Helen Osborne: 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 amazing people.
Today, I’m talking with Kathy Kastner, who is founder and curator of the only patient-consumer perspective website and ebook for end-of-life education, called www.BestEndings.com and Death Kills …and other things I’ve learned on the internet.
Kathy uses many formats to share her expertise and experience. These include speaking at numerous healthcare conferences, blogging on well-regarded health websites, broadcasting on hospital-based television networks and participating in invitation-only think tanks. Justifiably, Kathy Kastner has received numerous awards for her advocacy and work.
Kathy Kastner: Hello. Thanks, Helen.
Helen Osborne: You and I met many years ago at a health literacy conference and we’ve stayed in touch by email ever since. I am very intrigued with your recent work on end-of-life communication.
When you talk about the term “end of life,” what exactly are you talking about?
Kathy Kastner: First of all, end of life is a nebulous term. Who knows when end of life is going to be? However, thinking about and talking about end of life can be prompted, and is often prompted, by something that happens in life, whether it’s a diagnosis, a change in health status or the media.
There is a lot of talk right now about end of life, what with medical assistance in dying as an example, which is not what I’m going to talk about, but it just depends on where someone is at in their own life journey.
Helen Osborne: Can it be a frame of mind too?
Kathy Kastner: That’s an interesting question. A frame of mind is certainly how I’ve come to look at it, but the frame of mind is not death. It is living one’s best right up until the end.
Helen Osborne: Living one’s best until the end, that’s interesting.
You don’t have a background in this as far as I know. When you and I first met, we were talking about other things. How did you get involved in this very special focus on end of life?
Kathy Kastner: “Very special” is a lovely way of putting it, considering it’s an emotional and fraught topic as a gap identifier in patient-facing education.
Helen Osborne: That’s what you are, a gap identifier?
Kathy Kastner: That’s how I’ve come to identify myself, especially in this particular area. Although, as you know, in health literacy, there are all kinds of gaps.
With end of life, I stumbled onto a tweet chat. It was end-of-life healthcare professionals whose mission is for us patients to have a dignified and free-of-suffering end of life.
I realized in lurking and listening on these 140-character messages how little I knew in order to make meaningful decisions, like by way of advance directives. In fact, I think advance directive and advanced-care planning are not commonly known words to the public. We still think of living wills.
Helen Osborne: You started on a tweet chat and you are a gap identifier, so it sounds like maybe your own interest was raised in this one as you’re coming up with terms and concepts that the general public doesn’t know.
Kathy Kastner: Absolutely. The first term that took me by surprise was CPR, though not the term itself. Everybody knows CPR. It stands for Cardiopulmonary Resuscitation.
I think generally there’s an understanding it means starting the heart again one way or another, whether it’s St. John’s Ambulance courses or defibrillators in transit. Really, the only way that I had seen CPR was on TV.
Helen Osborne: Kathy, you’re talking about terms like CPR, end-of-life communication and advance directives. You as a layperson, and just hearing all of this, are thinking that these are terms people don’t already know.
Kathy Kastner: Absolutely, amongst others. If they are known, like CPR, it’s the larger understanding of what CPR does to the body and in a way, more importantly, especially for elders, what the recovery or non-recovery is like. Health professionals will often frame things in terms of success rates: failure, invasive or noninvasive.
Helen Osborne: Do you mean if we’re talking about all of a sudden somebody is facing this life-and-death moment and what we as health professionals do or do not do at that moment? You’re saying that the average person not in the healthcare world may not really understand the implications of this or the success. Is that right?
Kathy Kastner: Certainly, the implications and success. Much of health literacy means different things to different people.
Helen Osborne: You, as this lay person, this gap identifier, this person who’s very sensitive to health literacy issues, are seeing there’s a problem there. What have you done and what can you share with us to make things better?
Your talking about what the problems are makes a lot of sense. But what can we as professional communicators do to make things better and what can we as people do to help with our own understanding?
Let’s take it from the top with the health professionals, because our listeners could be any range of people somehow interested in communicating health information more clearly.
Kathy Kastner: For healthcare professionals, I would start by saying to put aside your biases. We each come with hopes and a moral framework, but they should not be applied to patients.
Let’s use feedings tubes as an example. In my encounters with healthcare professionals, the notion of withholding or not starting a feeding tube as a patient is declining is akin to ending life.
For a patient and their family, a feeding tube may be taking away from the very thing that we, and I’m going to use a larger we, like to do, which is to chew food, swallow and have social aspects of it.
I’ve found that healthcare professionals often forget that we patients are strangers in a strange land and we don’t know the rhythms of your work and the things that you face. All we can do is hope for a good outcome.
In end of life, hope even takes on different meanings. Even that single-syllable word, with five or eight definitions, can mean radically different things, especially at the end of life.
Helen Osborne: I once did an article years ago, and I’ll have the link to this on our Health Literacy Out Loud web page, that was talking about sad and bad news. I interviewed a colleague who was an oncologist and we talked about that role of the word hope.
He deals with people who have a dire diagnosis. What he talked about is that what people hope for can change over time. It may not be as far distant as “I want to see my preschooler graduate high school,” but it can be “I hope to see some wonderful thing happen tomorrow or later today.”
Is that how you understand hope and that the meaning can change?
Kathy Kastner: Most definitely. There are folks that I have been speaking to who have inspired me in the hope area. For instance, a woman who married for the third time, as her first two husbands died, fell in love a third time only to find her new husband had esophageal cancer.
Helen Osborne: Oh, dear.
Kathy Kastner: They found daily hopes, like “I hope I can hug my wife” and “I hope I can see tomorrow’s flowers bloom.” They made a daily ritual.
They had two marble containers and each day they put one marble into the empty container. They celebrated month by month and found joy in the three months that they had together, so their life was radically reframed. One of his hopes was that he hoped to preach on Mother’s Day and he did.
Helen Osborne: That’s wonderful.
Kathy, I’m looking at the notes I took about your tips for what professionals can be doing, professional communicators of any variety.
You talked about realizing that the folks we’re communicating with are strangers in a strange land. That’s really understanding the other person’s perspective. Is that the same concept that would show up in all the other ways we communicate health information?
Kathy Kastner: Yes. In the case of end-of-life decisions, there’s a wonderful doctor, Rebecca Sudore at UC San Francisco, who writes about next Tuesday’s meal and end-of-life decisions. The context is “What are you going to have for dinner next Tuesday?” and the answer is likely “It depends.”
To actually expect us mere mortals to be able to make decisions about end-of-life medical interventions when we have no idea what may happen.
Helen Osborne: I see. I understand where that Tuesday concept comes out. It’s not that we’re planning all that out. We don’t have a week’s worth of menus. It’s just like “I don’t know. I’ll figure it out then.” At least that’s how I approach dinner.
Kathy Kastner: Exactly.
Helen Osborne: I’ll figure it out then. Appreciate that professionals have one sense of reference and a whole body of experience, and the person or the family going through this has a whole different orientation.
You also talked about appreciating the rhythms of it. Is that what’s going on too, the fact that professionals and communicators have an understanding of that bigger picture of the rhythms that are likely to happen?
Kathy Kastner: Not all healthcare professionals. In fact, I found that, unless a healthcare professional is working in the end-of-life space, there is sometimes as much confusion about a couple of words in particular.
One is palliative care, which is the other word that began my journey into what really happens as life ends. It’s not right at the end, but in the journey toward end of life.
My impression of palliative care was that it was a euphemism for “You’re dying. There’s nothing more that can be done for you.”
Many healthcare professionals I have found, and I’m hoping that’s going to change, have that same impression. It gives them the chills. It makes them shudder, whereas in fact the palliative approach is the most person-centered approach of any specialty.
Helen Osborne: That’s really interesting, Kathy. You’re in Canada and I’m in the U.S. and I thought that term “palliative care” actually had to do with insurance reimbursement and payment systems.
I know a lot of people, myself included, often comingle that term with hospice, which has nuances to people doing that work, but to families it can be that “eek” phenomenon.
Kathy Kastner: Absolutely. They are two different things. With the palliative approach, the trend is to apply a palliative consult at time of diagnosis. Even if you have MS or ALS, and I’m not even going to talk about cancer because that should be a no-brainer, your entire person should be taken care of.
Helen Osborne: Interesting. It sounds like, for whatever phase we’re communicating about, and we all have our own language, words and terms, keep in mind the audience, what you do and do not know and what the other person does and does not know. It sounds like that’s just like health literacy in action.
Kathy Kastner: Absolutely.
Helen Osborne: I want you to put on your other hat as a regular person, just like all the rest of us. We all have dealt with situations of end of life, are dealing with them or will deal with them. What do you recommend from all your great learning and participation in this? What can we be doing to make this communication better?
Kathy Kastner: There are two things. Take advantage of not being at the end of life to learn more about the two or three things that seem to regularly come up. Feeding tubes are definitely one of them. Learn about feeding tubes.
Pacemakers, which are wonderful lifesaving devices, at the end of life can give nasty shocks when you want to go. Repeated infections, whether chest infections or bladder infections, are not uncommon as life winds down, especially in the elderly.
Learn whether repeated courses of antibiotics may weaken systems more and whether comfort is smarter than going for repeated courses of antibiotics.
Again, we’re talking about elders here because that’s really my demographic, and adult children caring for aging parents.
Think about an elder who says, “I don’t want anything done. I’ve had a good life and I just want to go.” If that elder collapses in front of you, what are you going to do? Assuming it’s a massive heart attack or a stroke, are you going to be able to follow their wishes?
Helen Osborne: You’re bringing up all kinds of issues that are so very real, certainly in my life and in my family. Just yesterday in my neighborhood, I saw the fire truck and the ambulance at someone’s house. This woman is in her late 90s. The family member was escorting the fire people in and then they probably took the mom away.
In my mind, I was thinking, “That family is heading down a cascade of interventions that will keep happening.” Was the family aware of that at that moment?
I’m hearing this on a very personal level in there too. As a person, as a communicator, we all want to make it better.
Kathy Kastner: Absolutely.
Helen Osborne: Kathy, I thank you so much for bringing all your wisdom, perspective and energy into making end-of-life communications better. For those of us who want to learn more, I know you have some resources out there. Maybe you can share a few with us.
Kathy Kastner: On my website, www.BestEndings.com, I have brought together a combination of evidence-based research, narratives and personal takes. Also, I went on a home visit with a palliative-care doctor so that I have personal experience on what that wonderful specialty does.
There are two people I suggest anyone look into more. One is Rebecca Sudore and the other is Diane Meier from the Center to Advance Palliative Care, who says, “Health literacy is not a patient’s issue. It’s a healthcare professional issue.”
Helen Osborne: We will have that link also on your Health Literacy Out Loud web page. One last resource is one I know you put together in a paper version and not just a web version. What’s your book about?
Kathy Kastner: My book has a cheeky title, Death Kills. I cull from comments on blogs and insights from healthcare professionals who have witnessed and gone through painful deaths with their patients and less painful deaths.
Helen Osborne: You bring in the stories too. You’ve got the stories and the resources. We’ll have these links plus more.
Kathy, thank you for all you do and are doing and for sharing it with listeners on Health Literacy Out Loud.
Kathy Kastner: Thank you, Helen.
Helen Osborne: As we just heard from Kathy Kastner, it is important to consider how we communicate at all phases of life and toward the end of life. But communicating like this is not always easy.
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Until next time, I’m Helen Osborne.