they can also be a special experience. Clinical psychologist Lee Ellington has done a lot of research on this topic and has identified five things that can make those final days more rewarding for your loved one and yourself.

Episode Transcript

Interviewer: Five tips for family caregivers of advanced cancer patients. That's next on The Scope.

Announcer: Medical news and research from University Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Interviewer: You find yourself in a situation where you have to provide care for a family member who has advanced cancer. It can be a very, very difficult time. And today we've got Dr. Lee Ellington. She's a clinical psychologist. She has five tips to help maybe make that process better not only for yourself but, more importantly, for the cancer patient as well. What is your first piece of advice for somebody that has found themselves in the situation?

Dr. Ellington: Number one is to communicate openly with the patient or other family members about the remaining days. It may be uncomfortable, but it's an important conversation to have.

Interviewer: And why is that conversation important? What does that do? What does that accomplish?

Dr. Ellington: It helps people prioritize what's important in their life, things that may have gone unsaid that they might have regrets about later. It helps open up some understanding and I think, in general, just talking about how we want to live in our final days needs to be an open conversation.

Interviewer: How about number two?

Dr. Ellington: If you have a patient with advanced cancer, then I think it would be important to learn about hospice before you need it. So explore hospice and what hospice offers and how not only will it help the patient that they're caring for but they may have many resources for the family. So hospice is a team approach. There's a chaplain, a social worker, a physician, nurse, hospice aids and other resources, and the unit of care is for the family.

Interviewer: So it's not so much necessarily always for the patient, but it's also for those that are caring for the patient in the family?

Dr. Ellington: They will encourage about the caregiver to take care of themselves, but sometimes the caregiver will say, "No, no, no. I can't do that now." But to be at their best, to really take care of the patient and themselves, they need to do both.

Interviewer: All right. So it's a good idea to have an idea what hospice can do, what kind of resources will offer you. What's number three?

Dr. Ellington: Consider yourself a hospice team member. So hospice is a team care approach and the family caregiver and the patient are part of that team. Caregivers have valuable information about the family, about the home life. They know a lot about the cancer and the disease and values and preferences and they should empower themselves to voice that and see themselves as a team member.

The fourth thing is to take care of themselves, self-care. So maintain their health the best that they can. Be sure they get the rest that they need and the resources to provide rested if that's necessary. So kind of pace themselves.

Interviewer: So don't abandon all the other things in your life. You still need to keep maybe exercise routines or give yourself some breaks away from caring for that patient. Again, I would imagine a lot of people are like, "No, I can't do that. That's selfish of me."

Dr. Ellington: Absolutely. That's the most common statement, I think. The other would be to seek support, whether from the hospice team, from families, from friends. People don't know what to do. They want to provide support to you, to both the patient and to the family and to take people up on that and ask for it, meals, a friend to talk to, a break. So seeking that support.

Interviewer: Yeah. And so often in that situation, you'll find people will say, "You know, if there's anything I can do," and then how often does that conversation just end right there? You're recommending that that family member should say, "You know what? It would really help if you could cook a potluck dinner for us tomorrow night or whatever."

Dr. Ellington: Absolutely.

Interviewer: Is there a big bottom-line takeaway when it comes to you're the caregiver, how can you care for yourself for the benefit of not only yourself and your loved one as well?

Dr. Ellington: Death does not just one person's experience. It's everyone's experience. There's loss, there are goodbyes. And so I think the takeaway is that to come together and decide how the family or the support ties want this to occur, want it to happen and be clear about that. So that means maybe taking a break so that they can be present for important conversations or can be present to provide the care they need. Or it may be taking a break to reflect on, "What just happened here?"

Interviewer: Do you find that that uncertainty of the person that is giving care not exactly knowing what the person that they're caring for wants can cause a lot of undue stress and that's why these conversations are important?

Dr. Ellington: Yes. People are afraid to talk about it and, certainly, the patient drives the course of the conversation. If they're not comfortable about talking about the final days and you've gently tried to make that occur, then you need to talk about with someone the final days and what you want and how you can make that happen for yourself and for the patient, but definitely, these conversations are difficult in our current culture.

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