There's so much so many things that people can do that make a huge difference in the way that you as a patient can try to help yourself mentally and emotionally and I was always grateful for that. That's why I say so often to people, it's not only what you say, it's how you say it..
Nancy Michaels from NancyMichaels.com shares her experience as a patient 13 years ago.
It was 13 years ago in May that I became suddenly very sick I knew something was really wrong with me. I just wasn't exactly sure what. I had been to the doctor several times and I finally was coming off getting home from a speaking engagement. I was flying back and I realized that I wasn't even able to walk off the plane. I was that sick and I called a friend of mine and she came over to drive me to what was my local ER because I was afraid actually to go to a Boston ER. I was petrified that I wouldn't be seen that night and my local ER had seen me several times that previous two weeks. When I arrived at the hospital they saw me immediately and I think it was very early the next morning, I was taken by ambulance to Beth Israel Deaconess Medical Center to their ICU department and it was within a few days of that that I realized that I was in complete organ failure and I would need a liver transplant.
I remember finding out, I think I arrived there Sunday morning and by Wednesday I was in a medicated coma and they almost took me off the list to receive the transplant because they thought I wouldn't make it through the surgery. I was so sick, fortunately they decided to go ahead with the surgery. I believe that was that doing, that my current liver doctor really making a case for allowing me to get that organ because of my age and because of my relative health prior to being sick. I was fortunate enough to have it, it was a non-compatible blood type organ from a young woman who had died in a car accident the night before my transplant. She had a non-compatible blood type organ so I didn’t have to go through plasmapheresis to change or allow my body to be able to accept her organ. During the surgery though I died twice, the second time was more than two minutes and they actually thought that I might not be the same cognitively because I had been without oxygen for so long.
Fortunately though I did wake up on July 17th at 7:13 a.m. and realized I had a memory of what had happened and I was just trying to really put the pieces together. What I realized when I woke up or very shortly after was that I wasn't able to speak because I was trach and that was one of the hardest parts about being in the ICU wanting to ask so many questions and not being able to really have a voice to be able to ask those questions I had. They were weaning me off that respirator for about a month before I could actually speak to someone and then I was transferred to rehab, for six weeks and rehab is no fun. I ended up being readmitted back to Beth Israel after the six weeks of rehab and the three months in ICU. My diagnosis then was a failure to thrive diagnosis because I just wasn't getting better and I didn't realize until later that a failure to thrive diagnosis is really an end-of-life kind of diagnosis or diagnosis you'd give to a preemie.
I was not doing well, I was there for another six weeks, so all together I was hospitalized for about six months and then finally after being discharged from the transplant unit which is where I ended up being. I returned another 11 times for anywhere from 2 to 11 nights for various complications. I had aspergillus in my lungs, I had two rejection episodes. I had high potassium, I had a lot of complications, I had spots in my lungs that they couldn't figure out what was happening. It was a complete year really of being hospitalized.
An ICU Patient & Motherhood
In the meantime, my kids were very young, I hadn't seen them in months. My youngest daughter was so afraid, she was only six at the time that I didn't see her for almost a year because she was just so afraid and part of her fear was that I had brain surgery while I was in a coma, so a part of my head was shaved. Eventually I did wear a wig and it was the only way that she would really see me, is if I had the wig on even when I was sleeping. I also had to have the feeding tube removed because that was another thing that was very upsetting to her.
So, I did have the surgery to have it put in my stomach but it was just a very trying time and I'm very grateful for the medical care that I did get and there were many things that went really well, some things that probably could have been improved upon but ultimately my outcome was a good one and I'm very grateful for that. I think it took me about ten years to really process what had happened but for the past three years I have been working and speaking to health care professionals about how to be better and more effectively communicators with patients and family members. I am a big believer that what we think and feel really can affect how we can heal ourselves.
The subtitle is Seven Communication Practices to Improve Patient and Family Experience. I really wrote it based on my own experience not only as a patient but also hearing my family speak about the two months when I was in a coma, the things that had gone on and again things that were really positive and things that probably could be improved upon. There are some great examples of nurses that did that really went above and beyond the call of duty, I just spoke recently to the ICU staff at Beth Israel Deaconess Medical Center where I was treated and told them about a story about one of my nurse’s Frank, who was the first person I actually met the day that I entered ICU. I remember he commented on my manicure and pedicure and asked what it was called and I told him it was a french manicure and pedicure. He said well you obviously take good care of yourself, so if you take good care of yourself, I am going to take great care of you and I really believed him. He was really such an important person to me while I was there because he really saw beyond my illness and really saw me as a human being and I was incredibly grateful for that.
I remember later - after waking up from the coma, I couldn't speak, so I was mouthing out that I wanted to go outside and I was told that I was too immune suppressed I couldn't go outside and I never forget him coming in one day early to his shift to take me for a CT scan. At the end of that he waited for me and he took me out. I was going through a hallway that I didn't recognize was in the basement and I just remember seeing these two black double doors that he opened up and he brought me out onto the loading dock at Beth Israel Deaconess Medical Center.
It was an August day, it was gorgeous it was hot and I remember him pushing my gurney into the sunlight and taking the blanket off and just standing there with me for like five minutes, not saying anything and it was one of the most significant things and kindest things I think that anybody had done for me other than saving my life of course. Which I'm grateful for but he really did see the human side of medicine and did something and went out of his way to do something that was really very healing and very helpful to me in my morale. I'm really grateful to him for that. There were so many other great examples, I mean my nurse Erin who is my nurse practitioner, she's been with me from the very beginning and I remember going in with my parents one day and feeling really depressed, I mean I was really down in the dumps and probably hadn't taken a shower in a week and I was sitting in this you know target's sweatsuit.
I had probably worn the same thing for the past week also and my doctor was changing my medication because I had a bad reaction to it and he left the room and I just was completely convinced I was not going to get better and I looked at Erin she was had her back to me at first and I said, Erin will I ever get better and she turned around and she looked at me and I knew that she didn't know what to say that was a sense I got, but she looked right in my eyes and she said yes you will get better.
I really held on to that. I think that words are so important nobody gave me false hope. I mean there was not a lot of encouraging words. When I came out and asked her that question I am so grateful that she did respond that way because I do believe that. I thought if Erin thinks I'll survive, well she must know something that I don't know and I was going to hold on to that. There's so much so many things that people can do that make a huge difference in the way that you as a patient can try to help yourself mentally and emotionally and I was always grateful for that.
That's why I say so often to people, it's not only what you say, it's how you say it, our nonverbal matter a lot to patients too. I mean we can tell when somebody's in a while or people aren't getting along and it causes a lot of stress that's really unnecessary. One of the patient's biggest fears is to think that their team is not getting along, because they're not getting along they're not communicating and that is very scary for a patient or a family member to feel that way.
The Key to Excellent Patient Experience
I think communication really is one of the key reasons or key factors and people's experience in making it a better one than what it might be otherwise. So, what you say, how you say it, the way you say things, your facial expressions, your body movements and gestures really do matter to patients and families. All of these things don't take any more time to learn, it's a skill set like any other. There's not a lot of emphasis on this in medical school, which I think is changing but it's a learned skill like any other and I think people can be trained to do this and do it really effectively.
It will make a big difference in how your patients and those family members or caregivers perceive you as well as the medical facility that you work at. It's really about building trust and credibility. You want to have every opportunity to take advantage of that and continue to build that relationship with people. That's what makes people come back and also talk about you and the great experience that they had with you, even if the outcome isn't always a positive one like in my case.
I've spoken to family members whose relatives have passed away in the hospital but they still speak very highly of their medical team, and it was because in large part the way that they were communicated with compassion, with providing context around why decisions were being made and really being you know very caring in the way that they approach their communication and with those family members as well.
I think regardless of what the outcome is positive or negative, it can still be a positive experience for the people around that patient as well and that in my opinion has more to do with the way that they're communicated with than anything else, especially in a situation where someone doesn't survive. Those are the memories that they're going to have for those staff members who were really caring and showed compassion not only to the patient and their loved one, but also to the family members themselves.
I hope that people who read the book will walk away with a better understanding of why this is important, and from the patient perspective. I think it's easy as a professional to sort of understand that yes that's important of course but unless you have been hospitalized yourself or you have a family member who's been hospitalized, you really don't understand fully the impact of what your action might be on someone until you yourself have gone through it. That's why I think it's so important for patients to speak about this, because I think that there's so much that can be learned from us because we will tell you what our experience was.
Through that knowledge and through that perspective, you're probably better able to see another person's perspective inside of your point of view and I think that goes a long way in being able to determine what their experience was and how that could be improved or how it could be replicated. What could be done that would be almost a protocol or a system for continuing those great practices of communication, to improve the patient experience and it really is about engagement, how are you engaging with people and are you doing that in a way that they can connect with you on and can appreciate any of the efforts that you're making.
We obviously want the best person the smartest person in the room to do our surgery to take care of us in that way, but I think that if you have that going for you which I would tend to believe that you do, if we've gotten to the point that we're meeting with you and we've made the decision to have you treat us. The thing that can make that experience so much better is your ability to be a more effective communicator with us and or our family members. That just really solidifies the relationship and provide more effective and positive experience that we have with not only you but with the hospital that you represent. My name is