I found out that that my grandpa had late stage cancer two weeks before he died. That was six weeks and a surgery after everyone else in my family found out that he had stomach cancer that had spread to 90% of his liver. I was away at school and no one wanted to "burden" me with the news because my grandpa and I were very close. They told me that the surgery was for an ulcer and that he would be recovered so that we could go for our much anticipated trip to Japan to participate in a YMCA Peace Conference that summer. After the surgery, the oncology surgeon reported to the family that he had "never seen someone alive with that much cancer."
When I returned home at the end of term, my mother couldn't stop crying as she told me that grandpa had cancer. I was in shock, "how serious?" 'Very.' "We should go then." 'We have flights to leave tomorrow.' When we arrived, he was in the hospital. His belly was distended and he was puffy like I had never seen him, or anyone really. He put on a good show for me, as he always did. Just three months before, he had driven from Toronto to Connecticut for Easter to visit me at school; he brought me containers full of rice krispy treats and chocolate chip cookies and had come to see that I was "OK" at school. I was so happy to show him the school that I loved and to meet my friends. Most of all, I was thrilled to see him, because I missed him most of all my family. Every spring and fall, he would come to stay with us for a couple of months; he was stricter than my parents but we also broke lots of rules and ate lots of good food. Mostly, we would be together. Me working on homework; he watching Japanese samurai soap operas on TV. Since I was away at school, I hadn't realized that he hadn't visited that spring or fall.
One night in the hospital he awoke in a panic, confused about where he was. He tried to leave his bed in the middle of the night. When we arrived in the morning, we were debriefed about the episode and assured that he was being well managed. He was significantly more sedated. I noticed the chart at the foot of his bed said "full code." I asked my Mom why he was full code, if he was dying of cancer, wouldn't we want him to die peacefully, not with his chest being compressed and heart being shocked. It would be a violent way to die, which was inevitable at this stage. My Mom talked to my grandmother and they spoke with the doctor who added a "do not resuscitate" to his chart that day. From that night on, my Aunt stayed with him overnight. He died the next night.
The fortunate thing was that two days before he died when he was still lucid, I spent some time with him. I read him the lyrics of a song "Turn, Turn, Turn," which it turned out is inspired by the passage of Ecclesiastes 3:10 "To everything there is a season and a time for every purpose under heaven." That was as much as we spoke directly about death, and I told him that I loved him and thanked him for everything that he had given me. He thanked me. I didn't know then why he thanked me, but he did. We said, goodbye to each other. No one else in my family said goodbye. I was 16.
When he died, everyone in my family was surprised. They didn't realize that he was "that" sick. It turned out that my grandmother hid the severity of the diagnosis from the two younger daughters (mid 40s adults). Even my mom, a retired nurse, had been on the phone the day before arranging to fly across the country for a week before coming back to spend more time. It always perplexed me that no one knew that he was going to die.
This video about the McGruck Effect struck me as potentially providing insight into what happens in the disconnect between patients/families and physicians at the end of life.
As physicians communicate their clinical observations to patients and their families, it is also not surprising that families may see something different. While clinicians may explain the patient's status and family members may hear the information, family members will believe what they see. Family members make sense of the complex and confusing information by privileging the information they gather from being with the patient. Particularly in situations where a patient has lost capacity in some way, though debilitated, the family who frequently spend time with the person may see the person as more interactive and responsive than a clinician who visits only at brief intervals. One of the reasons that nursing and junior medical staff are critical voices in morning rounds in the hospital setting is because they spend more time "hands on" time with patients; they often provide insight into these differing perceptions.
This is one hypothesis of why things get chaotic when death approaches. Everyone sees something different and the information that we know best is what we rely upon to create meaning. Clinicians see a patient whose lab results are declining; families see their loved one still showing meaningful engagement. Often both perspectives are accurate, relevant and important to a full understanding of how to make sense of the confusing information at the end of a person's life.
My professional aspiration to mediate conflicts at the end of life stemmed from this personal experience where I could see the different perspectives and that none were hearing each other. I was fortunate to train with Nancy Dubler, who developed bioethics mediation as an approach to clinical ethics consultations from her experience that most of ethical dilemmas in clinical medicine were values conflicts that could be resolved by mediating in a conversation that leveled imbalances of information and power. As we move care to the community setting and as the end of life is increasingly in care homes or community-based care settings, how can we bring this wisdom from the clinical setting to community delivered care?
How does it happen that no one knows? Why do things end up so chaotic at the end?