A Lighthouse in a Storm

Just a little bit about the title. As you’ll read in one of the passages below, there was a moment in a family meeting with the palliative care team of almost overwhelming madness. Multiple family members speaking, children running back and forth, many other family members crying. I was amazed at Dr. K’s ability to get control of the situation and bring a sense of calm. As we met with a smaller subset of the family in another room, separate from the chaos, I just thought of a lighthouse. It made sense to me. Sailors on a stormy sea trying to navigate their ship to safety. “We’ve never had to do this before,” said one of the granddaughters in the meeting. A family whose world was turned upside down in an instant, caught in a freak storm, looking for guidance in the chaos. And I sat back and thought, “wow, this is what Dr. K is right now, a lighthouse in a storm.”

Honestly, death scares me. I’d like to think there is an afterlife or reincarnation…I’d like to believe I go on. But a part of me really thinks this is it. I exist at this moment, but at some moment I will not. I have trouble reconciling this thought.

I’m nearing the end of my 4th year in medical school. I’ve helped take care of many patients in that time. One of my strengths, I believe, is the emotional connection I can make with patients very quickly. But this ability to connect emotionally, paired with my own feelings about death, give me great doubts about my own ability to serve as a physician when death is near. In fact, the question terrifies me. Will I be able to deliver bad news? Lead end of life discussions? How will I keep my emotions in check?

I wanted to get at least some experience with dying patients before I went out into residency and beyond. The truth of the matter is, at least in my experience, medical students get very little training in and exposure to the art of delivering bad news and having end of life discussions. Personally, I did not encounter a single patient death until almost a third of the way through my 4th year. I counted myself fortunate of that fact and even said as much to a family doctor during a family medicine rotation at Abington Memorial Hospital. He was taken aback and relayed his belief that participating in an end of life discussion is one of the more fulfilling and meaningful experiences you can have as a physician. I wasn’t so sure. I decided to find out.

“Mr. Johnson, can you blink your eyes for me?” — Dr. H
I need to go back in time for one moment. My first experience with a dying patient came before I applied to medical school. I had been shadowing a neighbor, an oncologist, Dr. H., at Pennsylvania Hospital. Most days I followed him on rounds, and they were pretty routine, even boring, because I never could understand what they were discussing. But one Friday, we started in the ICU. He had a patient with AIDS whom he’d been caring for close to 20 years. We stopped outside the room.

“Just a heads-up, this patient isn’t doing too well and is intubated,” Dr. H said, and handed me a yellow gown and surgical mask, standard procedure to prevent spread of infection in the ICU. Mr. Johnson was in bed, on a ventilator. His partner of 15 years, Jim, was next to him.

I said hello to Jim, I didn’t approach Mr. Johnson to say hello. I wasn’t sure that I should say hello. I found a corner of the room to stand in and observe. “Mr. Johnson, can you blink your eyes for me?” Dr. H had begun his bedside examination. He continued, “One blink will be ‘yes’ and two blinks will be ‘no.’ Got it?” Mr. Johnson responded, One blink, yes. “Good,” said Dr. H. “Do you know where are you are right now? One blink. “Good. Are you at Jefferson Hospital?” Two blinks. ”Are you at Pennsylvania Hospital?” One blink. Good.” Dr. H’s questions continued for another minute or so, trying to assess Mr. Johnson’s mental status.

“Mr. Johnson, I’ve been your doctor for a long time now and we’ve had many conversations regarding the course of your disease. Do you remember some of our more recent conversations…about how the end will be sooner rather than later?” One blink.

I stood perfectly still, I’m not even sure I was breathing. My heart was beating through my chest.

“I’m so sorry to say,” Dr. H. continued, “but I think we’ve come upon the end. It will likely happen this weekend.” Extended pause. “Do you understand what I’ve told you?” One blink.

The doctor’s delivery was calm and gentle. He was as straightforward as could be without detaching himself from the situation. He never took his eyes from Mr. Johnson’s. I’m sure I saw a tears dribbling down Mr. Johnson’s cheek, maybe not, I’m not entirely sure. I know for me, I couldn’t wait to get out of that room. It was such an intimate moment, and in a strange sense I felt like an intruder. I wonder if this is what an Abington doc had meant, during one of my clinical rotations, when he described end of life discussions as being “meaningful” and one of the most satisfying parts of his job. I looked at Mr. Johnson’s partner, Jim. His look wasn’t one of sadness. Rather, I think he was appreciative at the tenderness of D. H’s delivery to his partner. I’m sure he knew the end was near even before the news was delivered. He had prepared himself for the punch and took it without a flinch. I myself had not. The conversation eventually wrapped up. Dr. H. and I left the room.

“Any questions, Bob?” Dr. H. asked me. I replied, “I have to say, I wasn’t expecting that.” It honestly never occurred to me, before this experience, that I might someday have to have conversations like this with a patient if I were to pursue medicine. I don’t believe that it frightened me to participate in a conversation like this. I was more concerned with HOW to have the conversation, how to deliver that type of news, how to carry myself. I wanted to know if Dr. H had always been able to do it as well as what I had just seen. I asked, “Did you learn how to do that, or was that something that just came naturally to you?”

He replied, “Well, really it comes with experience, each patient/situation is different, but you learn what works and what doesn’t along the way.” He then told me a quick story about a fellow resident who, during rounds, had relayed to the team the end of life conversation he had with a patient. “I told him to get his affairs in order because he really did not have much time left,” said the resident. To this, the attending physician replied, “Leave. I can’t believe you talked to the patient without first consulting with me. Leave now. I am going to the board and your residency in this program will be terminated.” The resident left in utter shock with tears beginning to gather in his eyes. After the resident had left the floor, the attending pointed at Dr. H, “Go get him and bring him back.” When the resident returned the attending physician said, “The way you delivered the news to that patient is exactly what I just did to you. It hurt a lot didn’t it?” Dr. H said it was a lesson for them all and one he never forgot. So, no, he wasn’t an expert in end of life discussions early on in his career. He learned how to do it. How to soften the blow. It made me feel much better that although there would probably be growing pains, I would learn how to as well.

My first day with the palliative care team included a trip to the BICU, the Burn Unit. A patient, B.G., with a long history of drug abuse and lung disease had burned his face because of smoking while using his home oxygen. Doctors had unsuccessfully attempted to intubate him. This was attributed to numerous prior intubations that resulted in scar tissue forming. Eventually they were able to intubate, however, a tracheostomy would be necessary if there was hope for recovery. As mentioned before, he also had an extensive history of lung disease, complicating his course.

The team met with BG’s longtime friend, Mark. They grew up in the same neighborhood. Mark was tall and appeared to be in decent shape. He had white slicked-back hair and mustache; he had the look of a retired cop. Mark, along with the team, went into a private room that was quiet and nicely lit by the mid-afternoon sun.

The conversation began with Dr. K, the palliative care physician, asking, “Mark, can you tell us what your understanding of the situation is?” Mark understood BG was running out of chances. “Nine lives,” he said at one point. “Live fast, die young, leave a good-looking corpse,” Mark laughed at the expression he and his friend would often share. They had both been drug addicts; Mark eventually recovered, B.G. never would. Mark remained very close to B.G. and became B.G.’s Power of Attorney; he could make decisions on B.G.’s behalf. Dr. K asked if B.G. would want a tracheostomy to help him breathe. “He’ll be angry; he needs prayers more than anything.” Mark said. “And this is why we wanted to talk with you. You’re his voice.” Dr. K replied with a smile.

The palliative care doctors were always forthright with information and expectations. It’s necessary to be realistic, but not entirely extinguish hope. After all, B.G. had recovered from things like this before. “This is why I want you guys,” said Mark, “because I’m not sure. I depend on you guys for the facts.” I could sense the relief in Mark’s voice that there was a support system in place to help him make decisions. I was surprised by how little the palliative care team spoke. It was almost like they knew instinctually when it was time to speak and when it was time to be quiet.

One of the more important things I learned on this meeting — guide someone to an answer, don’t direct. I believe there’s a difference. I understood why the palliative care team members spoke so little. Let the decision makers talk, let them work it out, verbalize their thoughts. Praise them. “You are a really good friend.” Dr. K must have said it a dozen times. Reassure them. Dr. K would say, “Ultimately his body is making the decisions.” The feeling I got on this meeting and subsequent meetings with different groups is that the decision makers may see themselves as a firing squad member, an executioner. I don’t know if this is true or not, but I’ve read before that one member of a firing squad is given a blank bullet but none of the members know who actually has it. So, in their minds, they all have it. I think it’s supposed to lessen the burden of being an executioner. I believe Dr. K was providing Mark with the blank.

The next conference I attended was really the type I had originally feared. This was a tragic story of a couple in the BICU. Their house caught fire late at night. The husband was trying to carry out his partner and, ultimately, dropped his partner as the stairs gave way. Neither made it out. At the time of the meeting they had already been pronounced brain dead secondary to smoke inhalation.

When we stepped off the elevator towards the BICU it was impossible to ignore the amount of people in the hallway crying and hugging. It was clear this was the family of the two victims. We walked past them into the unit to discuss the plan of action with the ICU doctors. “It seems some of them understand the situation and others are in denial,” said one of the ICU doctors. He tapped his pen on the desk and looked at Dr. K, and you could sense his frustration with the situation.

I asked Dr. K as we were walking to meet with the family, “In situations like this, is it necessary to reinforce the ‘finality’ of it? To help them understand.” Dr. K replied, “Possibly. It’s important first to see exactly what their understanding is and go from there. It can be tough though, when they go to visit the patient, I mean, they can see the heart monitor and such.”

I hadn’t considered that. From my perspective, the bells and whistles of a patient’s room largely become an afterthought when you’re around it so often. I don’t really think twice about the beeping and numbers on the screen unless they’re problematic. To a patient’s family though, that beep of the heart monitor means life, the fact that the machines are even on means life; even in death. I could see why someone would have difficulty understanding that their loved one was dead when the visual and audio cues paint a different picture, when the heart still beats.

As we made our way to the family I could tell that this would probably be a difficult meeting. We stepped into the waiting room navigating crying and running children as cellphones rang, conversations escalated and yelling into the hall for everyone to come in. Like a dinner bell. The scene was, in a word, chaos. I began to sweat almost immediately. First, it was hot in that room. Second, how would we (Dr. K) ever get control of this scene to have a productive conversation? It’s nice to have a calming presence like Dr. K around, a lighthouse in a storm, guiding ships in turmoil through a rogue sea. She didn’t yell, she never even raised her voice. She sat down in a chair and introduced herself and asked everyone their names. She wrote down every relationship and name of the adults in the group, being sure not to skip anyone. It had to be close to 20 people, if not more. The room never really quieted down, but enough order was introduced so that the meeting could proceed.

I learned a lot from just this meeting. Introduction is key. Dr. K simply walked up and introduced herself like she would any other patient. However, it was just the way she went about it that conveyed a sense of “this person is here to help.” I think she made it clear she wasn’t there to talk at people, but to listen. We identified the core family members and went into another room to have a more intimate discussion. Thankfully this meeting was calm and quiet.

Another important thing I learned — it’s necessary, and we say this all the time in medicine but don’t always practice it — to know what the family understands. “Where are you guys (with your understanding) right now?” Dr. K asked the family. “You explain to me what you’ve been told.” Dr. K was referring to the initial report that many of the family members were in denial. “They’ve been declared dead and we have 24 hours to be with them,” replied a granddaughter of one of the victims.” She was one of the more vocal members. “We understand the death; we just want to be able to say goodbye.” It seems there was misunderstanding on both sides. The ICU team believed the family wanted to keep the deceased alive for another day or two because they were in denial. The family accepted the death but believed the 24-hour deadline for family to arrive was final and were worried that one sibling wouldn’t arrive in time. Sometimes it’s necessary to be a mediator and ensure everyone understands the situation.

I think in the short time I spent with the palliative care team, my confidence in my ability to perform end of life discussions grew. Can I do this, deliver bad news? Yes, I can. Will I be good at it? At first, probably not. How will I keep my emotions under control? As Dr. K told me, “You can’t be devoid of emotions, but it is necessary to keep your emotions in check. Don’t be more emotional than the family.”

The emotional aspect of end of life discussions comes with the territory. I’m actually glad I can be emotional and empathetic in these situations. I honestly believe it helps better connect with the family. Will my own hang-ups with death impact my ability to do this? My hang-ups about death are just that — mine. Sitting in on these meetings with the palliative care team made me realize, “This really in isn’t about you at all.” Regardless of what I think, in that moment, with that family and patient it’s all about them. If they want to believe in reincarnation, heaven, hell, or nothing, my role is to support.