Grief Connects Us

by Joseph D. Stern

  “Victoria, as we all know, had many talents beyond her extraordinary acting ability. Most of all, she was a connector, a conduit for all of her friends and family. How many of us here have met someone through Victoria who then became an important part of our lives? How many of us who have never even met before today can say, ‘Oh, I know who you are—I’ve heard Victoria talk about you’? With Victoria it was barely one degree of separation. She was always figuring out ways to connect people and was always thinking of others, almost more than she thought of herself: ‘You should read this book,’ ‘You should meet this person,’ ‘You should take this class,’ ‘You should go for that job.’ Toria’s fierce loyalty and devotion to her friends is legendary. And her unwavering faith in our ability to do anything we wanted made us believe that we actually could.”

  Pat recounted their early relationship: “I have never met a more generous artist. Victoria took as much joy from a friend landing a part as she did when she got work. Victoria never liked it much, but I often told her she’d make a great agent because she was more dedicated to advancing other people’s careers than her own.

  “Even though her career never hit the big time, Victoria was happy. She told me she was happy many times, and I couldn’t think of a better thing to hear her say.

  “What has the last year been like? As we learned firsthand, leukemia is not for sissies. But Victoria was incredibly brave and upbeat, even in the face of extreme adversity. Our boys were Victoria’s constant motivation. Her hospital room was covered with their pictures. Those pictures were always the first things to go up and the last thing to come down.

  “Victoria and I certainly shed more than a few tears when she was first diagnosed. But after that, what made us choke up the most were the seemingly unlimited acts of kindness from so many of you. What our family was going through definitely took the support of a village.

  “So many of you chipped in with meals, the driving, playdates, sleepovers and many gifts for our boys, and everything imaginable to make Victoria more comfortable. Many people canceled vacations, used their days off from work, and put their own lives on hold for weeks at a time to help care for Victoria, me, Nick, and Will. You have all been amazing. Thank you.”

  Pat went on to address his two sons: “This is and will continue to be very hard for each of us. Frankly, Mom is irreplaceable. But she was a valiant and brave fighter, and we need to try to be the same. Mom was always so positive and convinced that she would beat her leukemia that we never had an opportunity to say goodbye. That is too bad. I know she would have written each of you the longest letters telling you how much she loved you, how proud she was of you, and how honored she was to be your mom.

  “In time, each of us needs to strive to live the full life that Mom would want. She’d want us to laugh, to be happy, to have fun, to take risks, to have adventures, just as if she was still here.

  “I believe Mom would say to both of you, ‘Always try new things. Say yes when something new or different or hard or challenging comes along. It’s okay if you fail. In fact, fail a lot, as that means you are stretching yourself. Always be curious and learn new things. Go places you’ve never been, meet new people. If you stick to your dreams and don’t give up, you can do anything.’

  “And of course, being Mom, she’d also have added: ‘Turn off that video game and go outside and play … and practice your musical instruments. And don’t forget to put the toilet seat down.’

  “A friend recently wrote me something beautiful that stuck with me,” Pat concluded. “‘Victoria will be greatly missed, but also greatly remembered, and she lives on in the memories of all those who knew her or who she touched or influenced in any way.’”

  CHAPTER SEVEN

  pat (also a love story)

  It is a curious thing, the death of a loved one. We all know that our time in this world is limited, and that eventually all of us will end up underneath some sheet, never to wake up. And yet it is always a surprise when it happens to someone we know. It is like walking up the stairs to your bedroom in the dark and thinking there is one more stair than there is. Your foot falls down, through the air, and there is a sickly moment of dark surprise as you try and readjust the way you thought of things.

  —LEMONY SNICKET, HORSERADISH

  Alison and I also talked about how this (“this” being the book, the play, whatever comes from this, because something must) is also a love story. I suppose that is true. I cannot imagine doing this without Pat or my amazing loving boys and friends. I told Pat that as scared as I am about the upcoming transplant, I know that I can get through it with him at my side.

  —FEBRUARY 23, 2015

  I texted Pat to wish him a happy Father’s Day and to let him know I was almost done with writing the book. He had just returned from a whirlwind college tour with his boys. They had purchased a Mercedes sprinter van, which they drove between colleges in the Midwest as if they were fraternity brothers on a road trip. I asked Pat if he wanted to see the finished manuscript, uncertain about his reaction because he hadn’t read Victoria’s journals. I wasn’t sure he would be able to face them. He texted back: “I am grateful and impressed that you have finished it. Instead of getting a copy now, how about you sign a copy for me and send it once it gets published?”

  Three weeks later, I announced to Kathryn that I had finally finished writing, just shy of two years after Victoria’s death. Out for dinner with friends that same night, we received an urgent call from an intensive care physician at UCLA Medical Center. Pat had been brought in by ambulance. He was in a coma and on a ventilator. The doctor explained that Pat had collapsed after a workout with Nick; he’d become unresponsive and stopped breathing. Nick had been home alone with his father at the time. He’d had the presence of mind to call and start CPR. Paramedics inserted a breathing tube into Pat’s trachea and took him to the UCLA Medical Center in Westwood.

  An emergent head CT showed that my brother-in-law had a subarachnoid hemorrhage, most likely caused by a ruptured aneurysm, which filled the undersurface of his brain with blood. Indeed, a CT angiogram showed a small blister on the anterior communicating artery, which connects the two carotid arteries. This was felt to be the likely source of his hemorrhage. The anterior communicating artery forms the front portion of the circle of Willis at the base of the brain, which ensures redundancy of blood supply but is often a site of weaknesses in arteries, whose walls can balloon to form aneurysms.

  In addition to extensive bleeding, Pat developed obstructive hydrocephalus, a condition in which the fluid chambers, or ventricles, inside the brain become enlarged and exert pressure on the surrounding brain. This can cause coma and, if untreated, rapidly lead to death. Normally, spinal fluid is produced inside the brain, circulates in the subarachnoid space, is reabsorbed into the veins along the top of the brain, and serves to provide a protective cushion for the brain. A subarachnoid hemorrhage fills this space with blood and blocks the normal circulation of cerebrospinal fluid.

  Years before, Pat underwent two surgeries to repair a faulty heart valve. This congenital malformation of his aortic valve is known as a bicuspid (“two-leaves”) valve, instead of the normal tricuspid, or three-leaflet, aortic valve. There is an association between this condition and the formation of brain aneurysms, but a screening scan of his brain from 2010 was normal. Before his valve replacement, his aortic valve was stiffer than normal, causing severe aortic stenosis, restricting normal blood flow from his heart. This would cause heart failure if left untreated. The first replacement had used a pig valve, which does not require blood thinners. But an infection of the valve soon after his first surgery caused rapid deterioration of the replacement; within ten years he required a second surgery. This second surgery had been technically difficult because of scarring on his heart against the inside of his chest.

  At the time, his surgeons had chosen to install a mechanical aortic valve instead of a bioprosthetic one, the logic being that mechanical valves typically last lo
nger. They had hoped this would allow him to avoid the bleeding risk of a third surgery. The downside of a mechanical valve is that the patient needs to be on anticoagulation with warfarin or Coumadin for the rest of his life. Without a strong blood thinner, the turbulent blood flow leads to thrombus, or clot formation, which can cause a stroke. Ever since his second heart surgery, Pat had needed to check his blood clotting and adjust his daily Coumadin dosing to keep his blood thin enough to prevent a stroke.

  Pat had always been athletic and loved to ride a road bicycle. He had to severely cut back on risky activities because any fall or injury could cause dangerous internal bleeding. But even without an accident, bleeding is often much worse for a person on blood thinners, particularly in the brain. This was the case with his aneurysm rupture. While protective of his heart, the thinned blood likely contributed to a greater amount of blood leakage from the ruptured aneurysm, evidenced by a thicker and more extensive blood clot at the base of Pat’s brain. In addition to a more severe hemorrhage, the doctors at UCLA were unable to treat his hydrocephalus until the effect of the blood thinner was reversed. Once it was safe to treat the hydrocephalus, a flexible drainage tube was placed by Dr. Patel, a neurosurgical trainee, without difficulty.

  SUNDAY

  I spoke at length with Dr. Patel at 2:30 on Sunday morning before driving an hour from Greensboro to Raleigh to board yet another flight to Los Angeles at 7:00 a.m. Dr. Patel explained that their preference would be to coil the aneurysm (a procedure done with catheters from within a patient’s blood vessel), but given the anatomy of the aneurysm (small, no neck), they would not be able to do this with coils. Instead, they would have to clip the aneurysm surgically.

  As the only physician in the extended family, I was asked by Pat’s family to make medical decisions on his behalf. I reviewed the options with them and consented to craniotomy and surgical clipping of the aneurysm, which was to start that morning.

  The surgical treatment of an aneurysm does not improve a patient’s neurologic condition, but it does prevent additional, potentially life-threatening hemorrhages from occurring. Eliminating the aneurysm also allows doctors to treat late complications of subarachnoid hemorrhage, such as vasospasm. This causes constriction of the arteries supplying blood to the brain and can result in a stroke. Raising the patient’s blood pressure will counteract vasospasm, but this is only possible if the aneurysm has been removed from the circulation, since high blood pressure will increase the risk of additional bleeding from an unsecured aneurysm. The extent of initial hemorrhage correlates with the likelihood of developing vasospasm. In Pat’s case, given the large initial blood clot, later vasospasm was likely. The window for surgery in such a case is only a few days, since the risks of surgery after vasospasm has commenced are prohibitive (this typically begins four days after initial hemorrhage). So, it was now or never.

  Yet, I hesitated to agree. Pat’s neurologic condition was poor, and I knew, from previous discussions with him as a result of Victoria’s illness and death, that he would not want to survive in a vegetative state. I was leery of setting down a procedurally driven road of surgery, tracheostomy, PEG (feeding tube), and shunt, followed by transfer to a skilled nursing facility and a potential existence, rather than a life, in long-term care. I knew he would not want that. He wanted to be there for his children, not to become a burden to them, but he would rather be dead if he could not remain vital.

  It was not immediately possible to determine the cause of his diminished level of responsiveness. His initial neurologic exam was extremely poor, reflecting a deep coma (fixed, nonreactive right pupil and minimal withdrawal of his extremities to noxious stimuli, such as nail-bed pressure, but otherwise complete unresponsiveness). He would not open his eyes and would not breathe without the support of a respirator. Time would tell if he would recover from the placement of the external ventricular drain (EVD), but there was also urgency to controlling the aneurysm. By the time I boarded the plane for LA, he had not improved at all. It was worrisome that his level of coma reflected a more permanent injury, but only five hours had elapsed since the procedure. This was not long enough to know if the drain would ultimately prove effective.

  There were three possible explanations for Pat’s neurologic condition. The first, likely irreversible, was from the hemorrhage itself. Arterial blood released suddenly into the brain from a ruptured blood vessel can cause great damage, cutting through delicate structures like a knife through soft butter. He had presented with a devastating hemorrhage, Hunt and Hess grade four out of a possible five. Grade five means the patient is close to death. Grade one means the patient is neurologically intact except for a headache. An aneurysm rupture is like an explosion in the brain: there is direct brain injury as a result. Often, this injury is not recoverable.

  The second possible explanation for his poor performance was obstructive hydrocephalus. Often, placing an EVD into the brain can reverse neurologic deterioration and people can thereafter make dramatic recoveries.

  A third possibility was the period of respiratory arrest that preceded Nick’s initiation of CPR. A prolonged period of oxygen deprivation could certainly cause devastating and irreversible brain injury on its own and also compound the effects of the hemorrhage and hydrocephalus.

  An additional concern was that once a craniotomy has been performed, or for that matter, when there is an unsecured aneurysm, it is unsafe to resume blood thinners for at least one to two weeks. Yet throughout that period Pat would be at high risk for a stroke, which could by itself kill him. These are examples of some of the complex concerns I had and the untenable balances that needed to be struck with the chain of events unleashed by Pat’s aneurysm rupture.

  I talked to Dr. Patel for almost twenty minutes, both of us speaking the same medical language and having intimate familiarity with the complexities and pitfalls of managing subarachnoid hemorrhages. I explained that I was fine with proceeding with surgery but said that we would need to assess Pat’s progress afterward to decide whether to continue or withdraw care. Dr. Patel indicated that this was a reasonable approach and said that the attending surgeon, Dr. Lekovic, was very compassionate and would be comfortable addressing those issues with us after Pat’s surgery.

  We wanted to give Pat every possible chance to recover, yet we didn’t want to condemn him to a persistent vegetative state. The window of time to withdraw care is a narrow one. After the custodial procedures of shunt, feeding tube, and tracheostomy insertion have been performed, the decision to withdraw care becomes a much more uncomfortable prospect, presenting difficult choices, such as cessation of nutrition or refraining from treating incidental infections with antibiotics, and potentially causing greater suffering for the patient. If Pat did not make progress after surgery, he would still be dependent on the ventilator and the EVD, and the decision to back off on those supportive measures would lead him to die peacefully and unaware of his circumstances. I knew this was the decision he would have made for himself. This is the decision I would make for myself if I were in his situation.

  Some would challenge that withdrawing support would actively lead to Pat’s death and deprive him of the hope of recovery. I would argue the opposite. The machines were the unnatural things keeping Pat alive. The decision to withdraw support does not condemn someone to death. Rather, it removes our mechanical interventions from condemning the person to a prolonged life of pain, lack of awareness, and suffering. Where some would cling to hope, I clung to dignity. I knew Pat would never want the marginal existence we would inflict upon him by doing all of these procedures. Putting him through such interventions would only make sense if there were a significant likelihood of his recovering consciousness and independent function.

  But what of his children? Weren’t they reason enough to persevere? After all, Victoria hadn’t hesitated to accept whatever therapies were suggested to her, embracing them so that she could survive for her children. Even in the best-case scenario, the father whom the boys knew and lo
ved no longer existed. Keeping Pat’s body alive would not preserve him, and over time their memories of the active, passionate man they knew and loved would be supplanted by memories of visiting Pat in a nursing home, of bedsores, urinary tract infections, and contractures, of their father physically wasting away. It was devastating to realize that my nephews, in the space of two years, would become orphans. I worried that Nick probably felt guilt and personal failure, while I saw only devotion and heroism. On two separate occasions he acted with tremendous maturity and courage on behalf of his parents, the first time as a willing stem cell donor for his mother’s bone marrow transplant and the second by calling and initiating CPR, alone, on his father.

  In the end, despite all our knowledge and skill, we are frequently powerless to undo that which has befallen us. Recognizing our limitations, we must cure when we can and console when we cannot, all the while being as honest and empathetic as possible. We must be willing to accept defeat and discontinue treatment, admitting our limitations. This is often more difficult than continuing in pursuit of long odds and unrealistic hope, as so often happens in ICUs and acute care settings, where efficiency of care is often valued and tough decisions may be deferred.

  I met Joe Whelan, one of Pat’s older brothers, his wife Deanna, and Diane, a close family friend, at the hospital. By the time I arrived on that quiet Sunday morning, Pat was in surgery. A number on a screen in the first-floor surgical waiting area had gone to red, indicating the procedure had begun. After an hour of sitting with no news, I snuck past security with one of the visitors’ passes and made my way to the sixth floor, the neurotrauma ICU. I pleaded my case into the security phone outside the locked double doors to the ICU. Even to a physician who understands the way hospitals work, this seemed like an intimidating and impersonal place. The charge nurse, Holly, came to the door. I explained that Joe, Deanna, and I had arrived from the East Coast and were sitting in the surgical waiting room on the main level, hoping for news. She called down and found out that the surgery had only just begun and would continue for at least six hours. With that information, she gave me a generous, empathetic hug and advised that we leave the hospital and try to get some rest. Later, she was gracious enough to call at 3:00 p.m. and let us know that we should return to the hospital around 4:30.