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,
“Sharing is sometimes more demanding than giving.”
~Mary Catherine Bateson