Wednesday, December 14, 2011

A Simple Change of Heart (Part Two)

     As I listened to Gwen's voice telling me she had decided to proceed with the LVAD, my heart sank. She'd been so opposed to it in our previous conversations; what made her change her mind? I thought back to a visit Brad and I made to Fair Hope only a few months earlier, when I'd shown her a video that some of my anesthesia residents and I had created, sort of a public service announcement on end-of-life issues. The video portrays a young father, gravely ill with metastatic cancer, who undergoes surgery without advance directives for end-of-life care. He experiences complications from the surgery, leaving his father to reluctantly decide his fate. As the video ended, Gwen and I shared a brief, agonizing moment of prescience, a mutually imminent awareness of her mortality.  "I don't want to end up a vegetable, and I don't want any more surgery." she said, frankly. Silently relieved that the LVAD was a non-issue, we made our way back to the welcome refuge of her kitchen.
     It was difficult to know what to say to Gwen now. She asked me, "Do you think I'm crazy for doing this?" That was a loaded question. I was confused about what had happened that weekend, and why she had changed her mind. I was frustrated with her cardiologist, perturbed by the fact that he had failed to present palliative care as a viable option. Most of all, I was troubled by my intuition, which was telling me assuredly that she would not survive this operation, and that if she did, the LVAD would only buy her a few more months at best. "I'm not ready to die yet." she told me. She was 75 years old. In hindsight, what Gwen was really struggling with, more than her own inevitable death, was the idea of relinquishing her role as a caregiver. If she were to let go now, who would take care of Bob and Dot? Her deep concern for them, and perhaps, her own denial enabled her to successfully conceal just how sick she was from all of us until it was too late. I wish now that I had done a better job of trying to talk her out of it.
     The next day, arrangements were made for Dot to go live in Florida with Gwen's younger sister, and Gwen was admitted to a hospital in Mobile for a right heart catheterization. Her heart was too weak to tolerate the procedure, and she was emergently life-flighted to a hospital in New Orleans which specialized in advanced cardiac care. The plan was to insert an intra-aortic balloon pump, a temporary means of improving her heart function. If she experienced improvement on the balloon pump, she would be considered for the LVAD. It took three days of tweaking her cardiac drips before Gwen got the balloon pump. Her heart function improved, but her nutritional status was dismal, a result of the ongoing energy her body had to expend to keep her failing heart pumping. She was literally nothing but skin and bones, and she needed to be fattened up before she could receive the LVAD. Not surprisingly, Gwen refused a feeding tube. My sister-in-law, Laurie, and I tried to coax her into drinking the Ensure shakes that were lining up in a row on her bedside table, and sometimes, it was like dealing with a fussy toddler. Because the balloon pump was positioned perfectly within her aorta, she had to lie flat, and couldn't get out of bed. She developed terrible neck pain, and was receiving morphine, which wasn't helping too much. It was hard to see her so incapacitated. Despite this, Gwen remained optimistic. Her surgeon had reassured her that she'd be able to garden and cook again, the prospect of which kept her going. Not only was she anticipitating more quantity of life with the LVAD, she was counting on a dramatic improvement in the quality of her new life as well. LVADs require a great deal of caregiver education, and given the fact that Bob was 84 years old, we were all concerned about whether he was adequately equipped for such an undertaking. He barely knew how to turn on a computer. At some point during those few days, Gwen's estranged younger son, Mark, surfaced to visit her. Once a successful business owner with a wife and two beautiful daughters, he had developed a crack addiction, and Gwen hadn't seen or heard from him in several years. This was a source of great sorrow for her. None of us saw him, and we wondered if her report of his visit had actually been a hallucination from the morphine. I personally spoke with her cardiologist and cardiothoracic surgeon, imploring them to get palliative care on board. I had done my research and I knew that, at other major institutions, palliative care is actively involved with patients who receive LVADs as destination therapy. They both declined, and their message was clear: they intended to save Gwen.
     The next few weeks are a blur. Gwen was deemed an appropriate candidate for an LVAD, spurring an unpredictable and emotionally draining post-operative ICU course, the magnitude of which no human being should ever have to endure. Despite the fact that she had a living will, which clearly stated that she did not want to be kept alive by artificial means, her acceptance of the LVAD provoked an assumption that in agreeing to the procedure, she would also accept any interventions felt  necessary to ensure her ongoing survival. Without realizing it, she'd sold her soul to a device manufacturer.
     Days turned into weeks, and aside from one lucid period where Gwen got to sit in a chair and eat real food, she remained confused and intubated, sedated while on the ventilator, with countless tubes and IV drips. Her kidneys failed within a few days of the surgery, requiring continuous hemodialysis. Her pulmonary status would temporarily improve, permitting her breathing tube to be removed, but her oxygen level would then drop, and she'd be reintubated, over and over again, in direct violation of her living will. Laurie, and her husband, Brad's brother,  Brian, spent several weeks in New Orleans, and we received daily updates from them. Bob was confused and exhausted, and given the fact that Gwen was largely incoherent, Brian and Laurie felt he needed to return home to Fair Hope to regain some sense of normalcy. He made the 145 mile trek from Fair Hope to New Orleans several times a week, being driven back and forth by friends and family.
     Gwen wasn't getting better, and in fact, she seemed to be getting worse. Although Bob, Laurie, and Brian continued to receive cheerful assessments of Gwen's progress from the cardiology and surgical teams, it quickly became evident that she was fighting a losing battle. She never got off dialysis or the ventilator. Following two full weeks of being intubated, she received a tracheostomy, after which she no longer received sedation. She had a feeding tube and multiple IV lines. She had a GI bleed and pneumonia. She was awake, and she was bored, and the strange irony of this whole scenario was that her manicure and pedicure still looked perfect.
     Although we had all strived to support Gwen's desire to extend her life with the LVAD, we could no longer tolerate its consequences. Perplexed by her lack of visible progress and the empty reassurances that she was improving, we came together as a family, and requested a hospital ethics consult. Armed with the agenda of upholding Gwen's living will, Brad and I drove down from Georgia to join Bob, Brian, Laurie, and Gwen's oldest son, Jack, for this crucial meeting. We were not at all prepared for what we witnessed when we first saw Gwen. Her body was now covered with open sores and blisters, the result of Stevens-Johnson syndrome, a toxic reaction she'd recently developed to one of her medications. She looked like a burn victim. She couldn't stand to be touched because it hurt too much, and we learned from her nurse that she was not receiving any pain medication. She was awake and alert, and she was suffering. Because of her trach, she couldn't talk, and her writing was illegible, so our only communication with her was through nodding or gesturing. In two separate conversations with Jack and Brian, which were witnessed by us and her nurses, Gwen indicated that she wanted to be removed from life support.
     The ethics consult was an impressive assembly of professionals, which included Gwen's surgeon and cardiologist, along with an anesthesiologist, several intensivists, palliative care physicians and nurses, social workers, respiratory therapists, surgery residents, and medical and nursing students. Brad's brother, Greg, and his long-time girlfriend, Becky, joined the meeting via Skype. Together, Bob, Brian and Jack made eloquent pleas for the relief of Gwen's suffering by honoring the terms of her living will. In a particularly poignant moment, after Gwen's surgeon had defended the LVAD, proclaiming "It's doing its job, and her heart is better", Bob humbly, yet defiantly, responded, "You keep telling me that, but every time I come here to visit, Gwen looks worse. This is not how she wants to live." The committee voted in favor of removing Gwen from life support, with the involvement of palliative care. We all experienced a profound sense of relief, even though we knew it meant we were finally going to lose our sweet Gwen for good. A morphine drip was started that afternoon, and Gwen went from being alert to comfortably sedated to comatose within a matter of hours. She died shortly after midnight, and it was a dignified, good death, surrounded by family who loved her fiercely, and had given her the permission she needed to let go.
     At Gwen's funeral, Mark made another appearance, wearing a thrift store suit with a dry cleaning tag exposed on one of the vents of his rumpled jacket. It was the first time he'd seen his ex-wife and girls in four years. He'd thrown his life away for drugs, and seeing his family was a painful reminder of the beauty and richness he'd traded for a cheap high. The reunion was awkward and bittersweet, and his eyes conveyed a tragic sense of remorse and regret. He'd lost his family, and now, he'd lost his mother. He and Brad hadn't seen each other in years, and they exchanged cell phone numbers, with the intention of keeping in touch. A couple of weeks after the funeral, Brian called and told us Mark had hung himself. I suspect he must have felt so acutely overwhelmed by guilt and shame for the irreparable damage he'd caused his family, that he saw no other choice. It was as if the loss of his mother was the final straw; he'd truly lost everyone he had once loved and who had once loved him. I know Gwen would have forgiven him. Brad seems to think that if heaven does exist, it is a place where Gwen and Mark are together, free from suffering, trading jokes, and that she is cooking him their favorite meal of red beans and rice.

What Is Palliative Care?
Ethical Challenges with the Left Ventricular Assist Device as Destination Therapy
Destination Therapy with LVAD

Moribund: Video on End-of-Life Issues



  1. Kris, my condolences on your loss. The end is always so sad. The desire to live is still there, but the capability is gone. I know how helpless I felt as I watched my mother slowly fade away. Frankly, I think dying is just one big mess.

    1. It really is such a mess. I hope that when my time comes, it will be swift and unobtrusive.

  2. I appreciate that writing this two part very personal story must have been a difficult ting to do. And I'm so sorry to read about this loss of Gwen and Mark too. When I read about death and when I lose another family member or friend I contemplate my own death and hope it will be a peaceful one that I ready to accept when the time comes.