Abstract
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After being diagnosed with stage IV nasopharyngeal cancer in 2011, my husband, best friend, and soulmate, died on March 14, 2015. His mission was to teach health care providers, students, and the public about his journey with terminal illness, sharing his experiences through a video blog, e-book, and a series of public appearances (www.dbocancerjourney.blogspot.com). He outlined his wishes to “die well” using the acronym HOPE: H—to die at Home, O—to die surrounded by Others, P—to be Pain free, E—to remain Excited about living until the end.
David's HOPE acronym guided our family decision making through the final days and hours when he could not express what he wanted or needed. Through numerous conversations over four years about his values, goals, and fears we came to understand what “dying well” meant for him. We knew his wishes, knew his priorities, and all decisions were based on that one simple acronym. In honor of his mission to “deprive death of its strangeness” and to get people talking about death and dying, I would like to share details of his death (exit) with the goal of educating other families who experience this once-in-a-lifetime event, as well as those who experience it professionally every day. I offer the intimate details of his exit, and my experience loving him, as he “rode over the waterfall” (as he called it).
As a professor of family medicine, a social worker, a former hospice director, and a researcher on hospice caregiving, death and I are not strangers. The courage required by loving spouses, children, and others who assume the role of caregiving and travel this journey alongside a loved one is noteworthy and not well understood. Despite my professional contact with death and dying, I found myself anything but an expert when it became personal. I have written on the collision between my professional and personal worlds, the 42 months of bittersweet waiting, and the million losses we experienced along the path.1-3 The final days brought even greater reality to my research. I experienced the sights, smells, and sounds of the dying process that I had only read and heard about secondhand. I experienced deep emotional reactions to increasing physical changes in the most important person in my life. I found myself explaining the dying process to my husband, children, and grandchildren, as I had as a social worker years ago with countless other patients and families.
As a hospice administrator I was privileged to listen to my staff reflect on their experiences with patients transitioning from this life to another. As they debriefed following the death of patients, they shared stories with me regarding how it went, what the problems were, how they felt. I had heard the pride and frustration they experienced with the clinical details of managing pain, alleviating anxiety, managing secretions, and educating and supporting families through long hours of vigilant waiting. I was keenly aware of the final signs of impending death and had even participated in research trying to prognosticate death. 4 While this knowledge prepared me for what to expect in David's final days, it did not prepare me for how it would feel or sound.
David had chosen to deny the warlike language and attack on his cancer, refusing the normal weapons of chemotherapy and radiation to “fight” his disease. He was passionate about learning to live with cancer rather than fight it. After experiencing one initial round of chemotherapy, he decided to manage the side effects of the cancer rather than the side effects of the treatment to fight cancer. Avoiding hospitals and clinics whenever possible, our time was spent traveling the world accomplishing a very long bucket list.
His chosen path allowed him to maintain a positive view throughout his journey. To maintain this attitude he would at times ignore or minimize the negative aspects of the experience. With each clinic visit or each conversation with a friend, he put on a smile, focused on them, rarely discussing his own challenges, giving an Academy Award winning performance. In the final two weeks these performances became more difficult for him to manage, exhausting his energy, and causing him to rethink his desire to be surrounded by others. He realized he needed his energy for our family, requesting that I limit visitors. At home, the secrets of the backstage were present as we saw through to his soul, watched him change, and witnessed his many challenges. As his energy drained and communication lessened, we were privileged with words of wisdom and a lot of love, as he unselfishly wanted to make our journey into grief easier.
Among my personal challenges were his numerous “rallies.” As I mourned his decline day after day, he would unexpectedly experience a burst of energy, tricking my emotions, giving me false hope that perhaps death was not at hand. One day he would be unable to safely walk across the floor, the next day he would ask for someone to accompany him on a walk around the block. The contradictions between my observations, his public self, and his up and down physical condition made me feel quite “crazy.”
His biggest rally came two weeks before he died. I was scheduled to make a quick trip (48 hours) to accept the Project Death in America Community Education Award from the Academy of Hospice and Palliative Medicine. He was sleeping most of the day and had gone two days without eating. I was reluctant to leave him, and our hospice nurse was advising against it, both of us thinking the time was near. When he realized I was staying home, he managed to rally. He agreed to having two of our children move in while I was gone and care for him. He began eating and drinking again, insisting that I go, that he wanted and needed me to go, promising he would not die while I was gone. He told our oldest daughter, “No one knows how hard I am working to make sure Debbie is at that meeting.” With the help of our son-in-law, he joined the conference via Twitter, not wanting to miss anything, absorbing all the comments and all the love that was sent his way from attendees. He grew anxious as I neared home, texting me constantly, wondering where I was, wanting me to get home to him. As I walked into the house and saw him after two days away, the physical changes in appearance were shocking. I realized that, isolated at home, I had grown impervious to his physical decline. However, after leaving and returning, it was obvious that despite the performance of the last two days, he was “heading toward the waterfall,” as he so fondly called it.
My professional knowledge of the signs of impending death was one source of information; however, it was the emotion in my heart that spoke the loudest. Witnessing my extroverted, “life of a party,” outspoken man begin to withdraw into himself, stare into space, and distance himself from the world was unbelievably painful. The deafening silence of his unspoken words when I knew he had plenty to say, and the distant look in his eyes, were like bullets into my heart. I had explained this process to numerous family members, yet to see it and experience it with my husband made all my words over the past years meaningless. I guessed he only had a couple of weeks to live; in fact, we would have 15 days.
Even if not evident outside of our family, David and I both knew the final days were at hand. He began saying goodbye to select friends, his sons, our grandsons (ages 20 and 2), and our middle daughter; I'm not sure why he chose some people and not others. This man whom I knew better than myself was at times now a stranger. Why did he not say goodbye to the other daughters? Why not his best friend? Why not me? Each interaction included heartwarming memories about what that person meant to him. Listening to those sincere, beautiful words was both a privilege and a heartache. His words became fewer each day, yet each one was deliberate and meaningful. The man of a million words was hushed by the energy required to speak.
One of his biggest losses came a week before he died when he lost the ability to get in and out of the shower. He always took pride in his appearance and in his personal hygiene. A shower, even when I insisted on being in the bathroom with him for safety reasons, was his private time. He looked forward to feeling normal there and was happy to use the energy required to gain the benefit of feeling clean. Overnight, only nine days before he died, he could no longer lift his leg to get in and out of the tub. It was one of his final losses of independence. He was devastated. Showers were so important to him that twice he asked our son-in-law (a nurse) to help transfer him. However, I saw it in his face, naked and frail: showers no longer meant the same thing, and in the final days he no longer cared to try. It was so hard for me as well that day. I realized that I was no longer able to care for him alone. I could not protect him or help him by myself. Not only would he not have privacy, we would no longer have privacy or be alone together. We needed a village to get through these final days. It was only with the help of our family, friends, and a caring hospice team that we fulfilled our promise to keep him home, the H in HOPE.
The children came and went, forced to make very difficult choices with their jobs and other responsibilities. Three and a half days, 84 hours before he died, we celebrated a family tradition with our three girls, a special ritual created 15 years prior. He had not eaten much days before, but that evening he ate an entire pint of vanilla bean ice cream, lasagna, and pineapple upside down cake. He posed for photos that were the best we had taken in several months. We laughed and enjoyed the evening in a very traditional family way. Again his words were limited, but his million-dollar smile spoke volumes. This was to be his final rally, his last meal.
The next morning, 72 hours before he died, we attended a faculty meeting at the University of Missouri using Skype. David was proud to sponsor an award through a family endowment to recognize excellence in palliative care. He was very anxious, letting our daughter shave him, making sure he had his Mizzou shirt in order, looking like his normal, smiling self. He spoke to the faculty with passion and excitement, thanking them for their support, sharing how much they meant to him, and encouraging them to carry on the mission. He told them his time was short but assured them he was ready. His words came pouring out so naturally, a farewell, a final performance. He would barely utter a word after closing the computer and falling asleep. A few hours later he told our middle daughter of his pride in being her father; he said goodbye, telling her he would always be in her dreams. After that conversation nearly all communication became nonverbal.
As I administered his medications that evening he made a scowl indicating he did not want them. I knew he was trying to remain alert, trying to keep some element of control. We had talked so many times about this moment, the point at which it was useless to fight the pain any longer, the point at which he wanted to be free of pain. He was so obviously struggling with pain located in his head, and he had repeatedly said he wanted sedation over pain. I reminded him of his choice to be pain free and asked him if it was time to focus on comfort. He shook his head in agreement, visibly sighed, relaxed, and turned the decision making to me. I had no hesitation in administering the pain medication; I knew it would keep him comfortable. The experience, however, gave me new understanding of the numerous caregiver narratives I have read in my research. Many caregivers report immense fear administering the strong medications; they are terrified of killing their loved one.
David could no longer sleep in the hospital bed hospice had provided. His anxiety and shortness of breath were constant companions; his only rest was in his recliner. We moved a mattress onto the living room floor for me. Lying right beside his recliner, I somehow awoke when he needed something, despite the fact he didn't utter a word. A late afternoon visit by his favorite hospice nurse found him too weak to transfer, even with the help of two nurses, and he had only moments of alertness. Suddenly, he lost not only the privacy of the shower, but the ability to use a bedside commode. He would never leave that chair again. While he would be thankful that, unlike with most dying patients, we would never have to “wipe his ass,” something he often joked about, he would need assistance with the urinal. His humor remained intact as he struggled with the urinal. Our daughters would quietly step away, maintaining his dignity, trying to negotiate boundaries where they could. He would have such frustration on his face as, together, we tried to manage this odd device. This man, who was once stuck in traffic and had to relieve himself in a coke cup, found this an entirely different experience. I looked at him and said, “I know you want to say some choice cuss words. Do you want me to say them for you or can you just blurt them out?” That's all the encouragement he needed; out came an unbelievable string of curse words, without their normal volume but with the expected passion! Stress was instantly relieved; our daughters laughed from afar, generating a smile from him. While he was a quieter comic now, we were blessed to see a final glimpse of our clown.
Needless to say, moments of intimacy are rare in the weeks leading to death. Instead, we focused on savoring the moment, surviving the demands, and overseeing so many different problems. Ironically, the urinal created yet another beautiful moment, an important memory for me. There may have been no greater moment of intimacy in our life together than when I helped him with the urinal. One of the final times he used it, he placed his hand on mine, looked me in the eye, leaned his forehead against mine and held it there. One final intimate moment, no words were necessary; I knew exactly what he wanted to say. Unforgettable love.
When he became unable to swallow the Jello and his crushed medications, all of his hated pills became obsolete. I called our physician and we minimized our tools, focusing on patches, liquids, and tablets that dissolved. Our oldest daughter brought Oliver, our two-year-old grandson, to say goodbye. Grandpa reached out to hold his little hand and give him a final smile, pride so evident despite his exhaustion. Luckily, we captured the moment on film.
The final 24 hours were a mix of emotions, experiences, challenges, and small victories. I called his best friend, a physician, to come say goodbye. Despite being alert enough to use the urinal two hours before, by the time his friend arrived, it was too late for David to communicate. However, it was not too late for his friend to say goodbye. So many times, as a social worker I had encouraged families to assume their loved one could hear, even if they could not respond, and now I was living this myself. All communication would be one-sided; we did not even have nonverbal signs. The man who so passionately expressed himself was silenced in every way; his communication skills were gone.
It was time for the longest 24 hours of my life. As our friend and I talked, David's breathing began to stop and start. Our friend explained Cheyne-Stokes breathing, something I had described to so many family members but had never heard firsthand. As our friend left I had the benefit of knowing that his support was a call away and we would be in his heart throughout the day.
Like magic, our son-in-law showed up and together we decided to update the family; time was clearly very short. Within a couple of hours I was taken aback as David suddenly made a terrible moaning, choking sound. After calling our physician friend and the hospice nurse, I learned that the sound was known as agonal breathing. In all my years around hospice nurses, in all the many debriefings I had heard, no one had used this awful word or mimicked that agonizing sound, probably because it is a sound better forgotten! I was prepared for the infamous “death rattle” but not this. I heard the gasping of air accompanied by a distressing moaning, leaving me convinced he was suffering. The hospice nurse came and calmly explained that this was part of the dying process, but to this day I still have my doubts about his comfort. Thankfully it stopped as suddenly as it started and she worked to convince me he was not in pain. While it lowered my anxiety, it did not eliminate it. I was determined to keep him pain free— I had promised the P in HOPE. If I could erase one thing about those final hours it would be the horror of the agonal breathing!
Calm again, I realized there were a few other friends in our closest circle who were waiting to say goodbye. I recognized his performances were complete and it was time to invite others and to fulfill the O in HOPE. Late that afternoon, our closest friends and family arrived. They dropped everything, bringing food, offering me support, and said goodbye to David. The children who were able arrived, and our middle daughter joined us through the Internet. We put the tablet computer on a stand and she became part of our party despite being 1000 miles away. It was a party, the kind of party David would have wanted and enjoyed. I have no doubt he loved it. Friends and family laughing, sharing stories, taking turns sitting near him, holding his hand, talking in his ear, sharing hugs. The room was alive with love and laughter, all in honor and respect for this amazing man who had one foot in this world and one in the next. The party was another beautiful, unexpected, unplanned moment, a memory engraved into my heart. We were giving him the E in HOPE, excited until the end.
Once everyone left, the party over, it was time for two of our daughters and me to walk the final steps of the journey, not knowing how long it might take, but knowing we were here until the end. Unfortunately the awful agonal breathing began again. Luckily, before leaving, our physician friend had told us to give the liquid pain, anxiety, and secretion medications as often as every hour, and to add another pain patch if needed. It was clear that this was going to be a long night and, indeed, all those tools would be required.
The hospice nurse had advised us to mix the medicines together and to draw the mixture into a syringe. We had three syringes of medicine to administer each hour, all loaded with the appropriate dose. As a health care provider this sounds easy. Theoretically, at least, the medicine is administered and absorbed in the mouth, but I assure you as a wife or a daughter, it was anything but easy to do. Three syringes full of medication were an unbelievable amount of liquid to put into a mouth or under the tongue of someone unable to swallow his own secretions. It took two of us, one person to hold his head straight and calmly talk to him, explaining what we were doing, and the other person to slowly squeeze the syringe to assure the medicine stayed inside his mouth long enough to have a chance to be absorbed. Excessive secretions made this very difficult. Again, because we had talked with him so openly, the girls and I knew what to say, how to talk to him, so he would relax and he would let us help him. Our oldest daughter said, “Daddy, we are not going to let you be in pain; you always said medicine works very well with your body. We are going to give you some more now so you are comfortable.” Each time he relaxed, obviously trusting us, and the medication, to ease his suffering.
We knew early on that we had to take turns so at least one person was semi-fresh. I slept first. During my second sleep he became much worse. The girls were constantly telling him I was at his feet sleeping for a few minutes and that they were right there with him. This was the most difficult hour. They awakened me as they became exhausted and strained from hearing those awful moans, trying to calmly talk to him, and trying to administer the medicine. I took my place beside him and they both fell asleep. I was alone with him, and I was happy to be. Within 30 minutes the agonal breathing slowed and the moaning quieted again. I did not have to give another dose of medicine.
I found myself doing what I had advised so many family members to do, saying goodbye and giving him permission to let go. I sat beside him, held his hand, and said goodbye. I stroked his arm, shared a few special, private memories, thanked him for loving me and changing my life, and told him it was time to let go. I assured him that, although hard, I would manage, we would manage, because he had prepared us well. He quieted, I felt his body relax, and within a half hour all the noises stopped, no more labored breathing—he rode over the waterfall. Clearly he had waited for me, waited for us to be alone; clearly he wanted to die in my arms.
In going through his writings I found this:
I hope to be pain free and excited about the end. Knowing that these things don't always work out, at minimum I hope Debbie is holding my hand and lying by my side. It would be great if I were aware of her presence and of others who may be surrounding me, but again, this may not be likely either. At least it feels good to think that it may happen this way.
Our family and friends fulfilled his exit strategy. He died at home, surrounded by others, pain free, and excited until the end. I was holding his hand as he went over the waterfall. In an instant this chapter closed and a new chapter began, the journey of grief.