Grief Connects Us

by Joseph D. Stern

  On our return, we were attempting to negotiate our way past security when I recognized Dr. Lekovic (I had seen his picture on the UCLA website) striding confidently across the lobby. I intercepted him and we introduced ourselves. He seemed to soften when I explained that I was also a neurosurgeon. He was pleased with how the surgery had gone but said that Pat remained critically ill. I explained that, while we wanted to give Pat every possible chance to recover, we did not want him to have a tracheostomy, PEG, or shunt placed unless he was clearly improving, as he had indicated he did not want to end up in a nursing home or remain in a persistent vegetative state.

  Taken aback, Dr. Lekovic explained that there was still a good chance that Pat would recover and that they were going to do everything they could for at least the next one to two weeks. If, after that, he did not improve and regain consciousness, the surgeon agreed that we should not allow a tracheostomy to be placed, and at that point, we would draw a line and discontinue treatment. Initially, Dr. Lekovic seemed quite nervous about this line of thinking and expressed optimism that Pat might recover, but in the space of this brief but important conversation, he explained the decisions we (Joe, Deanna, and I) would need to make and the timing for making them, including the two-week limit for a temporary breathing tube before a tracheostomy would need to be performed.

  MONDAY

  The hospital had come to life as we returned to Pat’s bedside the next morning. The Neuro-ICU nursing staff encouraged us to come to ICU rounds and to interact with the medical team. Dr. Blanco was the Neurology Intensive Care attending. Soft-spoken, thoughtful, and kind, he was also patient and informative. He and I spoke the “neuro” language, which I translated to Joe and Deanna, and later to the Whelan and Stern families in hour-long conference calls. We also met with Pat and Victoria’s close friends to review his progress in another conference, this one at Diane’s home. These discussions, followed by explanatory emails, took hours each day over the ensuing week, but they proved essential to helping families and friends come to understand the events that had transpired and what the future held. Without them, everyone would have felt much more in the dark.

  Pat lay in bed, eyes closed, with his head elevated on a pillow. There was a bulky white bandage on his head with some bloody drainage on the right side where Dr. Lekovic and his team had opened Pat’s skull. A slender white plastic EVD tube led from the bottom edge of the dressing, draining pink blood-tinged spinal fluid into a sterile collecting system, while a bundle of multicolored electrical cables, leading to an EEG monitor, emerged from the top. Pat was loosely covered with a hospital gown. His prior chest incision was plainly visible. He had an arterial line in his groin, as well as intravenous lines in both arms and a radial arterial line in his left wrist. He had multiple intravenous drips and monitors in addition to the continuous EEG monitoring, which assessed for possible seizure activity and for electrical signs of wakefulness. There were sequential compression devices on both of his legs to help prevent blood clots from forming. A CT scan and CT angiogram done early in the morning showed no surgical complications and indicated that the aneurysm was no longer filling, evidence that it had been successfully clipped.

  When Dr. Blanco and his team came in, they introduced themselves and examined Pat. Pat did not open his eyes or respond to voice. He did not follow commands. His pupils were minimally reactive. He extended his arms forcefully down and away (extensor posturing) to painful stimulation and withdrew his legs (triple flexion) in response to pain. The latter is a reflex movement, while the former indicates a relatively low level of brain function and is, in itself, a form of reflex movement. The doctors had given Pat no sedation since the surgery, but they felt that his brain activity might still be suppressed by a large dose of pentobarbital, a powerful barbiturate, which had been given at the time of surgery to protect the brain from damage, since they had to temporarily block the blood flow to his brain in order to clip his aneurysm. This long-acting drug takes twelve to twenty-four hours to wear off and leave the system. The EVD seemed to be working well, but the treatment of his hydrocephalus had not appeared to improve his level of consciousness. Dr. Blanco expressed cautious optimism and suggested that with time Pat might improve, saying that for now they would hold off on making comments about his long-term prognosis.

  We went home and reported to the boys, who were interested but did not want a lot of details, as this was clearly more than they were able to deal with. They played video games and mostly stayed in their rooms. Neighbors and friends had once again begun cooking for the family; the refrigerator was stuffed with food. The blue plastic cooler filled with meals was placed on the front porch, as it had been throughout Victoria’s illness. Joe and I attempted to find Pat’s healthcare directives, and Joe contacted Pat’s attorney, who produced a draft document that had not been executed. This draft stated that Victoria was his healthcare power of attorney, but in case of her incapacity, that role passed to my wife and me. We surmised that Pat had not rewritten the document after Victoria’s death. While I had been interjecting opinions and advising the family, it now appeared that I was actually the family member appointed to make medical decisions on Pat’s behalf.

  TUESDAY

  The next morning, we returned to the hospital and again attended rounds. Dr. Blanco and his team examined Pat. There had been no change over the past twenty-four hours apart from some worrisome EEG activity with some slowing of his brain waves, suggestive of brain damage, and some spiking activity, worrisome in that it suggested early seizure-like activity, for which they increased his Levetiracetam (antiseizure medication) dosing. By this point, the barbiturates were out of his system and his hydrocephalus had been treated, with the pressure relieved.

  Pat remained deeply comatose. A cardiologist came to check on Pat and an echocardiogram was performed, showing that his heart was working fine and his mechanical valve was functioning properly.

  WEDNESDAY

  I had planned to fly back to North Carolina later that day. Dr. Blanco kindly came in a half hour before rounds at 7:30 a.m. to review Pat’s situation with us. Pat’s examination had indicated no improvement at all. He still showed no signs of responsiveness and continued to extend his upper extremities and withdraw his legs to pain. His pupils were unchanged, his gaze dysconjugate (eyes crossed, suggesting brain stem damage). He coughed, and gagged to suctioning, but otherwise did not respond to the outside world. Transcranial Doppler tests (an ultrasound probe placed against the scalp can record the velocity of blood flowing through arteries supplying the brain with blood) showed that he was developing vasospasm with increasing velocities of blood flow. Ominously, the basilar artery, which supplies the brain stem, was the artery with the greatest velocities. This was also the location of the greatest amount of hemorrhage on the CT scan obtained at Pat’s initial presentation. Dr. Blanco recommended an angiogram to assess for spasm and possibly to prevent the complications of vasospasm (stroke), with an infusion of calcium channel blockers (verapamil) to counter the irritating effects of the blood on the outside of Pat’s vessels.

  At this point, there was a perceptible change in the outlook of the medical staff. Dr. Blanco stated that Pat’s lack of improvement did not bode well for recovery. He encouraged us to continue to treat him aggressively for the next week but told us to begin to discuss with Pat’s sons the possibility of withdrawing treatment should he not improve significantly. Later, Dr. Lekovic came in to meet with us and said exactly the same things. He told us that Pat had come in with a high-grade subarachnoid hemorrhage, that the treatment had been a Hail Mary pass, and that his lack of improvement did not bode well. He explained the difference between survival and a meaningful recovery.

  Both doctors recommended an MRI, which would show the parts of Pat’s brain that had sustained damage. This might provide useful prognostic information. We all agreed that we would give Pat until the following week to see if he improved, and that I would return to North Carolina later that day and fly back t
o LA the following week to consider withdrawing care and letting Pat die if there had been no improvement over that period. We felt this was most consistent with Pat’s previously expressed wishes.

  Our hearts aching, Joe, Deanna, and I recognized that it was time to tell Nick and Will exactly what was going on. We wanted to do this before I left LA, explaining our thoughts and the plan we were putting in motion. I have told many patients and their families that they are about to die or that their loved one has already died. Yet I have never had a conversation with anyone like the conversation we had with the boys. To lose a parent is agonizing; to lose both parents in separate tragedies is almost unbearable. We want to protect our children from grim realities and from loss, but we cannot always do so.

  All three adults cried as we delivered the news. The boys listened, asked a few questions, and then, surprisingly, thanked us for our honesty. Each of us knew their worlds were irreparably changed. Both boys seemed grown-up well beyond their years. We told them we would see how Pat did each day, but if he didn’t improve, we would honor his wishes and not allow the three additional surgeries of tracheostomy, feeding tube placement, and implantation of a shunt. Nick and Will understood that their father did not want to end up in a nursing home and that this situation was hurting us deeply as well. In the intervening days, we would rejoice at substantive improvement but gird ourselves for its absence.

  Joe drove me to the airport. We discussed the timing of the coming week: instituting a do not resuscitate (DNR) order; the assessment of Pat’s progress; the involvement of palliative care services; inviting family to see Pat once more; deciding on withdrawal of care; having a graveside service. Yet another funeral. While I flew home, Joe went to Pat’s bank with a letter from UCLA explaining Pat’s condition with a request for access to Pat’s safe deposit box in the hope that we would finally be able to locate executed advance directives, trust documents, and wills. Despite Joe’s bearing a letter per Pat’s lawyer’s instructions, the bank denied him access to the box, so he was unable to complete his search for the documents. We decided to use the draft document as the best approximation of Pat’s wishes, while Joe continued to pursue legal avenues to gain access to his safe deposit box.

  I came back to Greensboro to catch up on a week of canceled patients and surgeries, but I participated in Dr. Blanco’s rounds each day by speakerphone, with Joe and Deanna at Pat’s bedside. At seven days after the hemorrhage, Pat remained deeply comatose. He had not improved at all and continued to extend his arms to painful stimulation with no signs of wakefulness. The medical team performed a bedside Doppler ultrasound exam that showed Pat was showering emboli, or blood clots, from his mechanical heart valve into his cerebral circulation. These would likely cause multiple small strokes but could also cause a massive one, so they started him on heparin, a blood thinner, through his IV to try to prevent this from occurring.

  The next day, Pat’s EEG showed some worrisome slowing over the right hemisphere, so they repeated an MRI of his brain, looking for a new stroke or hemorrhage. Dr. Blanco expressed complete agreement with continuing full support until the following Wednesday, but he also agreed that if there were no improvement, we would withdraw support Thursday evening.

  There was a plan in place for a visitation, followed by a memorial service that Saturday at Woodlawn Cemetery in Santa Monica, where Victoria had a graveside burial service almost two years earlier. Notifications were sent, along with medical updates, to family members. Friends of the family offered their homes for out-of-town guests, and everyone booked flights to LA. As the week progressed, Pat’s condition had not improved at all, so by Wednesday morning we were all preparing for the withdrawal of treatment.

  Joe and Deanna spoke to the boys about these arrangements and asked for their opinions: burial or cremation; open or closed casket; flowers; a gathering afterward with families and friends. Nick and Will had strong opinions and appreciated being involved in the decisions. Afterward, they went over legal concepts of wills, trusts, guardianship, advance directives, and healthcare power of attorney, seeming to absorb the concepts readily. The boys decided on a memorial service immediately following Pat’s funeral. Uncannily, the only venue the family could come up with on such short notice was Shutters on the Beach, which is next door to Casa del Mar, where Victoria’s memorial service was held a few weeks after her burial.

  Coming directly to the hospital from the airport, I met Joe and Deanna in the ICU that Wednesday morning. Dr. Vespa had replaced Dr. Blanco in the ICU. He came to Pat’s bedside to speak with us. Initially, out of deference to Pat, we had conducted our discussions in the hall, away from his bed. Now, we all remained in his room. Dr. Vespa showed us Pat’s MRI. He spoke of the damage to Pat’s brain stem and cerebellum seen on his scan and of his lack of clinical improvement. We had an awkward discussion about the possible extent to which Pat could recover. Dr. Vespa indicated that he would almost certainly remain in a nursing home for eight-plus months, but that with improvement, it was possible that he could eventually return home—though at a minimum, he would be paralyzed on the left side of his body and he would be unlikely ever to be able to completely care for himself or regain his independence. Although still quite bleak, this assessment was more optimistic than those provided by all the other treating physicians, an incongruity we found disquieting.

  Earlier, I had asked Dr. Vespa what he would do if he were in Pat’s position. He said he likely would want to be taken off life support himself. Today, however, he seemed to be cautiously offering us hope. But I pressed him. Pat had not improved at all since his admission, and his neurologic exam, despite all the tests and treatments, had not changed at all. Dr. Vespa agreed. I explained to Joe and Deanna that there was a bell-shaped curve of possible outcomes for Pat. Dr. Vespa told us that he was offering the best possible outcome, which was extremely unlikely. The most likely outcome was that Pat would never regain consciousness and would succumb to a secondary illness, such as a pneumonia, urinary tract infection, or blood clot to his lungs.

  With that, we resolved to hold to our plan to invite Pat’s family to see him once more and then to withdraw care the following evening at 6:00 p.m.

  On Wednesday evening, the families arrived in LA and we all met for dinner at the Whelan house. I spoke with Barb, Pat’s youngest sister. She and her husband, Dan were the designated legal guardians for Nick and Will. I explained the medical situation once again and answered many questions. Some family members wanted to see Pat once more while he was alive, but they wished to leave before the ventilator was withdrawn. Others wanted to be there for Pat’s passing. Pat’s father, Tom, a devout Catholic, and I spoke about cremation and the withdrawal of treatment and whether this was acceptable to him and to the church (it was). Joe, Deanna, Barb, and I planned the coming day. Nick wanted to see his father once more. Will did not wish to return to the hospital. Joe, Deanna, and Barb wanted to see Pat once more but wished to leave before Pat died. I volunteered to stay for Pat’s death.

  THURSDAY

  The four of us attended morning rounds for the last time (there was no improvement in Pat’s condition) and then had a two-hour meeting in the ICU conference room with the palliative care and hospice teams. Dr. Pietras asked me to summarize my understanding of the situation and our goals. He was accompanied by his team, which included the Neuro-ICU fellow, the palliative care fellow, the social worker, and the hospice social worker. They listened attentively as I articulated our understanding of the medical and social concerns, and our interpretation of Pat’s wishes and how we wished to honor them. Joe, Deanna, and Barb were also present. I tried to synthesize the medical and the personal, giving voice to the religious concerns of some family members and expressing consideration for Pat and the boys, who did not ascribe to any organized religion, as well as to the fact that the boys were about to lose their last parent. I tried to strike a balance between these considerations. The team was supportive and agreed with our plan. Acting with healthcare powe
r of attorney, I signed a stack of documents.

  We spoke of the mechanics of removing support and of the desire to maintain comfort but not to hasten death. Dr. Pietras warned us that Pat might not die right away but could linger for days to weeks before he died, saying that there was an outside chance he might have to be transferred to a nursing home if he lingered. The family members looked at each other with new anxiety and dread. The funeral had already been planned for Saturday. We agreed that the service would proceed and become a celebration of Pat’s life if, uncomfortably, he remained alive. I asked the medical team to clamp off his EVD that morning and to give him morphine to ensure he remained comfortable. The team agreed to both of these requests.

  We went back to the Whelan house for a break, returning to the hospital at 5:00 p.m. Several family members, including Barb and Nick, had tearful private visits with Pat, after which they went home. Pat’s parents, Julie and Tom, and his older brothers, Tom and Tim, along with their families, stayed. The chaplain and a priest visited and they prayed together. The family took Communion. Rachel, Pat’s nurse, had prepared and positioned Pat before everyone arrived. She had started a morphine drip at a low rate of infusion several hours earlier. At 6:00 p.m., she gave some intravenous medications to decrease Pat’s oral secretions. We gathered in a circle around Pat’s bedside, holding hands with each other and holding onto Pat. Everyone was weeping. At 6:15, the respiratory therapists came and, after suctioning Pat’s mouth, removed his breathing tube. Several of the family members who had stepped out while the breathing tube was removed now returned to Pat’s bedside, re-forming the circle.