Patient advocacy is more important now than ever [PODCAST]

Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes

“In the best of times (and these are certainly not), all patients need advocates all the time; now more than ever, vulnerable patients need them more but don’t have access to them. Vulnerable populations have more at stake when visitors are limited or prohibited. What’s more, vulnerability may be exacerbated due to youth, advanced age, disability, cognitive impairment, illness acuity, language – or, as we have come to realize of late – implicit bias.

Advocacy can take many forms. For the patient who cannot report accurately on their medical history and symptoms, the furnishing of information to health care professionals can speed accurate diagnosis and minimize test and imaging fishing expeditions. Personal advocates, when present, may provide comfort and be a conduit to nursing staff when pain is present, and other physical needs are unmet.

Equally important, vigilant personal advocates can be instrumental in offsetting nursing responsibilities by feeding and mobilizing patients, preventing falls, and even initiating rapid response codes. Finally, for patients limited by expressive disorders or constraints, the personal advocate can inform staff about individual preferences, priorities, and values, so that goals of care are aligned with patient wishes.”

Bonnie Friedman is the author of Hospital Warrior: How to Get the Best Care for Your Loved One.

She shares her story and discusses the KevinMD article that she co-wrote, “Making time for patient advocacy is more important now than ever.”

This episode is sponsored by The Nuance Dragon Ambient eXperience (DAX). The Nuance DAX solution makes it possible to forget the tech-toggling and reduces documentation burdens no matter how or where care is being provided.

Did you enjoy today’s episode?

Please click here to leave a review for The Podcast by KevinMD. Subscribe on your favorite podcast app to get notified when a new episode comes out!

Do you know someone who might enjoy this episode? Share this episode to anyone who wants to hear health care stories filled with information, insight, and inspiration.

Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Bonnie Friedman. She is the author of Hospital Warrior: How to Get the Best Care for Your Loved One, and she is the co-author of the KevinMD article “Making time for patient advocacy is more important now than ever.” Bonnie, welcome to the show.

Bonnie Friedman: Thank you so much for having me, Kevin. I’m a regular reader and delighted to be a guest.

Kevin Pho: So we’ll get into your article and book in a little bit, but first off, can you share your story and your journey to where you are today?

Bonnie Friedman: Sure. I spent much of my professional career in communications. It started with work right out of college at the National Institutes of Health, so I had some exposure to medical issues, medical research, and the terminology, which I think is an important part of what helped me become an advocate.

During all of the years of my career, my husband had a series of some very life-threatening illnesses over a 24-year span. He had 14 different hospitalizations, and quite a few of those were life-threatening illnesses. So while I was trying to continue raising our children, take care of the dog, and keep my career going, I was also learning to take care of my husband in the hospital and in the months that would follow in his recovery. I just kept learning more and more about the importance of advocacy in a complicated medical situation like a hospital.

By the time he recovered from his last illness, and I want to emphasize he’s doing really well now, he thrives, but by the time he recovered from that illness, I was just brimming, literally, with a need to share how much I had learned. It came together for me after this last period, because he had been so sick for so long, and I felt I had really reached my stride as an advocate who truly could make a difference. At that point, I had a consulting business of my own. I had left the government, and the business had kind of flatlined because I was away from it for so long. Rather than restart the business, I decided to write the book Hospital Warrior so that I could start to share how much I had learned and hope it would begin to help others.

Kevin Pho: So let’s get into the KevinMD article that you co-wrote, “Making time for patient advocacy is more important now than ever.” Now, for those who haven’t read your article, can you walk my audience through it and share the story of why you decided to write it?

Bonnie Friedman: Sure. My co-author and collaborator, Sara Merwin, and I have been talking off and on over a period of time, because she comes to patient advocacy from a different perspective, but we share very similar views, and we agree so much on how important advocacy is for patients, particularly ones who aren’t in a good position to speak for themselves. We agreed that in this period of the pandemic, when things in a hospital are stretched to their absolute limit, when doctors and nurses and other medical practitioners are stressed and not able to always do everything they would like to do for their patients, in the midst of all that, advocacy is more important than ever.

And yet we have this horrible situation where, because of the pandemic, oftentimes families or very close family friends who would serve as advocates aren’t able to be in the hospital. So at a time when advocacy is most needed, it’s quite frequently least available.

So in the article, we talk about some ways to try to bridge this gap, recognizing that none of them are perfect, but we advocate for everyone doing the best they can do. That includes doctors and nurses trying to take extra time, and we know that’s asking a lot in this circumstance: taking the little bit of extra time to make sure they’re keeping in touch with the patient’s family, and if they can’t do it, then making sure that a nurse or a social worker or somebody else in the hospital is keeping that connection. Making sure that the patient’s background is well understood, their preferences, their medical history, all of the things that go into knowing a patient well and being able to provide good care, can get lost so easily. I know from my experience that those pieces that I fill in and those gaps that I close have often been lifesaving, quite literally, in my husband’s care over the years. So we’re putting out the best case possible for doctors and nurses to try to make time, or to find others in the hospital to make some time, to do that.

By the same token, families can play a part in trying to close this gap as well. For example, the primary care physician may well not know that the patient’s in the hospital. Call the PCP. Make sure you’re able to relay to that doctor the name and contact information for an attending physician in the hospital, and make sure you ask the PCP to relay the things that you think are critical in knowing the patient’s background, in a way that relates to the circumstance that’s going on in the moment. And be able to talk with the doctors when you can. That’s hard. It’s very hard for the family to get in touch with the doctor, and it may be equally hard for the doctor to get in touch with the family. Use technology as much as you can to, again, try to bridge that gap.

And I can’t overestimate the importance of keeping the nurses in the loop. All too often, in the midst of everything, the nurse, who can be so critical as a patient advocate directly, can sometimes be a little bit out of the loop. So keep them in the loop as well, both from the doctor’s end and the family’s end as well.

Kevin Pho: Well, those are some wonderful pieces of advice. And I know, speaking as a physician, we are obviously rushed. So much is on our plate, and we don’t spend as much time with patients and their families as we would like to. What are some techniques that you can share, from a patient and family standpoint, in order to speak up if they don’t feel like they’re receiving the care that they should?

Bonnie Friedman: I think the most important thing is for the family advocate to recognize that their role is as important as the doctors’ and the nurses’; it’s just different. So believing in yourself as an advocate who has an important role to play and something to contribute to the patient care conversation is the best starting point. Now, you have to mix that with a little bit of diplomacy and a whole bunch of chutzpah, that wonderful Yiddish word that encompasses gumption and belief in yourself. You have to have a little bit of that too. And you have to be able to speak to the doctors as a well-informed professional in your own way. You may not be a medical professional, but you’re being professional in your presentation.

So I like to tell people: Believe in yourself. Speak up in a respectful, responsible way. Don’t let yourself get carried away with too much emotion, because the doctors are busy. They want to be responsive, but they don’t always have a lot of time. Make the best use of that limited time. So have your questions ready. Don’t start scratching your head and thinking in the moment. Be ready. Have a list. Keep a notebook. Talk in an informed way. Take notes, and make sure you know what you’re talking about, so that you can speak responsibly and respectfully. When you do that, you’ll get that kind of response in return.

Kevin Pho: We’re talking to Bonnie Friedman. She is the co-author of “Making time for patient advocacy is more important now than ever.” That’s a KevinMD article, and she is the author of Hospital Warrior: How to Get the Best Care for Your Loved One. Bonnie, what kind of advice can you give to clinicians who may be listening to this podcast, from a patient advocate standpoint?

Bonnie Friedman: I think clinicians have to recognize the reverse of what I was just saying. The patient’s family is not a visitor in a hospital room. They’re not a disconnected voice at the other end of the phone in the middle of the pandemic. They’re part of the care team. They have an important role to play, both in the hospital and, of course, when the patient goes home. So bringing that advocate’s voice into the patient care discussion and the patient care decision-making is a critical piece of getting the best clinical outcomes, which everybody wants. The doctors, the nurses, the patient, and the family all want the same thing in the end. From a clinician standpoint, you have to treat the family as an equal in their own right. They’re not medical professionals, but they are equal in the care and the outcome that will result.

Kevin Pho: Now, you’ve been a patient advocate for some time now. Over the years, have things changed? Have things gotten better when it comes to that communication between the patient, the patient’s family, and the care team?

Bonnie Friedman: I think in many respects it is getting better. It still has a ways to go. When I first started advocating for my husband, it was very common that nobody would let you see the patient’s chart. You weren’t a medical professional. It was assumed, A, you wouldn’t understand it, and B, you had no need to see it. So I think in that respect things have changed a lot, and particularly if you, as the advocate, have the medical power of attorney, you’re going to get much better access to that kind of information.

I think a lot of the doctors are getting training in medical school now that is different from maybe years gone by, where the role of the family may not have been much of a consideration at all. Many doctors today have learned along the way how important the family can be in patient care. So I think it is changing in those ways.

I think there are some challenges that we still have to figure out how to overcome. One that comes to mind is the role of the hospitalist, which can be a great asset from a hospital management and patient care standpoint but can also leave real gaps in the conversation, because the hospitalist, unlike a PCP, doesn’t know the patient over a long time. They don’t have all that history. They don’t have all of that communication and understanding built up between them. The hospitalist is parachuting into a new situation and a new patient probably every 15 minutes, so there’s just no way they could possibly have that same background.

That’s a place where the family can play a really important part. As a family member, you may not be able to speak in clinical terms. You don’t have to. But you can be informed in giving a little history and then referring a hospitalist, or another specialist overseeing the case, to the right doctor to make sure they get more information. I can’t tell you how many times I have handed over the name and phone number of one of my husband’s doctors to a doctor in the hospital and said, “I’ve told you as much as I can. Please call this doctor, because they’re going to fill in some gaps here that I think you need to know.” I think we’re able, as advocates, to start making those imprints on the care of our loved ones. I think it’s getting better, but I think there’s still work to be done.

Kevin Pho: Sure. And my final question, Bonnie: Do you have a take-home message that you want to share with the KevinMD audience?

Bonnie Friedman: Sure. I think I’ve touched on some of it, but let me wrap it up with you, because I can’t say it too many times. The advocate is not a visitor in the hospital. An advocate is an important part of the care team. I would love for doctors to really come to appreciate, across the board, how big a role the advocate can play. I truly have helped save my husband’s life on more than one occasion, and I don’t think I’m overstating that, because I was able to say, “Here’s something you may not know, and it’s really important.” When a doctor will listen to that, it really can be lifesaving.

So the role of the advocate, working with the medical professionals, can provide for better clinical outcomes, can improve patient satisfaction, can reduce readmission rates, which I know everybody’s interested in, and, frankly, can save lives. I can’t think of a better message than that.

Kevin Pho: Bonnie, thank you so much for sharing your time and insight, and thanks again for being on the show.

Bonnie Friedman: And thank you for having me.

Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes