Stories from the ICU: Minimally Acceptable Quality of Life

One of the situations where I often found myself called into in the ICU was when families were attempting to make difficult decisions about the future for their loved ones who were under our care. These were nearly always dire decisions. Patients were on life support, which works for awhile, but the longer someone has a ventilator or trach, the greater the likelihood of infection or hospital acquired illnesses. Sepsis was a constant and deadly threat. Nurses would balance the patient's body processes for them, with dialysis and mineral replacement and dietitians would balance artificial nutrition and fluids. Sometimes there is a possibility of recovery, often there is not.

One of the questions that is asked by critical care physicians or palliative care physicians is, "What is your loved one's minimally acceptable quality of life?"

It is not really enough to talk about "being alive."  Because "life" can mean barely hanging onto a grasp of this world. It can mean being in a coma, tethered to a ventilator and catheter and central lines, with machines and nursing staff taking care of your body's every function. This is enough for some families. Just the possibility of knowing that their loved one is still present with them.

But quality of life is different than being alive. We talk about being able to communicate and recognize our loved ones and care for ourselves and engage in meaningful activity. I spend a lot of time thinking about what meaningful quality of life would be for me. I would want to be able to communicate (whether or not that involves speaking or another tool for communication) and recognize my spouse and my family. I would want to be able to engage in the meaningful activities that I enjoy such as reading and writing.

For some people, minimally acceptable quality of life includes such things as maintaining hearing and sight, the ability to walk, and being able to complete all their own activities of daily living. These things are not at the top of my list, because I know people who are able to thrive even with these limitations.

But minimally acceptable quality of life varies for everyone. And it is the role of the chaplain in these conversations to be able to help families name this. We would gather our ICU families into a conference room, with social workers and nursing staff and chaplains and physicians present. The doctors would present the medical situation, and other team members would share insights. The family could ask questions, and then attempt to make the decisions that no one ever hopes to make.

Sometime last year (details deliberately obscured) I found myself in one of these family conferences. The patient had suffered a catastrophic brain injury as a result of an extreme sport. The neurologist was mostly confident that the patient would survive, but with significant impairments that would require ongoing medical support and would never live independently.

The family decided to proceed with transitioning to comfort care. To extubate, and remove all medications and interventions except morphine for pain relief. This decision was not made lightly, because this patient had another family member who had experienced a traumatic brain injury and had made it known that they would not wish to be kept alive in that situation.

This was a point of friction with doctors, who often had to persuade families to transition to comfort care after stopping non-beneficial medical interventions. The family's idea of minimally acceptable quality of life was different than that of the medical team. But in the end, it is the patient's decision (or in the absence of decision-making capabilities, the proxy decision maker). And as the chaplain, I accompanied this family through the worst days of their life, made a little bit easier because the patient had made their wishes known about their minimally acceptable quality of life.

It is my prayer that everyone who reads this post would think through what "life" means to them, and share that with family members and close friends. Don't make your family guess. Give them the gift of sharing your wishes.

Stories from the ICU: I see your suffering and I am not repulsed by it

As I unwind from my CPE residency, I have decided to share some of the amazing stories from my time as an ICU chaplain.  These are my best attempts to capture some of the fleeting and complex moments of those sacred hours.

This story comes from a night shift and from a call to the Cardiac ICU. I arrived at work to utter chaos. A patient had come into the Emergency Department in cardiac arrest. He coded twice in the ED, and much of the day chaplain and social worker's work that afternoon had been to find his family. There was one daughter who was camping in the mountains and unreachable by phone. Upon my arrival, the patient's son and daughter in law had been located and were at the hospital, although not in the patient's room.  The patient coded again and the physician begged me to locate the family. The patient was dying in spite of our best resuscitation efforts and chest compressions and intubation were non-beneficial. We tried never to have a patient die with a tube in their throat, it was distressing and traumatic for the family and uncomfortable for the patient. I tore off running to the family waiting area. Then the cafeteria. Then the chapel. And the parking lot. The family was ultimately located in their car outside the ED by an emergency nurse. We jogged to the CICU to what had to have been a horrible scene. Sometime in the course of the code blue, the patient had started bleeding and blood surrounded him on the bed, on the sheets and pillow and the floor. To someone accustomed to such things, it simply means putting on PPE, including plastic booties, a gown and gloves. So I did so. But to a family who belonged to that patient in the bed, it was devastating. The family was unable to bring themselves to enter the room.

The physician spoke with them in the hall and indicated that the patient was dying. The physician requested to extubate the patient and stop all heroic measures, as they were non-beneficial. The family gave consent. I stood with them outside the room as the patient's RN and respiratory therapist removed the tube. I warned them of the disturbing sound of suction. I stood with them in their suffering.

The patient began agonal breathing almost immediately. He was alone in the room and I went to his bedside. The family was frozen in the doorway.

Holding the patient's hand, I turned to them, saying, "He is dying. I will stay here with him and hold his hand so he is not alone. You do not have to come in if you do not want to, I know this is not how you want to see your father.  But I will stay here."

After a few minutes, the patient's son came to the bedside. He still was not touching his father. I said, "The breathing pattern that you hear is common for someone who is dying. He is not in pain, it is reflexive. Eventually there will be longer and longer pauses between breaths and then there will be a point where he will not take another breath."

The patient's son said, "Is it okay if I touch him?"

I responded, "Absolutely."  We each held one of the patient's hands, looking at his face, watching his chest rise ever so slightly. Until he was not breathing anymore.

Chaplaincy is standing in suffering. It is seeing suffering and not being repulsed by it. It is seeing the love and connection between father and son. It is about marking sacred moments. It is about bearing witness to love. For the opportunity to stand in a blood-spattered room and hold an elderly man's hand as he passed from this world to the next. To bear witness to suffering and not walk away. This is chaplaincy.