Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, president of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.
In these podcasts, you get to listen in on my conversations with some really remarkable people and hear what health literacy is, why it matters and ways to help improve health understanding.
Today I’m talking with Carol Levine, who directs The Families and Health Care Project at the United Hospital Fund in New York City. Carol has written extensively on family caregiving. In fact, her next book, Living in the Land of Limbo: Fiction and Poetry about Family Caregiving, is to be published in 2014. I can’t wait for that one.
I’ve worked with Carol on a range of family caregiving projects. Now I’m delighted to talk with her about communications during transitions in care. Welcome, Carol.
Carol: Hi, Helen.
Helen: “Transitions in care.” Let’s get really specific. What do you mean by that term?
Carol: This is one of those health jargon terms that most people haven’t heard, but they have experienced it.
Helen: What is it?
Carol: It’s really two things. “Transition” means that it’s a move from one place to another. A typical move is a hospital to a home, but the in-care part is really essential as well.
What it means is that the person you’re caring for is moving from the care of one set of healthcare providers and professionals to another. You may be the other, but there are also other people involved. It’s fairly complicated.
Helen: Let me see if I get this. Somebody is a patient in a hospital and now is going to long-term or short-term rehab or something. That’s the physical move or transition. Then you’re talking about the care. It could even be from one level of care or from one set of providers to the other. Is that correct?
Carol: Yes, that’s right. It can be any number of those things. Typically it involves a different set of providers, such as doctors, nurses, physical therapists and social workers. The role of the family changes as the level of care and expectations change.
Helen: I wanted to ask you about that because I know you use the term “family caregiver a lot.” I’ve learned what that means, but can you explain it to our listeners?
Carol: Yes. Family caregiver is a term that means anyone could be related by marriage, blood or commitment, or just by being a good friend. It doesn’t have to be just those typical legal arrangements. It can be anyone who is responsible for managing or providing the care of a person who has a disability or chronic illness. It’s a very broad term.
In fact, most family caregivers are related in some way, but not all, so we need to think of this as a broad group. My off-the-cuff definition of family caregiver is anyone who shows up when someone is ill and stays. The reality is that it’s not just visiting. It’s being there when you’re needed and hanging on.
Helen: It’s being there when it’s tough too. I can relate to that in all kinds of situations. People don’t always refer to themselves as family caregivers, but indeed they are.
Carol: That’s right. It’s very hard for people who have a longstanding relationship. In my case it was my husband, but it could be a partner or daughter. You think of that as your relationship. That’s fine.
That never changes, but what you do in that relationship does change. When you take on extraordinary responsibilities for that person’s well-being, and health and life in some instances, then you are a family caregiver.
Helen: Thank you for that, Carol. Thank you for sharing about your own experience a little bit too. You talked about this and made some mention about serious disease. Is it always about serious or chronic disease, or could this be something acute that went wrong and that’s going to get much better?
Carol: It could be the acute illness or trauma, such as when someone falls and breaks a leg, is in the hospital, comes home, and needs some help temporarily until they can literally get back on their feet.
That’s important, but our work at The United Hospital Fund has been concerned with people who have longstanding chronic illnesses. They don’t get better. They get a little worse and a little bit better, but it goes on and on.
That chronic illness could be marked by episodes of acute illness that could get you in the hospital and then out again, probably in worse shape than before.
Helen: What’s an example of a typical disease that might fit that definition?
Carol: An example might be heart failure, chronic obstructive pulmonary disease, and even some kinds of diabetes where there are acute episodes and then you go back to what passes as normal.
Helen: I heard somebody else refer to that term as a “new normal.”
Carol: Yes, it is.
Helen: Why is communication extra important at these times?
Carol: At these times of transition when you’re moving from one place to another or from one set of people to another, it’s often rushed. It often comes as a little bit of a surprise, even though you may have tried to find out when the discharge is going to happen and what’s going to happen.
There are so many important things to know about, especially medication changes that may have been instituted in the hospital. That means a different set of medications is going to be required at home or even in the short-term rehab center.
Medication is one thing. Wound care is another thing that people have to do.
Helen: That gets hard. It’s not just changing a Band-Aid here or there.
Carol: No. This is stuff like taking care of post-surgical wounds, an ostomy, which is removal of part of the intestines, or pressure sores. These are things that in my experience I found that regular nurses don’t necessarily want to do. They call for the wound-care nurse.
Helen: The family caregiver is just handed this responsibility like it or not, or ready for it or not.
Carol: Absolutely. We worked with AARP on a study called “Home Alone.” It showed people are doing these things, but they’re afraid they’ll make a mistake and they don’t have any training.
The communication from the healthcare professionals to the family and patient about what needs to be done and who to call when you have a question is really critical.
You as a communication expert know that it’s hard to learn all of that when you’re anxious, rushed, or worrying about whether the ambulette is going to be there or if the homecare nurse is going to come.
Those are things that are on your mind. The nurse meanwhile is saying, “Now don’t forget when you do this to do that.”
Helen: That’s all on top of those underlying health literacy issues such as literacy, age, language, culture and disability. You sure have emotion there when you’re talking about someone who cares the most. You have all of those usual factors that make health information so difficult, and now you’ve added this huge layer of responsibility. Isn’t this one of those gap times in there when there is maybe no one looking over your shoulder for a little bit as you do this?
Carol: Yes, it’s definitely that. I can give you one example from my own experience.
One time when I was being given some information that I knew was critical but it was hard for me to absorb, I felt as though I was watching the person tell me this but I couldn’t hear a word that was being said. It was like watching a TV with no sound. I just couldn’t absorb it.
I think that happens to a lot of people. Healthcare providers tend to get a little frustrated with family members and patients. They say, “I told them this. I showed them how to do it.” It’s the ability to absorb that very complicated, frightening information that is put at risk when you’re in those situations.
Helen: Your story really hits home. Both parties in this conversation have a different agenda. The family caregiver needs to know this life-sustaining information. On the provider side, it’s probably just another routine discharge and they have to get the bed ready for the next person.
Carol: That’s right. I understand the pressure and the need to accomplish this, and the fact that this isn’t such a big deal for the trained healthcare provider. It’s just hard for them to understand why it’s such a big deal for the person standing in front of them.
I think if there was better understanding on both sides, the communication would go more smoothly because they wouldn’t be talking almost at cross purposes. One is looking at her watch and the other one is saying, “Oh my god! What is this all about? I don’t know how to do this. I can’t.”
Helen: I feel that. Probably many of our listeners, myself included, have been in situations like that. Don’t leave us in this bad place, please. For all of the wonderful work you’re doing at family caregiving, I hope that there are some strategies and things that both sides of the conversation can do. Are there?
Helen: Clue us in, Carol. You can start with the provider side. Probably more of our listeners are on the healthcare end, but we’re all also loved ones, family members and caregivers at some point in our lives.
Carol: The first thing I would say is that providers and family members need to start early in this process. Don’t leave it until the last minute because it does take time and repetition. You don’t learn it the first time. You need to be able to practice and see somebody do it a couple of times.
Helen: Are you talking about a task such as wound care?
Carol: It could be a task, wound care or medications. It takes time to go over things like, “Is this drug the same one my mother was on? The name isn’t the same.” The response is, “Yes, it’s the one the hospital uses, but the pharmacy will give you something else.”
Helen: Start early, practice it and repeat it. Get some measure of confidence in there.
Carol: Ask questions. When you’re thinking at home, “What was that all about?” write that down and ask the next time you’re at the facility or wherever the person is. There isn’t a lot of time in the hospital, but there’s enough time to get this done.
It’s important for family members to sometimes say, “No, I can’t do this,” and, “No, I will not be there every day to do this every two hours, so we need to figure out another way. Is there a home care service that my parent would be eligible for?”
Helen: You raised two points. I want to make sure that the provider or communicator end is on board with that. One was asking questions. Do you find that the professional community is receptive to those questions?
Carol: Yes, if the caregiver or patient asks questions in a way that is not confrontational or that makes the provider feel inadequate. They can say, “I know you’re trying to help me, but I’m not getting all of this. Could you repeat that?” There’s one technique which I’m sure you’ve talked about. It’s called teachback.
Helen: We talk about that a lot. How interesting that you’re mentioning it too.
Carol: When we did a learning collaborative with healthcare providers called Transitions in Care–Quality Improvement Collaborative, or TC-QuIC, the providers who used teachback and needed practice themselves in doing it found it worked.
Helen: Teachback is just confirming understanding. “I want to make sure I explained this clearly. How will you do it?”
Carol: It takes the onus off the patient or the family and puts it on the provider to say, “How did I communicate this?”
Helen: I’ll bet that really addresses taking time, repetition and practice. We talked about asking questions and being receptive to getting questions.
The other part you were talking about was saying no. What does the professional end of that conversation do when a family member says, “No, I won’t be there for that”?
Carol: It depends. Professionals will say, “Can you tell me what the problem is? Is it that you feel uncomfortable doing it, or that you don’t live with your mother, you’re not right there, you have a job, or you’re here from California and not going to be there in the house every day?”
Helen: It’s a little bit of probing and context. You can do that in ways that aren’t adversarial and don’t make anyone feel awful. These are great suggestions.
Carol: Once you get the barrier identified, then maybe you can figure out a way to get around it. It is, however, one way that a family caregiver gets the provider’s attention.
Helen: Is that a good thing?
Carol: In some cases it’s a necessary thing. It isn’t ideal, but if you’re really concerned and you can’t do this for many valid reasons, then you have to start saying, “No, this isn’t going to work.”
One of my colleagues who is a nurse says, “Just say the words, ‘This won’t be a safe and adequate discharge,’” which is the Medicare mantra for a hospital. They have to be able to verify that this discharge was safe and adequate.
If you say, “This isn’t a safe and adequate discharge,” then you get their attention in a different way. There are a number of techniques to do that. They are only to be used as a last resort. That’s not my preferred way of going about things.
Helen: Your preferred ways are the other ones you were talking about. Are there other ones you just absolutely want our listeners to know right now? I know we can’t get to them all, but I want to see if there are any other top strategies they need to know about.
Carol: On our Next Step in Care website, which you have helped us with, there are discharge checklists that can help to at least organize the questions that you need to have answered.
That is a help in the sense that if you have the different categories and things you want to know about organized for you, it’s easier to focus on the questions rather than trying to remember everything. Then you get home and think, “I forgot to ask about that.”
Helen: Those can also be used from both ends of the conversation as well. Maybe they’re written more or less for the family caregivers, but if a professional looks at that list, he or she will also know what issues to address.
Carol: Yes. They can say, “I forgot to mention that the social work department will take care of the durable medical equipment,” or whatever it is.
It’s just a way for you to make sure that the transition is complete and that you have all of the information written down in a place that you can take with you. It’s just a device that helps make things work better.
Helen: For all of the communication challenges that face us in that urgency of those transitions in care, any tools we can get are great.
You mentioned the Next Step in Care website. I was privileged to work with you on it. Sometimes I still do work with you on some of the content. I think it’s terrific. Could you please give our listeners the URL for that?
Carol: It’s www.NextStepInCare.org.
Helen: There are so many resources there. I encourage listeners to go and keep learning about what they can be doing and how they can help both sides during the transitions in care.
There is another paper I want to draw a little bit of attention to that I found recently. You are one of the two authors of it. It’s an action agenda called “Transitions in Care 2.0.”
It comes up with all kinds of recommendations and strategies for what people, professionals and organizations can be doing at this time. Can people find this paper on that website?
Carol: That action agenda is actually on the United Hospital Fund website at www.UHFNYC.org. That is really the combination of all the research and experience that has gone on over nearly two decades about transitions in care. It’s not just our experience, but others around the country. It really is a call to action to make transitions better for everyone.
Helen: It’s wonderful. In this time of our changing healthcare system, this information is more valuable than ever.
Carol, I want to thank you so much for doing all that you do to help patients, providers, family caregivers, and all of us navigate our way through this healthcare system. Thank you, Carol.
Carol: Thank you, Helen.
Helen: I learned so much from Carol Levine, and I hope that you did too. But health literacy isn’t always easy. For help clearly communicating your health message, please visit my health literacy consulting website at www.HealthLiteracy.com. While you are there, sign up for the free enewsletter, What’s New in Health Literacy Consulting.
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Did you like this podcast? Even more, did you learn something new? I sure hope so. If so tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.