A Mother’s Tears: Lessons from the Dying

I am standing at the nurses’ desk watching the cardiac monitor on the patient in room 32 slowly become more and more unstable. The patient’s family members have decided to change the patient’s status to CMO (comfort measures only), which means the goal of care is no longer to recover, but to keep the patient as comfortable as possible. The patient has essentially no chance of recovery and has been on a heroic amount of life support to sustain him, and the family wants the suffering to end for both the patient and themselves, and all care-givers agree that this is an appropriate course of action. A few minutes earlier, the nurse discontinued the vasopressor infusions (powerful medications to maintain blood pressure and heart function), and now the patient has become hypotensive (low blood pressure). As the family gathers around the loved one to say their final goodbyes, the nurse and I keep an eye on the cardiac monitor outside the room. I study the progression: The heart rate becomes fast, then abnormally slow, then the morphology of the waveform starts to change and become more and more unstable until the patient is clearly in cardiac arrest, and then…asystole (no electrical cardiac activity). I take a deep breath, and walk into the room of the patient that is crowded with tearful family members saying goodbye. I do a brief examination as a formality, look at the clock on the wall, and pronounce with finality: “time of death: 10:18pm.” Even the strongest family members who have held their composure burst into sobs, and I quietly express my sympathy and excuse myself to let the family mourn for a few moments without interruption.

***

The experience above is one I have come to know very well since beginning my critical care fellowship this past summer. Before this year, I have had patients expire, but never have I spent so much time with dying patients and their loved ones, as when I came to work full time in the ICU. Someone asked me recently what I had learned during my year spent in the ICU. I told them, that I have refined and expanded my knowledge about the management of critical illness. I have become proficient at supporting the sickest patients in the hospital, and though I still have more to learn, caring for people with life-threatening problems eventually becomes routine. On rounds, we discuss the care of people who are very near death, and one might think emotions run high, but largely, this is very calm and methodical work. The younger doctors report on the status of the patient, and then give their assessment and plan of action to help the patient. The attending either nods in approval, or points out where the resident may be wrong or could improve the plan. I usually stand by and try to keep the troops cheerful, and occasionally offer some bit of insight that I may have.

It actually sounds easy, but there are many aspects of working in the ICU that still challenge me. Perhaps the most difficult job is communicating and building consensus with all the stakeholders: the nurses, the surgeons, the consultants, nutritionists, physical therapists, and most importantly the patients and their families. While many frown at this part of the job, I find it challenging, and this was perhaps the most important part of my education this past year. In particular, the complex communication that is required when patients are dying is crucial, because these cases are the ones where consensus can be very difficult to reach.

You might think that it’s the families that have a hard time letting go of their loved ones when they are near death, but actually families usually surprise me. Even though, they hope for their loved one to survive and recover, they usually can sense when the person is suffering needlessly. After all, the families know that patient better than the nurses and doctors ever could, and often are the ones to initiate conversations like “I don’t think he would want any of this done to him”. I find that the families usually have the patient’s best interest in mind, and they are usually willing to let go of the patient when they think it is the right thing. Family problems occasionally arise when two people in the family who don’t get along use the sickness as an opportunity to try to hurt one another by being resistant to what the other family member wants for their loved one. I find this kind of behavior rare though, and people are usually able to rise above their differences when their loved one lay so close to death. Some families are fortunate to have a physician or nurse in the family who really understands the clinical situation, but most don’t. For the most part, families depend on the professional care-givers to help them know when things are hopeless.

Communicating with families and explaining a poor prognosis in a sensitive manner is difficult, but usually it is not the hardest part of end-of-life decision-making and communication. The real challenge is reaching consensus with the clinicians. Every health care provider involved in caring for the patient may have a different idea of when the “line has been crossed”, and care has become futile and less than compassionate. The main three groups of clinical stakeholders involved in this determination are the ICU nurses, the ICU doctors, and the surgeons or the doctors who have admitted their patient to the ICU hoping that we can get them through their post-traumatic or post-operative critical illness. Usually the nurses are the first to question whether our efforts are going too far. The ICU physicians are usually somewhere in the middle, and the surgeons are often the last to be willing to accept that the patient does not have a chance at a meaningful recovery. Then within each of these groups is even still greater individual variability. How health care providers view end-of-life decision-making is largely based on values of the individual that are very personal. There are surgeons who NEVER want to make the patients “comfort measures only”, and there are those who are very reasonable. Then there are nurses who never give up hope that their patients can recover, and some who want to discuss code-status and goals of care within minutes of the patient’s arrival to the unit. Trying to come to a unified way to present the family with what we really believe is best for the patient can be nearly impossible with so much variability, but if all parties are open to discussion, then at least there is the potential for consensus. The family usually needs some guidance from the clinicians and it is much easier for the family to make decisions if they get a consistent, unified update on how their loved one is doing…versus conflicting reports about the prognosis. When we are able to provide this clear guidance, it makes a difficult and painful situation for the family a little easier to endure. Of course, nothing can completely dull the pain of having to make decisions for a dying loved one, but when we sensitively communicate our expertise to the patient families, we can minimize that pain and suffering for the family.

***

Part of being a physician requires dealing with other peoples suffering on a daily basis. In particular for a trauma surgeon and critical care physician, there will be daily exposure to the pain of my patients and the grief of my patients’ family members. Watching other people suffer is not easy. Most health care professionals have to develop some amount of detachment from their work to maintain their own personal sanity. I see this often in first responders (police, paramedics, firefighters), who witness so many gruesome sights, that they cannot internalize all of the tragedy, because they would be an emotional wreck. In the hospital however, health care professionals are often caring for patients for weeks and maybe even months, and one cannot help but get somewhat emotionally invested in many of our patients…and I think that is a good thing. In our ICU, I notice that among the doctors, nurses, and other staff, there are different levels of empathy for the suffering of our patients. Some are more quick to become emotionally invested in a patient than others, but all of us (to some degree) try to guard our hearts from getting caught up in the emotional turmoil of a dying patient…if we can avoid it. This is apparent in the care-givers of patients who come in with an exceedingly bad prognosis, like the severely head injured trauma patient who is near brain death on arrival. While we do our jobs as well as we can to try to save these patients, it would be foolish for us to invest ourselves emotionally into a patient that we are almost certain to lose. And while we may say the appropriate things to the family during this difficult time, we are not truly sharing their grief and internalizing their pain…once again…if we can avoid it.

Personally…I feel like I have seen a lot of suffering in my time as a physician. In addition to the heartbreak of seeing people die at Massachusetts General Hospital, a world class medical institution, I have seen some unimaginable things in other parts of the world like post-earthquake Port-au-Prince where the entire city lay in utter ruins and the streets smelled of death. Or like Dadaab, the Somali refugee camp in Eastern Kenya where more than a quarter million people live a miserable existence with almost no hope to change their circumstances.

Having seen so much suffering, one can start to believe that one is“tough” so to speak and can handle the relatively routine suffering and grief that one encounters daily when working in an ICU. While I always try to be sensitive to the families who are suffering and losing a loved one, I usually maintain some emotional distance, which helps me be as objective as possible in medical decision making, and as explained before is protective in the case of patients who have little chance of survival.

I remember one patient in particular. She was approximately 25 years old with a devastating head injury after a motor vehicle accident. We admitted her, and did our best to control the pressure and swelling on her brain, but after a couple of days, it became apparent that we were losing the battle, and we held a family meeting to update the family on how poor the prognosis was. By this time, I had learned all of the correct language to use, and how to explain things gently, but also clearly and honestly, so families can make the most informed decision. The entire time, I had managed to stay in perfect control of my own emotions, as this girl’s mother was going through kleenex after kleenex. The family decided to make the patient CMO (comfort measures only) and withdraw her life support. This was a hard decision, but because our experienced team of doctors, nurses, and social workers had explained everything with such professionalism and sensitivity, the meeting had gone about as well as one could imagine…so much so that something surprising happened. The girl’s mother stood up and demanded to hug each an every one of us for our efforts in caring for her daughter. This was a little unusual, but of course we obliged her given the circumstances. I stood up with open arms, and she embraced me very deeply, and continued to sob into my arms. As I held her and she cried, I felt her warm wet tears roll down her cheek onto my neck. But the tears were not just warm, they were hot…I mean they burned. All of the sudden I was overcome with the magnitude of what grief she was experiencing to be losing a daughter. It was as if those tears transferred some of her suffering to me. And sure enough, my eyes became wet with tears too. There I was thinking I had seen it all, and I could handle stuff like this with distant compassion, but there is something powerful in the human touch, and as this mother’s tears dampened my collar, I realized that no amount of previously witnessed tragedy made this any less of a bitter pill to swallow. A parent losing a child is utterly awful, and one is never too “tough” to experience the pathos of something so universally dreaded.

I am thankful to this patient and mother, and the many other families of patients that taught me so much about what being a doctor really means. The day before my graduation ceremony from my ICU fellowship, I gave bad news to another mother about her sick 21 year-old daughter who I had just operated on. She began to cry uncontrollably, and I did the only thing I know to do which was to hold her and try to support her as she suffered through the waves of grief that were coming over her. This time I was not surprised when some of her pain seemed to grip my heart as well. Even after an entire year of encountering loss, my heart remains tender enough to experience some of the hurt when I see my patients and their loved one suffer. I am thankful for that. And I am thankful for every mother, father, sister, brother, son, and daughter who lost someone in our ICU, because their pain remains my motivation for wanting to do a good job. I am thankful for the lessons these dying patients and their families taught me about not just pathophysiology, but also about the difficulties of end-of-life decision making. I am thankful for the world-class education I received from the nurses, doctors, and social workers in our SICU about how to communicate with families. And finally, I am thankful for those mother’s tears that taught me that even when suffering cannot be alleviated, it can be shared.

Thanks for the lessons,

chad

“Sharing is sometimes more demanding than giving.”

~Mary Catherine Bateson

Enduring the Worst

On Wednesday, January 20, 2010 in the early morning hours, I was sleeping on a mat on the floor in the main room of an apartment in Port-Au Prince. I had arrived the previous night after a long day of travelling from Boston to Haiti, with several stops along the way. I knew I needed my sleep for the work that waited for me the next day to care for patients, so I had been intent on getting some much needed rest. Unfortunately, sleep had alluded me most of the night, due to the humidity, mosquitoes, and a noisy dog that someone had tied next to the apartment, but after hours of tossing and turning, I was finally enjoying a few moments of actual sleep when just at dawn, I experienced an unusual wake up call…another earthquake.

Actually, it was a 6.0 aftershock and was the first strong aftershock to occur since the day of the 7.0 main shock about a week prior. To me, it felt like I was on a boat or an airplane with some turbulence, but in actuality, I was indoors. The aftershock was short-lived (maybe 5 seconds), but everyone in the apartment was soon wide awake wondering what might be next.

Kez, the nurse who lives in the apartment and had been in the first earthquake, told the rest of us (who had just arrived the night before), that it was the strongest aftershock she had felt since the quake. I remained on the floor where I had been asleep, while the others were swirling about with nervous activity. It may have appeared that I was just sleepy and unwilling to start my day, but in actuality I was paralyzed with uncertainty.

Up until that moment, I had been single-minded regarding the mission trip. Thousands of people were suffering, and my skills as a surgeon had the potential to do enormous good in the post-earthquake relief efforts. The decision for me to go was actually very easy. I could certainly put up with some difficult living conditions for a short time, when the potential to help was so great. I had not really considered that my own life might be in peril. But the magnitude of the aftershock had suddenly made it clear that I was in a lot more danger than I had previously believed. My mind began racing: What if the “big one” still has not happened yet? What if a building collapses on me? What if I become one of the many statistics here in Haiti? Was this a big mistake to come here so soon after the earthquake?

***

I had a wide range of emotions that I experienced while I was in Haiti. While I am not proud to say so, one of the emotions that I grappled with was fear. It does not sound very courageous or strong to say that I experienced crippling anxiety during my trip, but I have to admit that it was quite overwhelming at times. After that first morning’s aftershock, there continued to be tremors here and there. Usually, there would be a substantial aftershock at night just as I was trying to lay down and sleep. The earth would suddenly shake for a few seconds, and I would spend the next 6 hours wide awake with my heart racing, wondering if I was going to see the next day. Even if I fell asleep, I had bad dreams. To be honest, it was one of the most difficult things I have ever endured.

But I did endure, and they say those things that don’t kill us make us stronger, and I believe that my fears did just that. By the end of my trip in Haiti, I was able to sleep through the night (somewhat, because I had become exhausted), but also because I eventually realized that my well-being is in God’s hands, and that no amount of worry could really protect me. I had to remember that the same God who had kept me safe from accident and disease for the last 35 years could certainly keep me safe in Haiti. After all, “who can add a single hour to one’s life by worrying?” (Mat 6:27)

I also re-learned a lesson that I had learned long ago about dealing with difficult situations. One of the best ways to alleviate anxiety, loss, and other painful emotions is to serve other people. To some, this seems counter-intuitive…to think that the way to deal with our own discomfort is to try to alleviate someone else’s. But in actuality, when it comes to emotional turmoil, I believe it is the best medicine. As I have said before in this blog: We are all designed to serve one another…to love one another. When we fulfill that purpose, we build up the emotional reserve to handle our own disappointment, anxieties, and fears… Even if you don’t buy that theory, busying oneself in the service of other people is at least a distraction to get one’s mind of their problems, and unlike other distractions (e.g. drinking), the side effects are beneficial.

During the daytime, staying busy was easier. There were patients to assess, operations to perform, medial supplies to sort, drinking water to filter, etc. When I had work to keep myself occupied and busy, I was able to focus on those tasks and my fears moved to the back of my mind. Additionally, the sense of accomplishment seemed to justify the risk I was exposing myself to. Most importantly, seeing how much others were suffering or had already suffered made my own problems seem small in comparison. So many people had lost loved ones, homes, and their health, and needed someone to help them through this difficult time. Seeing the hope that they maintained gave me the resolve to face my own anxiety about my well-being.

I won’t say that I was able to totally master my fears, because I did not. In fact they often got the best of me at night when things were dark and strangely quiet, but I can say that I did not become a slave to my fears. I did not allow them to control me, and prevent me from doing what I had come to do. I was able to endure my anxiety, and ironically it only demonstrated how strong I could be. Being fearless is not strength…facing fear is strength.

Interestingly, when I got the email from my boss saying that I had to return to Boston as soon as possible, I was very conflicted. On the one had, I was relieved that I would soon be returning to the “safety” of the US, but I was guilty that I felt this relief. I knew that many surgeons were arriving and could continue the work (if anything, by the time I left Haiti, their had become too many doctors, and not enough other staff), but I still felt some shame that part of me was so happy to be leaving the stressful circumstances of post-earthquake Haiti.

This week, my hospital conducted a meeting with all of the hospital employees who had returned from Haiti…sort of an informal debriefing. I quickly found that I was not alone in feeling torn about being back in the Boston. Many expressed similar conflicted feelings of relief and guilt. Most desired to return, and felt that the work they had done in Haiti was so much more important than the work they were doing in the States. The other theme of the meeting however was to discuss anxiety and resources to deal with the after-effects of being in such a stressful environment. Several psychiatrists and therapists talked to us to talk to us about the “acute stress response”, and how feelings of anxiety, or for some, feelings of numbness were normal after a traumatic experience, and that the symptoms would likely improve, but if they did not, there were resources to get help. To me it was therapeutic just to hear other people talk about their feelings, and know that I was not alone in how difficult it was to cope with the experiences of the mission trip.

Looking back on the trip, I have no regrets that I went to Haiti when I did. There are certainly still some bad experiences and images that are burned into my mind that I will carry for a long time. But more deeply etched into my heart than the difficult moments, are the amazing moments. The sincere appreciation of the Haitians in the neigborhoods for trying to help. The small victories like alleviating someone’s pain or fixing their physical problem. The sense of accomplishment and teamwork of caring for patients with doctors and nurses from all over the world. And these moments were especially amazing, because they had happened under so much distress.

I too wish to return to Haiti to continue with relief efforts. I am hopeful that some time this spring will be available for that second mission. I suspect things will be calmer by then, and the stressors more predictable by that time, but even if they are not, I have learned that one can endure the most uncomfortable of feelings for a worthwhile reason…and Haiti is definitely worth the while.

Enduringly yours,

chad

“Bear and endure: This sorrow will one day prove to be for your good”

~Ovid

So Much Things to Say

I am on board the Mississippi National Guard, C-17 Military transport jet travelling back to Florida after what was probably the most stressful week of my life. Amidst the stress, it was also perhaps the most amazing week of my life too. As I sit among about 100 passengers, many relief workers such as myself, and the rest are Haitian refugees, I am having difficulty processing everything I just experienced. I saw destruction and death like I had never seen it before, but I also saw resilience and hope unlike I had ever known. At times, I felt overwhelming anxiety and fear, but there were moments of total peace and serenity between the horrific sights and sounds. I’m sure it will take some weeks to really wrap my mind around what I have just seen in Haiti, so expect more posts in the coming days. I have so much that I want to say about my experiences, but I cannot even put it into context to begin to write. One thing is certain though...what I saw in Haiti has changed me, and I will never be the same again. For now, I just want to post the few photos I was able to take (as electricity and opportunities to charge my camera battery were rare). I will leave out the gruesome ones out of respect for the dead and injured.

Forever changed,

chad

“We learn geology the morning after the earthquake.”

~Ralph Waldo Emerson

The charter plane we took from Fort Lauderdale

Me with Patricia of American Airlines and Vanessa of Angel Missions Haiti prior to departure

Beautiful are the feet...

Vanessa and I settle in for the flight in the cabin of the airplane

We had a 15 minute layover in the tiny Bahamas island airport on the way to Haiti

Structural Damage to St Joseph's Home and Vanessa's place (Where we stayed at night)

Me pumping cistern water through the filter for drinking later on

One of the many tent cities that had sprung up all over the city:

We made rounds here, mostly looking at wounds and other minor medical problems

Earthquake Damage

Earthquake Damage

Earthquake Damage

Earthquake Damage

Earthquake Damage

Earthquake Damage:

I know you have seen pictures of the damage on CNN already, but what these photos cannot capture is the extensive and pervasive destruction the earthquake left. Buildings looked like this EVERYWHERE, some entire blocks just gone. And what you can't see is that as you would walk by these buildings, you could smell rotting bodies still trapped inside. CNN has focused on people pulled from the rubble, but this has been only 100 or so people. When you look around, what you really see is how much death this earthquake caused.

Nos Petits Freres et Soeurs (Our Little Brothers and Sisters) Haiti Hospital

This pediatric hospital had been temporarily converted to a general hospital, and we were able do the most surgery here. Mostly I did wound debridement, burn care, and amputations.

Courtyard of the Little Hospital

Patients overflowed from the hospital's wards into the grounds in tents and make-shift wards

I think this was a consent form, but my french is rusty...

Even people with homes that were standing were reluctant to sleep in doors fearing more aftershocks, and many were sleeping outside on the streets.

This was suppose to be the new Angel Missions Surgi-Center, but most of the new surgical equipment was on the 3rd floor stuck under that collapsed ceiling.

I rumaged around the first two floors to find enough supplies to help with the clinic/infirmary that Joanne eventually set up at the site

I had to leave earlier than planned due to some unforseen repercussins of me leaving Boston so suddenly. This is the military C-17 jet that took us home (A little faster than on the way in)

This is the Mississippi Air National Guard C-17 transporter. Previously, I have not been a fan of Mississippi, but my feelings changed drastically today.

Boarding the plane at Port Au Prince airport

Something interesting happened when we boarded. Most of the relief workers elected to sit on the floor, and gave the seats to Haitian refugees. It was a spontaneous, but beautiful moment.

Me and another surgeon from San Diego ready to fly home

Beautiful are the feet...okay maybe smelly are the feet after wearing these boots for close to a week

Arrival in Orlando around sunset: God Bless America!