Conversations about End of Life

Dr. Karen Knops (1s):
What we’re really trying to do in any difficult conversation is if the person a sense of control, I think a lot of what is needed for these to be healing conversations is we have to earn, we have to earn this person’s trust. We can’t just take it for granted because we wear a coat or what have you

Announcer (17s):
Welcome to Difficult Conversations Lessons I Learned as an ICU Physician with Dr Anthony Orsini. Dr. Orsini is a practicing physician and the President and CEO of the Orsini Way. As a frequent keynote speaker and author Dr. Orsini has been training health care professionals and business leaders how to navigate through the most difficult dialogues. Each week you will hear inspiring interviews with experts in their field who tell their story and provide practical advice on how to effectively communicate. Whether you are a doctor are faced with giving a patient bad news, a business leader who wants to get the most out of his or her team members or someone who just wants to learn to communicate better, this is the podcast for you.

Dr. Anthony Orsini (1m 2s):
I Am honored today that the Orsini Way has partnered with the Finley project to bring you this episode of Difficult Conversations: Lessons I learned as an ICU Physician. The Finley project is a nonprofit organization committed to providing care for mothers who have experienced the unimaginable, the loss of an infant. It was created by the founder, Noelle Moore whose sweet daughter Finley died in 2013. It was at that time, that Noelle realized that there was a large gap between leaving the hospital without your baby and the time when you get home that led her to start the Finley project. The Finley project is the nation’s only seven part holistic program that helps mothers after infant loss by supporting them physically and emotionally.

Dr. Anthony Orsini (1m 46s):
They provide such things as mental health counseling, funeral arrangements, support, grocery gift cards, professional house cleaning, professional massage therapy, and support group placement. The Finley project has helped hundreds of women across the country. And I can tell you that I have seen personally how the Finley project has literally saved the lives of mothers who lost her infant. If you’re interested in learning more or referring a family or donating to this amazing cause please go to the Finley project.org. The Finley project believes that no family should walk out of the hospital without support. Well Welcome to another episode of Difficult Conversations: Lessons I learned as an ICU Physician.

Dr. Anthony Orsini (2m 27s):
This is Dr Anthony Orsini and I’ll be your host today. Today I am very blessed because not only do I have a great guests that you’re going to learn from Karen is also have a friend of mine. And she’s someone that I look up to and someone that I know that the audience will really learn from today, Dr. Karen Knops is a palliative care physician and creator of programs designed to improve the experience of patients with serious illness to receive their medical degree from the David Geffen school of medicine at UCLA, and is board certified in internal medicine. Upon completion of her fellowship training in palliative care and medicine at Stanford university, she made her way to New Jersey where she went to create and lead the division of Palliative and Supportive Care for a 600 bed teaching hospital, which was part of the larger Atlantic health system.

Dr. Anthony Orsini (3m 13s):
That’s where I first met her. During her time leading to division of palliative care at Morristown Medical center of Atlantic health systems, Dr. Karen Knops created onsite training programs for physicians from multiple specialties, as well as a nurse practitioners, physician’s assistants and other healthcare professionals. She served as hospice medical director for Atlantic hospice and as a clinical assistant professor of medicine at the Mount Sinai school of medicine. Dr. Knops has been recognized as a top doctor in palliative care and medicine in both in New Jersey and in Seattle where she now lives. Dr. Knops work is deeply influenced by her own early experiences as a patient, her models for communication and understanding patient perspectives have been published and share nationally and internationally.

Dr. Anthony Orsini (3m 59s):
And she has a passionate advocate for improving patient and clinician experience and compassion in healthcare. Her current role is medical director of palliative care services at Overlake medical center for clinics in Bellevue, Washington, where she teaches clinician communication techniques as well. Karen, thank you so much for being here.

Dr. Karen Knops (4m 19s):
It’s great to be talking with you.

Dr. Anthony Orsini (4m 22s):
I’m really very happy that you’re here today. As I said, in the introduction, you were a good friend, someone that I look up to and someone that I know everyone’s going to learn from. As you know, and you and I had discussed, I’m really, really very blessed in that in the first 48 hours so we just recently launched on August 4th and then the first 48 hours of our Podcast, we hit the Apple top 200 charts and make it as low as number seven in the Medicine subcategory. So we’re really very pleased. I’d like to take credit for that, but actually I can it’s because we’ve had a phenomenal guests like you, and I’ve been very, very blessed that people are saying yes.

Dr. Anthony Orsini (5m 2s):
And, and helping me fulfill my promise to the audience, which is that after each and every single podcast that they will feel inspired and that they will learn something about communication. So I have no doubt that you’re going to help me with that today.

Dr. Karen Knops (5m 16s):
Well, I sure hope so. I love your promise so much, and I really, I just want to acknowledge you, first of all, for talking about something that I think more than ever, we, as a society should, should be thinking about, which is communication and how do you really connect with someone with a different perspective or have a difficult conversation. So I just, I deeply applaud you for even getting this going and I’m so glad it’s been successful.

Dr. Anthony Orsini (5m 40s):
Well, thank you, you know, in medical school, as you know, in medical school, it’s all about algorithms and learning and learning about diseases. And it’s very competitive. And we had a guest Dr. Dike Drummond on a few weeks ago who talked about physician burnout and why that occurs. And I think the biggest problem we have in medicine is that we haven’t spent enough time speaking about communication and speaking about that connection. My favorite word is relationships with the patients that we have. To just start out I had mentioned in your introduction that you, where a patient when you were very young and that really kind of molded you or got you interested in medicine.

Dr. Anthony Orsini (6m 22s):
I want to hear more about that. You know what, I don’t know if we know this, but I had a seizure disorder when I was young. I spent a lot of time in clinics and a lot of time in the hospital in a lot of times at the doctor’s office. And I think that got me interested in, in medicine and influenced who I am right now. So do you mind just sharing your personal story of when you were a child and you had the medical issues?

Dr. Karen Knops (6m 46s):
Sure. And I think that is something you and I, when we met each other, we had as a common experience, that idea that medicine is not perfect. I think, you know, when you’ve been a patient, you fully understand that. And there’s a lot that we can do and should be working on, especially around communication. My own experience has a patient started. It was kind of when I was 12, I have pretty significant scoliosis. So curvature of the spine. And so starting when I was 12, all the way through 22, about a 10 year period, I was going to the orthopedic surgeons pretty regularly and had a whole process of getting frequent X-rays, ultimately having to wear a brace for a couple of years during high school, and then make a pretty difficult decisions around whether to have surgery or not because my curvature of the spine continued to progress.

Dr. Karen Knops (7m 42s):
And so I think for me, it was kind of a interesting experience to be 13, 14 years old and talking to orthopedic surgeon that gentlemen I happened to see was probably in his early sixties and I just often felt intimidated. And I’m fortunate my mother is a science teacher. So I’ve felt like I, I came in with a lot of advantages. A lot of people don’t have, and I still felt completely intimidated in those interactions. Now it was just sort of struck by how often, what I was concerned about. Wasn’t reflected in the conversations that I was having when I was seeing the surgeon.

Dr. Karen Knops (8m 23s):
So that’s why I would say is something that really got me thinking about this at a young age. Got me interested in medicine. My father had also had cancer. So I’d spent a lot of time around hospitals and just was intrigued by that. But it was really the interaction’s the medical decisions that part of it was what drew me into medicine.

Dr. Anthony Orsini (8m 42s):
And you had said that you felt that everyone you had told me previously, they just thought that everybody was taken care of the same way as if they were just some kind of same exact patient, the knee, as people say, sometimes Physician to think of us as, as a disease and not a person.

Dr. Karen Knops (8m 57s):
Really, where I was being treated. They literally had, they called it scoli day so that they wouldn’t have to change the plate on the x-ray there’s a longer plate that they use. And so there was literally like this army of all teenage girls kinda coming in, you know, 12, 13 years old. And this is a sort of a long day and long process where you get your x-ray, then you sit, you wait for the, x-ray see the surgeon and yeah, you very much are a number.

Dr. Anthony Orsini (9m 26s):
Tell us more about that. Your orthopedic surgeon may not have been the most compassionate person in the world, and it didn’t seem to,

Dr. Karen Knops (9m 33s):
Yeah, he may have been for example, but the difference in perspective is just so vast sometimes, right? You can be a very compassionate person. And yet I think if you haven’t been a teenage girl, if you haven’t had that actual experience, it’s easy to miss things. Or it’s easy to have patients feel like a number. And I don’t think any of us go to work intending to make people feel that way. And yet that’s what that health care system does.

Dr. Anthony Orsini (10m 3s):
When I give lectures. And I do on my workshops on patient experience or breaking bad news, I do 1000% believe that everyone is compassionate. There’s empathy in all of us. And also I believe that almost every physician goes into medicine for the right reasons, but maybe not a hundred percent, but yes, there are exceptions, but what happens along the way is that we sometimes don’t remember to bring that compassion out or don’t know how to do it, or maybe it got buried in there. I think you said something about your orthopedic surgeon who said, it’s not going to be painful, right?

Dr. Karen Knops (10m 42s):
Yeah, it is that. So that’s what sort of interesting as, as I really feel like I can almost even as a really young person, since he was trying to be compassionate, he kept repeating. When he tells me I will need a brace, you know, there won’t be any pain. There won’t be any pain. You’re just going to wear a brace, but there won’t be any pain. And then just me walking out, not having any concept of what that was really going to mean, but my entire life, as you might imagine changed. And in ways that I had zero comprehension of, I went to needing to shop in the men’s section, for example, cause I couldn’t find clothing to fit around my brace. There I was, you know, 15 years old and trying to find something that I could wear was a challenge to me.

Dr. Karen Knops (11m 25s):
I couldn’t sleep in class anymore. I had only one sport I was good at in which was swimming, but I had been a butterflier and I lost all of my core body strength over a period of a couple months and had no idea that was going to that happened. It was just the swim season came on and suddenly I was terrible. Nobody talked about core strength back then, by the way that this was a little while ago, now it seems obvious, but it was a shock to me to get in the pool and suddenly I am not a competitive swimmer anymore. I can’t keep up. And I get to be out of my brace for one hour a day and you know, to kind of have it be that I was experiencing these various losses and to be needing, to find a new story for my life was where the hard work was.

Dr. Anthony Orsini (12m 13s):
And that’s painful for a young girl to all of a sudden have her whole life changed. And I always say breaking bad news are giving tragic news. It is all relative. So it may not be a big deal that you are wearing this brace. But to a young girl has to wear the brace and shop in the men’s department It is very painful, right? It’s an emotional pain. And I think we forget about that in medicine to me, I have a feeling that is what kind of shaped you to the at least contributed to who you are now.

Dr. Karen Knops (12m 44s):
Right? Well, I think it absolutely shaped who I became as a clinician. When you wear something like that, that is physically visible. You understand how quickly I came from just being quote unquote, normal, two people, really not knowing how to interact with me, people being afraid of me or not sure, you know, did I have cerebral palsy, might I also have some cognitive issues. And there was this whole layer of communication you could say going on when people would just see me working at McDonald’s. And I had not had to deal with that before. A lot of people who live with some type of disability we’ll comment on being invisible. And my experience has nothing near what a lot of people live with throughout their lives.

Dr. Karen Knops (13m 28s):
But it was enough that I said, you know what? This is, this is very important. And I don’t want to waste this experience in some way, cause I learned a little bit and If, you know, if you can kind of use that to help others. I think that’s what all of us are looking for as part of healing.

Dr. Anthony Orsini (13m 44s):
As, as I mentioned, I had epilepsy or seizure disorder when I was younger every month, my parents would drive me to Columbia Presbyterian hospital across the bridge from New Jersey. And we’d go through the, over the George Washington bridge, go into a gray elevator. And if you ask me, what do I remember? I don’t remember the name of the doctor. I don’t remember what medications I was on. I remember. And I talk about this in my books. I just remember the word gray, everything was grey. The hallway of Columbia Presbyterian was grey. The chairs were grey. I sat in the waiting room for two hours just to wait for the doctor who barely introduced himself to me and grant it. When I started, I was six and by the time I get done, it was 14.

Dr. Anthony Orsini (14m 26s):
So I’d grown up and he just takes a little reflex hammer, hit me up on the knee, looked in my eyes and gave me a prescription to say, I’ll see you next month. So my entire memory of medicine was grey. And maybe that’s why I was so dedicated to try to make my patients life a little bit less gray. So let’s talk about palliative care medicine and just for the audience you and I met, it was back in 2011 when we were both at Atlantic health and I was starting the breaking bad news program for those people who don’t know what the break bad news program is It is something that I took 10 years to develop. We take Physicians and other health care providers, both senior and junior and we bring them through videotaped improvisational role-playing with professional actors and they have to give tragic news and we videotape those interactions.

Dr. Anthony Orsini (15m 14s):
And then we bring the participant into another room and we watched our video with them. And when I started the program, I knew immediately that I needed help from palliative care people. And that’s how you and I met and we hit it off right away. And I remember Karen is the first resident we were doing in pediatric residents at, at that time. And the first resident went through the videotaping. We sat down with him, you started to speak. And I thought the two words, but I remember his golden tongue. And I was with Elizabeth, Christ, who is one of our lay people, instructors, Cheryl Vasallo who also is the palliative care person that has a golden tongue in, there were a couple other people, MaryAnn Lo Fermento and you spoke.

Dr. Anthony Orsini (15m 59s):
And I went, God that’s good. I’ve got to use that. That was so nice. What great advice that I love, the way she put that. And I stole a lot of stuff from you. I don’t mind saying, but that’s what we do in medicine. When we hear something and I tell the residents and the senior doctor steal stuff from me too. Yeah. But I’m wondering you did the palliative care fellowship, but was there somebody in your mentorship, was there somebody that either made you go into palliative care or when you got to palliative care that you’ve just melted when they spoke to the patient and said, I’ve got to write that down and I can remember that.

Dr. Karen Knops (16m 32s):
Well, it’s interesting. I actually would say the person I learned the most from the kind of shaped who I wanted to be when I had the opportunity to work in clinical medicine was actually the orthotist that took care of me when I was a patient. As I said that it was just a, such a contrast to what I experienced from the physician that I thought if I could say his name was Chuck. When I really wish I knew his last name is Chuck. If you’re out there in Sacramento, still, you get a shout out. But what struck me was he talked to me like I was a person and it’s such a small thing. It’s such seems so obvious, but the, that was the contrast. And that that’s never left me that when I went through medical training, you learn all that jargon is like learning a second language and there are constraints that you have time and all these things, but it doesn’t take more time to speak to someone like they were a person and that’s never left me.

Dr. Karen Knops (17m 27s):
As far as palliative medicine goes when I was in training, I actually had not met a palliative care physician during that time. It was not that long ago, almost 20 years ago now, but I had very little exposure as this is true in most medical training, even now there’s pretty little exposure to hospice or even palliative care clinicians. And so what happened was I just had this interest in the conversations themselves in how can we better support patients who are really grappling with big, big stuff. It bothered me that I couldn’t do it well. And even, I wouldn’t say, as I looked around at my attending physicians, mentors, they can be excellent in other parts of care, but even they seem to struggle and couldn’t teach me easily.

Dr. Karen Knops (18m 21s):
And so at the time I graduated from my residency, there were about seven accredited palliative care fellowships in the country at that time. But I had been so inspired by just two days. I had spent with a hospice nurse that I thought, you know, I just want to let me just do this year,

Dr. Anthony Orsini (18m 38s):
Two days with a hospice nurse that, well, she must have been an amazing person.

Dr. Karen Knops (18m 43s):
And it was the patients again, like bringing it back to be able to go to people’s homes as opposed to what I spent hundreds of hours seeing in the ICU, you know, people dying in the ICU or people coming into the emergency room. And I just felt such a sharp contrast between what I saw in the hospice experience versus quote unquote medicine that as it had been presented as the quote unquote normal part of medicine. So that’s what gave me the strength to kind of do the job. Like, let me just do this training. I will never regret getting better at these conversations that I knew for sure. And I didn’t feel it It was okay the skills I had when I finished my basic training, I did not feel I was where I wanted to be.

Dr. Karen Knops (19m 27s):
So the rest is kind of, I took a, a kind of a little side adventure. I did not expect to go full time into hospice and palliative medicine, but that’s what has allowed me to continue doing what I’m passionate about. So I’m super grateful for that.

Dr. Anthony Orsini (19m 44s):
And I’m so glad you stayed in it because you’re so good at it. And as I said that, you know, I respect all my palliative care people that I’ve worked with are amazing people. I use them all the time. I try to get them involved early, as opposed to some other physicians who would call you in the last second. Yeah. But just like anything else I would, I don’t want to do the thing. It’s not a video cause it might make you blush, but I’ll say that, you know, you and Sheryl, all of us are really among the best of the best. I, I respect you so much and that’s why I wanted you on this program and SherylIf you’re out there, you are next. So you will be on our program to soon. Let’s talk about what I consider the most difficult conversation of all the conversation.

Dr. Anthony Orsini (20m 30s):
When you have to sit in a room, speak to a family about mom or dad or a child or family member and talk about end of life discussions and decisions that people make. And it’s something that physicians should be better at. It’s something that most physicians run away from. And it’s not because they don’t care it’s because they haven’t been trained. And thank God we had palliative care of people, but I always get a little annoyed when we relied too much on the palliative care people. Cause you, you should be a team member with us and we should do it together. After all the patient has a relationship with me and I’m bringing you in, but you’ve already inspired us. So let’s go to the second promise.

Dr. Anthony Orsini (21m 11s):
And that is what is your approach when you go into the room to have that conversation with the family about end of life and just a few tips that you can give that clinician out there that has to do it when Karen Knops is not there.

Dr. Karen Knops (21m 25s):
Yeah. Well I think you make a good point that we want more people to feel skilled in these types of conversations, not just for patients, but I think clinicians will like who they become when they try to become better at this. You will like what that process does for you. It’s really worthwhile. I think one of the biggest concerns I run into with, when I talk about this is a lot of times we were feeling like it’s hard to have it come to life conversations cause we’re not always sure. We’re not always, we are not God. You know, we don’t know a thing I say a lot is you don’t have to be right. You just have to have a plan.

Dr. Karen Knops (22m 5s):
And that’s what we’re trying to impart is if there is uncertainty, how are we going to deal with that uncertainty? It’s okay to name the things, you know, uncertainty, there’s some complexity to this situation, but I think often, especially for doctors, they feel so obsessed with needing to be right, that they use that as a barrier to the conversation or feel it as a major grey area. So I, I think, you know, one of the basic things is if we are trying to give prognosis understand, you should get a range of what might happen. And then also give us a sense again, if it’s so uncertain that something could change tomorrow. Well, that’s good Information a lot of people would want to understand that so that they can plan.

Dr. Karen Knops (22m 48s):
Right? So I think that we put too much on knowing exact prognosis as, as being a prerequisite. It’s not mandatory. So that’s a big one. I think as far as having the conversations themselves, this is where I lean on what I was trained in fellowship. My mentors were a VJ Periyakoil, and Gary shin who had trained at Harvard, VJ, I think was had been at Stanford for as long as I can remember. I don’t think she had done formal palliative care fellowship ’cause she had been in the field of geriatrics for so long, but this is where, you know, a lot of what I’ve learned, I’ve stolen from other people to use your name.

Dr. Anthony Orsini (23m 28s):
You know,

Dr. Karen Knops (23m 28s):
We are very promiscuous around are, you know, other people’s terminology or phrases. So I would say, I like to simplify things as much as I can. I also, one of my special kinds of things from childhood, I have dyslexia. So I always had to listen to things when everyone else was reading. And I like to try to simplify everything for myself. I’m the best student I have. So what I will do is kind of take some of what I’ve been taught. And I like to say what we’re really trying to do in any difficult conversation is give the person a sense of control. I think a lot of what is needed for these to be healing conversations is that we have to earn, we have to earn this person’s trust.

Dr. Karen Knops (24m 12s):
We can’t just take it for granted because we were a coat or what have you. So the key techniques for really demonstrating trust and compassion are I use them as a, the letter P is what I remember. So on the front end of these conversations, it’s good to get permission. This comes up as a term in the literature, a lot in hospice and palliative medicine is it’s okay to ask, Hey, can I bring up a topic that sometimes a hard for people to talk about? But I thought I just wanted to see where you’re at with this. Is it okay if we talk about what’s ahead? So it okay. If are you with the kind of person who likes to know a lot of detail about your prognosis?

Dr. Karen Knops (24m 52s):
Again, we did not, as clinicians are required to be all-knowing is not having the golden tongue, its having a golden ears.

Dr. Anthony Orsini (24m 60s):
I love that point, that active listening first. So they get that permission. The next P is kinda related to that. You use paraphrasing. So when we ask permission, you know, tell me where you’re at with this right now. Really recapping listen really, really carefully too. What is being said to you and then say it back, reflect it back to the person as their talking. For clinicians, I think is also important as we paraphrase. You know? So maybe I’m going to say what your journey has been as long as you’ve explained where you’ve been on your cancer journey. As I say that back into the paraphrasing, I want to include a little bit of praise in that.

Dr. Karen Knops (25m 42s):
I think by default, a lot of people are feeling a little bit of shame or a feeling, a little guilt. Maybe I used to be, you know, their friend told them to try juicing and they didn’t do that. Right? So you never know what people are holding. Usually there are things like that. So to recap and say at a point, what I’m hearing is you’ve really tried everything you felt was available to you, you’ve really done your best. You know, this was not easy circumstances and you’ve really done your best. That’s what I’m hearing you say. So using that paraphrase gives them a sense of control over what’s been said they can hear and then process. And that is part of that healing. We’re also helping them retell their story in a way, you know, to talk about my own experience of going from thinking, I was going to have a certain teenage girl experience and then having something, that was just very different.

Dr. Karen Knops (26m 32s):
And so we’re trying, I think in these conversations to help people have a sense that they’ve still have a story or they might feel in between, they might be kind of grabbing at straws, but this will go on and we can still go forward. So that’s using the paraphrase. If we’re trying to bring up end of life conversations. I like if we’re trying to break bad news to use the word preview, to describe that. So to say, unfortunately the news is not what we were hoping for. Okay. So you can give them some sense of what’s ahead. I use the p’s because when I learned this, ya know, gosh, a couple decades ago that this is a warning shot and I am not a fan of the war analogies and in having this conversation so

Dr. Anthony Orsini (27m 18s):
Well also that comes from the spikes. Acronym when I teach it, I say to them, the residents instead of is coming out and say I have bad news, to show that you have bad news. It’s always better to show and we can do our conversation. They’ll get it. And the warning shot always seems to be, as I say, you don’t prepare somebody for bad news by saying I have bad news. Cause that is the bad news, right? One of the most difficult things that we do is palliative care. People are involved in his, when you have a family that has to make that decision. Do I put grandma on the ventilator? She’s 90 years old, she has dementia. And one of the things that physicians are responsible for doing his, to help them get through this process of whether we’re doing something to grandma or we’re doing something to help her grandma.

Dr. Anthony Orsini (28m 10s):
and I have on my own views and I think I know yours because we spoke. But one of the questions that we get all the time as physicians is what would you do? And I was trained to say, well, I’m not you, which I think is totally wrong. That’s not the answer. I think that’s a cop out. What I say is, I’m not telling you what to do. I’m telling you what I would do if this were my grandmother. And I think that you talk about trust. I think that the form’s that instant bond. Well, what are your thoughts about that?

Dr. Karen Knops (28m 39s):
I think that’s often what people are looking for with that question. It’s not just about the decision it’s about, are you willing to put yourself in my shoes for a minute? I think it’s a good way of requesting that. Also people can become really overwhelmed by just the sheer amount of information. We see this when we do the training, when you and I worked together that the amount of jargon that just sort of comes flying out or the pace at which that’s the other P that I talk about a lot in terms of giving a person a sense of control over that conversation is we really want to chunk that information, prioritize it and then pace it.

Dr. Karen Knops (29m 21s):
You know? So what’s the biggest thing that they need to walk away understanding. Well, it might be that no matter what we do, our grandma’s life is extremely limited. We’re in her last chapter. Again, we can’t say exactly how long is the chapter, but it’s a really important for them to understand that that is the highest priority piece of information. So I think when we get that question, what would you do? It’s often a sign that someone might be overwhelmed by all this gobbledygook we have just said, and it was like, okay, cut to the chase. How do I do this? I think when I get that question, it’s often, you know, you validate how hard this is and normalize it it’s is so hard to be in this situation.

Dr. Karen Knops (30m 4s):
And if I were in this situation, I think you can tell them, you can kind of show the process you might use. And then what you’re doing as you’re honoring that you are saying, I see you want me to put myself in this situation? And I will do that. I think I would look at what my grandmother, what I know about her, or I would try to remember things she had said about what if she were in her last chapter. So you can give people a framework from that. But I think it has a little bit dismissive and can come off wrong if we just say, Oh no, I can’t, I can’t go there.

Dr. Anthony Orsini (30m 42s):
That’s what we’re taught Karen, which is an, you know, so individually that breaking bad news program has trained, I think over 5,000 doctors now, individually and you know, from doing it with me, how many times someone says that while I was told that I shouldn’t give my opinion. And I, I just say to them, you know, you bring your car to the mechanic, the mechanic, doesn’t say, how would you like the alternator fixed? Or would you like the generator fixed? Would you like the battery? You’re the expert. And they don’t have to do what you would do, but with their asking you your opinion. And to me, that’s a real gift. And really what you’re doing by saying, this is what I would do is that your telling them it’s okay, whatever decision you make is that you’re giving them the freedom that if you decide to not intubate, grandma put on a ventilator, that it’s a loving thing to do.

Dr. Anthony Orsini (31m 39s):
It’s not selfish. And sometimes they’re just looking for that permission wouldn’t you say?

Dr. Karen Knops (31m 43s):
Right, right. I think not everyone is looking for even the same thing with that question. So a great response is to first say, can you tell me more about why your, your asking me, I want to respond to your question, but first it can help me to understand why you’re asking. And often if you will see often more than what’s said, but you may see in their response that the, what are feeling is a sense of guilt that they feel they don’t really like the idea of having her on the ventilator, but they, again, what you were saying, build a great sense of guilt around that, a fearful that of being judged. And if the doctor says that it’s okay, then I can, you know, if my family judged me, I can say, this is what the doctor recommended.

Dr. Karen Knops (32m 28s):
And so people need really different things. I would say in response to that, another concept is you may be able to give a more specific answer If as you’ve asked someone to tell their stories. So tell me, you know, earlier in the conversation, tell me about your grandma. And you’ve kind of been able to paraphrase back to them. Oh, it sounds like your grandma was a woman who really valued her independence, right? So you may name some of the values that they are giving you, as they’re telling the story, you can reference those values than if they, if they bring that question as well. What I heard you say was that your grandma really put this on her, you know, kind of roll as a grandma first and foremost.

Dr. Karen Knops (33m 8s):
And she believes she was going to go to heaven. ’cause she had this really deep and abiding faith. Do you feel like the ventilator, if it’s only going to prolong probably her last moment, is that really in line with what her values are, is that what she envisioned for her last chapter? Yeah, just to have a range of responses and not duck behind our clinical coats and say, I just can’t.

Dr. Anthony Orsini (33m 32s):
And what I would say to the audience out there that both medical and nonmedical, that when you have these difficult conversations and you do them correctly, I think it’s a real gift to the family. It’s a real gift. You feel that connection instantly as the neonatologist for 20 years in, I save preemies lives on all the time. The thing that touches me the most is that now I got 14 years going. Now I have a family who’s baby died 14 years ago and they still send me Christmas cards. And I know that you have probably multiple stories of that. And you really made a difference. As I say, when the family needs you the most.

Dr. Anthony Orsini (34m 13s):
And that’s where our palliative care people really, really help us. And I’ve learned so much from you and hopefully the audience will, we’ll take those few tips. It’s not something you can learn and a few minutes, but it’s, it will definitely, they can walk away with some good communication tips, but just in closing, breaking bad news, isn’t about just in the life you mentioned before, the bad news for you, it was wearing the scoliosis brace. The bad news for me was that I had to take medication and looking at gray walls for three hours a day, bad news can be telling a basketball player that he can play because he just tore his ACL. So tell me about the techniques that you use for end of life and breaking bad news to work for everyday life and every day medicine.

Dr. Karen Knops (34m 60s):
Right. Yeah. The biggest thing that I’ve learned, kinda going back to that idea of, you know, like who you become, if you are really devoting time and energy to getting better at it at hard conversations. I think the biggest takeaway is I’ve had in training have been around how to just deal with people’s emotions and how to deal with my own emotions. And it’s not just around the end of life conversations. Is that what was interesting to you? And I’ll talk another time again, about a model I’ve used for communication. And I remember doing this audio conference that this person says, gosh, if I get so panicked before I have to talk to administrators, I’m going to use this before I go into my next, you know, meeting with our chief financial officer, because I need to have a framework to kind of lean on.

Dr. Karen Knops (35m 47s):
So I think it can reduce anxiety to have a sort of basic framework you can lean on for a difficult conversation. So that’s number one, you referenced the spikes model. I think the most helpful thing about that is it was a framework. It was one of the first time’s people really deliberately said, you know, you can give your mind a bit of a map or a structure to follow in a difficult conversation. The other is being able to respond to difficult emotion and being able to have mindfulness on the front end of these conversations. So to be aware of and anticipate, gosh, what, what might I do or how might I feel if someone gets really angry?

Dr. Karen Knops (36m 30s):
Like if I know I have trouble dealing with people who are angry, it was good for me to practice a New Jersey all those years. Cause I very commonly expressed emotion and new there is whether you’re on the freeway or in the exam room. It’s just, how do you sit with anger? How do you sort of name and normalize that and not just retreat or become defensive? So responding to emotion, I think is one of the things where if we, as a society, we’re better at that. We would be able to have so many more conversations.

Dr. Anthony Orsini (37m 3s):
Yes. And my goodness now it’s more important than ever as a society that we communicate well. And I could say this is an all time low. Absolutely. So communicating. So maybe this podcast will help that a little bit. You spoke about a framework and I just, so the audience knows Karen is going to be with us again for another episode that we’re going to be recording shortly. And Karen is going to talk about her ASCEND Acronym and program for communication. And so I would not miss that one also because this will really, really help you communicate. And boy, do we need communication? Karen there is no one better to talk about this topic.

Dr. Anthony Orsini (37m 44s):
Your incredible, I think that you’ve fulfilled our promise. 10 times fold. You’ve inspired people with your story. You’ve inspired people to really understand how important these end of life conversations are. You’ve given us some really great tips. It’s a life long learning. I’m still learning. You’re still learning. I want to thank you so much. If anyone out there wants to get in touch with Karen, her website is Anticipation habit.com and we’ll have links on the show notes for you. So you can click on that. And if you want to get in touch with Karen it’s Anticipationhabit@gmail.com. And if you like this podcast, if you enjoyed the episode, please go ahead and recommend it to other people.

Dr. Anthony Orsini (38m 25s):
Hit the subscribe button, hit the download and leave a review. It’s very important to leave a review so that we have a guideline to make this better and better. And if you want to learn more about the Orsini Way you can go to The Orsini Way.com or contact me at Dr. Orsini @the Orsini Way.com. But go ahead and hit subscribe. Don’t miss the next episode with Karen. I’m telling you it’s going to be awesome. Dr. Knops is gonna talk about her ASCEND and then you won’t want to miss that. So Karen, thank you so much. And I look forward to our next interview.

Dr. Karen Knops (38m 58s):
Thank you for doing all this.

Dr. Anthony Orsini (39m 1s):
All right. Karen thank you. All right. Well, before we leave, I want to thank you for listening to this episode of Difficult Conversations Lessons I learned as an ICU Physician. I don’t want to thank the Finley project for being in such an amazing organization, please. Everyone who’s listening to this episode, go ahead. Visit the Finley project.org. See the amazing things that are doing. I’ve seen this organization literally saved the lives of others who lost infants. So to find out more, go to the Finley project.org. Thank you. And I will see you again on Tuesday.

Announcer (39m 33s):
If you enjoyed this podcast, please hit the subscribe button and leave a comment and review you. Contact Dr. Orsini and his team, or to suggest guests for a future podcast. Visit us at The Orsini Way.com.

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