I will keep my advocacy sword polished and ready [PODCAST]

Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes

“I recognize that finding time for staff training and making sure the training is effectively practiced are challenges in a busy clinical setting. But taking care of patients means that both goals must be met to ensure safety, quality, and best possible clinical outcomes. As one who speaks and writes regularly about patient advocacy, I am more comfortable than most when it comes to finding my voice and speaking up – professionally and constructively. It may not be so easy for others. The bottom line is that clinical staff have an obligation to make sure all patients are well cared for from the time they walk in the door until they are ready to leave.

The Joint Commission’s 2021 Ambulatory Health Care National Patient Safety Goals address four critical areas of health care safety: patient identification, medication management, infection control, and prevention of medical errors. Based on my experience, two more areas are needed: patient communication and discharge protocols.

In the meantime, I will keep my advocacy sword polished and ready, honoring the spirit of Alexander Cockburn who died at age 71 of cancer. I’d like to think he advocated for himself as long as he could until his death.”

Bonnie Friedman is the author of Hospital Warrior: How to Get the Best Care for Your Loved One and can be reached at Hospital Warrior.

She shares her story and discusses her KevinMD article, “The advocate’s sword stands polished and ready.”

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 that are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today we welcome back on the show Bonnie Friedman. She is a patient advocate, and she wrote the book Hospital Warrior: How to Get the Best Care for Your Loved One. And she most recently contributed to KevinMD with this article, “The advocate’s sword stands polished and ready.” Bonnie, welcome back to the show.

Bonnie Friedman: Thanks, Kevin. It’s great to be with you again.

Kevin Pho: So we’ll get into your article in a little bit, but for those who didn’t get a chance to listen to our earlier episode, can you just briefly share your story and journey to where you are today?

Bonnie Friedman: Sure. My husband has had a series of hospitalizations over a long stretch of time, some of them very serious, some of them life-threatening. And I continued to learn more and more through his hospital experiences what I could do to advocate for him and ensure the best possible outcomes. Out of his last experience, which actually involved two hospitals and a nursing home and stretched out over a three-month period of time, I came away from all of that really brimming with an understanding and a knowledge about hospital care from the family standpoint, and what I could do to make sure he was getting the best care.

Out of that, I wrote the book Hospital Warrior, and since then I’ve continued talking about these issues. I blog, such as on your site, and occasionally do podcasts myself, to help spread as much information as I can reasonably spread from a layperson standpoint about caring for your loved ones. So that’s where I like to put my focus. And I continue, particularly as we go through such trying times as we are now in health care, to keep zooming in on that sort of thing.

Kevin Pho: Now, through your years as a patient advocate, and of course all your years online and writing your book, tell me some of the challenges that you faced as a patient advocate.

Bonnie Friedman: Well, I think one of the biggest things that family members face is that the health care system is really intimidating. It’s a bureaucracy unto itself, and the hospital setting is even more bureaucratic. And then you add on all these layers of medical terminology, and health care professionals who seem intimidating even if they’re not trying to be, and you as the family member can end up feeling like a stranger who’s lost in some foreign land. You don’t understand the culture, the setting, the language, the terminology, and yet you’re trying to somehow penetrate the system and do what you can for your loved one. It’s really daunting.

And so I like to focus on what you can do as a family member, and to some extent what you shouldn’t do. So I think that’s probably the biggest challenge. People are intimidated, they’re frightened, and of course they’re emotional, because someone they love is sick.

Kevin Pho: How has the pandemic affected patient advocacy?

Bonnie Friedman: Oh, it’s in horrible ways. Some of the biggest challenges have come about when hospitals and care facilities have felt the need to essentially shut down when it comes to outside visitation. They don’t see the family as part of the care team. They see the family as just visitors who might bring germs into the clinical setting. And for the patient at the other end of that, they’re isolated. They have no one to speak on their behalf. They don’t have people in that setting who really know them, who know their history the way a family member does, who can speak out for them.

And so I think it’s made the challenges of health care all the worse for the doctors and nurses, who don’t have as much access to the family as they really need to understand the history; for the family, who has to just battle to get a word in edgewise somewhere along the line; but most of all for the patient, who is missing out on all the things that their family members can do as solid, strong advocates for them, connecting the dots, speaking out, making sure they understand what’s going on, etc., etc. I think this has been a horribly challenging time for all parties. And I think it’s laid bare some of the underlying problems that were going on in health care delivery, and now we see them in greater, magnified focus because of the pandemic.

Kevin Pho: All right, let’s talk about your most recent KevinMD article, that’s titled “The advocate’s sword stands polished and ready.” Now, for those who didn’t get a chance to read your article, can you just walk my audience through it and share the story of why you decided to write it?

Bonnie Friedman: Sure. Most of my focus, as I’ve mentioned, has been on advocating for others. But in this case, I found myself to be the patient, and I had to figure out how to advocate for myself. And it was very challenging, and it reminded me anew of how hard it is, even for someone who’s used to doing it.

So I actually had a couple of experiences in an ambulatory surgical care facility for some eye procedures, which were actually pretty routine. One was for cataracts, and the other was a follow-up procedure two years later that had to do with removal of a cloud formation behind the implanted lens. They call it the YAG procedure. And in both cases, I personally had some difficult experiences with my care in this ambulatory facility. I didn’t feel, as a patient, that my patient needs were being attended to the way they should, not by the surgeon, my ophthalmologist, who I thought did a great job, but by the ambulatory care clinic staff.

And so those experiences involved lack of proper information for me as a patient, and most dramatically, lack of proper discharge procedure. And so I wrote about those two things, and talked about how important it is for the ambulatory care staff to be attuned to what patients need and how they can serve those needs, certainly in a better way than my needs were served.

Kevin Pho: So paint us the picture of that discharge process. What exact information did you find was missing?

Bonnie Friedman: Well, the discharge process involved my being sent home with my husband while I was still pretty heavily sedated. And we went around and around as to whether they gave me too much sedation or it just hadn’t worn off as quickly as they thought it might. And this was all after the fact, because in the moment, I was barely able to process what was going on. I wasn’t able to stand up or walk on my own, and I really was in no condition to be discharged.

And so I followed up afterward with the clinic, and really got initially not much of a response to what I was calling out, and eventually worked my way up their food chain until I talked to the director of the clinic and discussed what had happened and what some of the fallout from that was for me. I felt I was not cared for well in that part of the process. I certainly was not able to really understand anything that might have been said to me as I was leaving the clinic, in terms of my follow-up instruction and care. I had to go back and look at what was in the discharge papers, and rely on what my husband remembered, and talk to my doctor’s office in follow-up as well. But that should have all been part and parcel of what went on with discharge.

And I knew enough from other things I’d done, certainly from a hospital care point of view, what discharge should be, and I think it should really be any different in any ambulatory setting. And so I don’t know that this was unique to this one clinic, but I’ve heard other stories, read other stories. It’s not a stand-alone issue.

Kevin Pho: And when you brought these concerns up with the director of the clinic, what was their response?

Bonnie Friedman: She was receptive to what I had to say. I’m sure she had been well briefed by then, because I’d already talked to several people on her staff, and she didn’t know where I was going with this. I think there’s always a sense of a little defensiveness and worry: Is she going to follow up? Is she going to take some action? Are we going to get sued? And that was not what I had in mind at all. So I laid out for her in good detail what had transpired and what I thought they needed to do about it. She listened. She agreed that some follow-up was needed. I don’t know if she did the things that she said she was going to do.

I was back in that clinic, as I said, two years later. I didn’t have a discharge issue, because the procedure was so different. There was no sedation. I walked out of there like I would have expected to. I felt I was heard, and beyond that, I had no way to know if she did everything she promised to do. But it is an issue. It’s certainly an issue in hospitals too, and there are lots and lots of stories about patients getting their discharge instruction as they’re wheeled out the front door. And in this case, I think there were parallels. I did have to be wheeled out. I couldn’t walk. And yet it’s an ambulatory clinic. They should have been paying attention to that.

Kevin Pho: As you know, during the pandemic, hospitals and clinics are tremendously short-staffed. There’s, of course, the Great Resignation, and a lot of nurses and support staff and clinicians, for that matter, are certainly trying to do their best, but the numbers just aren’t great enough. Now, in this context, what are some ways that patients can speak out and advocate on behalf of themselves or their families?

Bonnie Friedman: Well, I think one of the things is to understand, as best you can as a patient or a family member, what to expect in the ambulatory setting. I had done as much preparation as I thought I could, in terms of reading the procedure that was going to be done, reading about what to expect in the immediate follow-up.

I had another experience where I actually had a total knee replacement in the middle of the pandemic at an ambulatory surgical care facility. I went in there having been told I was having a partial knee replacement, and so I did a lot of research on that, only to find out that morning at six o’clock that I was going to have a total knee replacement. I was floored. And so even when you do as much research as you think you can, it’s not always going to prepare you for what will happen.

In this case, I had a lot of discussion with the surgeon about the fact that I thought he pulled the rug out at the last minute. I certainly would have prepared better for a total knee replacement if I had known that’s what I was going to have. But I think you do as much research as you can, and ask as many questions as you can. It’s very hard to anticipate everything, of course. And when you’re the patient and you’re anxious, and you’re maybe even in the process of being ready for sedation, you’re not equipped to do a lot of your own advocacy.

And here’s where the pandemic has really made it hard. I couldn’t have anybody with me. So many patients find themselves in that situation. There’s no one there to speak out for them. And so that’s where I put. I know staffing is short and stress is high, but I do think that the clinical staff needs to be all the more alert to what the patient is going through in a situation like that. There’s high anxiety. There are all types of issues for the patient, and they have no one with them to help them sort through it, to take notes on their behalf, or even speak up for them and ask the right questions. So this period we’re in, we thought we might be coming out of, and it looks like we might be going right back in, is making it harder and harder, we know, for the clinicians, but for the patients and their families too.

Kevin Pho: We’re talking to Bonnie Friedman. She’s a patient advocate, and she’s the author of the book Hospital Warrior: How to Get the Best Care for Your Loved One. Bonnie, what are some of your take-home messages that you want to leave with the KevinMD audience?

Bonnie Friedman: Well, I think for the administrative staff at the clinics, there are things that can be done up front. I know in the case of my knee replacement, when I got there at six with no coffee to help me through, they handed me a ream of papers to start reading and signing. There was no need for that. That could have all been done, better for myself and better for them, in advance. Had they sent me all that, I could have read it with a clear head, known what I was signing, and felt more confident. In this case, a lot of pressure, a lot of need to go through a lot of things that I might not even have fully understood in the moment, and just keep pushing that paper. So I think presenting patients with as much information up front as possible would be a really important takeaway message.

The second is for the doctors and nurses to do their best to make sure the patient understands what’s going on, and if there’s a family member present, to make sure they understand what’s going on and have the opportunity to ask questions for the patient as well. Discharge protocols, we’ve talked about here. I think that’s really important. And along with it, the training that surgical centers need to make sure they are giving their staff and following up with their staff. They may need refreshers regularly. I know it’s hard. Timing is tough. There are a lot of challenges. But for a patient experience to really go well, they need to do this.

And the last thing I’d like to put out there is that I’d like to see the Joint Commission incorporate some of these things in their ambulatory health care goals. They have several that they set for this current year, 2021, and they have pretty much the same or similar ones set for 2022 that involve things like safety risks and prevention of medical errors, etc. But I didn’t see anything in their standards that addressed patient communication and discharge protocols that are set well and properly ensured. So I do have a shout-out there to JCAHO to take a look at their patient safety standards for ambulatory care and see if they’re addressing these issues. I think they need to do that.

Kevin Pho: Bonnie, thank you so much for coming back on the show and sharing your time and insight.

Bonnie Friedman: Thank you so much for having me, and happy holidays.

Listen and followApple PodcastsSpotifyYouTubeMore apps · Browse all episodes