Cancer is a shared disease.
I have known Dr.Patricia Omidian for nearly two decades. I became aware of pioneering work on ‘FOCUSSING’ to address the trauma of war affected populations in Afghanistan and other countries where people are living in conflict situations. The approach of Focussing is not disease oriented but person oriented and for growth of emotional health. She is co-founder of Focusing Initiatives International, email@example.com
During the last few days, Pat shared her personal experience of two of her close family members in their end of life situation. The writing illustrates the importance of SHARING with close family members the details of illness, treatment and what are the choices in the end of life situation.
It has a message for all persons living with a diagnosis of cancer and their caregivers.
I thank her for her permission to share it with the group.
June 22, 2018.
Dear Dr. Murthy (you know I will probably always call you that);
I remember the first time we met, outside the hilltop hotel on the outskirts of Kabul, Afghanistan. Then the second time in Amman Jordan.
So I want to share with you two recent experiences with the end of life of two people close to me. For both I played the role of care-giver and for one also as an advocate.
The first was my ex-husband (Terry), the father of our son. Terry had been battling cancer, and he saw it as a battle, for about 26 years. He was diagnosed shortly after our divorce with multiple myeloma and decided to work with the doctors at the research hospital at the University of California San Francisco’s medical center. Over those 26 years, our son was told a number of times to prepare for his father’s death as he was not expected to pull through. And each time he did. This time felt different and I got a call from our son that he was with his father in the hospital and would I come. Even at 40 years of age, it is hard to lose a parent.
I dropped everything on April 1, and was on a train that evening for California, arriving at 6AM the next morning at the hospital. Over the next four days we were with Terry as he went from wanting to return to his home, to realizing this was his last hospital stay. He had been very clear with his son and his brother as to his wishes—actions to keep him alive, what to do with his body after death, all that. As one of the care-giver/advocates, it made it easy for all of us to be with him as he died. As family and friends gathered around him for his last four days of life, we were all of one accord. When doctors asked “what would Terry want” we all knew and could support those closest to Terry as they gave instructions to remove extra life support and move to what USA hospitals call comfort care. At the end, as he passed, we all knew what would be next. He had made it very clear to everyone that he wanted his body to go to science—to the university research hospital where he had been treated for so many years and to the doctors with whom he had built a relationship of science and friendship. This was a radical move for a person from a Muslim culture but there was no criticism or complaints as he had been explicit and shared his wishes widely. That helped us all to prepare for his death and for dealing with his wishes. When it was over and we all gathered in mutual grief and support, we felt love and connection, and peace.
My second experience occurred two weeks ago (June) when my Auntie Ann called me. She told me she was very sick and was in and out of the hospital. Ann said she was on oxygen 24 hours a day and struggled with getting enough when she was home (at 1400m elevation). Her only complaint at that time was that she had a bad fall and felt it was the reason for a collapsed lung. Because she said she didn’t know how much longer she would be alive we talked about ‘end of life’ issues like wills, estate plans and medical directives. She said the first two were in order but for the latter, could she designate me as #2 (behind her son, Vic) for medical power of attorney. This means that if she cannot make medical decisions that I would make them for her. And she noted that she knew her son would not be able to do what would be needed. She let me know that I would have to possibly make decisions that her son would not like. In addition, she also noted that she wanted her body to be donated to a science and research institute. I found out later that no one else knew that.
Several days later Ann sent me a text asking me to come. I immediately flew to California (again) to be with her. Vic met me at the airport and as we drove the two hours up the mountains to where they live, we talked about his mom and what he had been doing to help her, as her care-giver. He said that doctors were still trying to figure out what was wrong with her but that she was very sick and not able to get out of bed for very long at a time. I learned that she had cancer, but the doctors told Vic that they didn’t know for sure what it was. There was also a problem with her pancreas but they could not operate.
I was shocked to see Ann, as she was radically different from the seemingly healthy Ann I saw in April when she drove down ‘the hill’ to get me at the train station and take me to see Terry in the hospital. And when I arrived and saw Ann it was very clear that she was very very sick. This was Wednesday afternoon. On Friday morning we took her to the emergency room (1 1/2 hour drive from home) as she was unable to eat and barely able to drink. The emergency room doctor let us know the diagnosis (first time for Vic and I and maybe for Ann): stage 4 lung cancer and that we would be put in touch with hospice to help with home care. As the day progressed Ann’s health went straight down hill and we had no time to consider options. I had to do as Ann asked and step in for “end of life” decisions as I helped her son cope with what he was having to face. Vic is an adult, but this is his mother and he, for the most part, turned to me for advice and to explain what the doctors were doing. Our extended family showed up and rallied around Ann and Vic. But it was to me that the doctors turned for decisions. And that was not easy because Ann had not shared her illness or her wishes with many, including her son. We knew, as a family, what we usually wanted. But no one else knew she wanted her body donated to science. No one else knew her specific wishes about life support in this time. I did because Ann and I had talked. But her son didn’t know and we all needed to help him. It became clear that she knew how bad her health was and yet she told no one. This made our situation very difficult. We had to postpone grief and deal with the rapid, moment to moment changes in health. She died two days after her admission to the hospital.
I, as someone who works internationally in community mental health, knew also that I needed to maintain self care, so I spent time on breaks in meditation, Focusing and prayer. I encouraged Vic to also take care of himself and found tasks for him to do that were meaningful but also took time. He wanted to be with his mom but not when she died. So we respected that. My job felt like one of a balancing act: caring for Ann and making sure she was comfortable and out of pain as she died; and care for Vic so that he could come to terms with her death.
I write this because what I learned from these two experiences is that cancer is a shared disease. Yes, the person with cancer has to manage all kinds of obstacles, including pain from the disease and the medications, fear of the future, struggles with health care systems all as the body is becoming weaker. And yet, each of us is part of a larger social network of family and friends who will be left behind. My ex-husband shared his health status with family and close friends. He expressed his wishes for what comes after he died. We all knew and could spend our time responding with assurance that we were all meeting his wishes. We also had time to prepare for his eventual death, not that we wanted him to die, but that we knew it would be the end of his pain. I could be in the room, totally supporting my son as he supported his father. In contrast, my aunt let no one know. Even her son was never told the level the cancer had reached. He was unprepared because he did not know her wishes, her intentions. With Ann, I had to support Vic as we learned how sick his mother was, AND support her end of life. There was no time to adjust to the idea that she was suffering from cancer and that it could not be treated. Our whole family suffered more with my aunt than with my ex-husband, because we could not prepare. I had five blessed days with Ann at the end, three of those in the hospital working to help her end of life to be kind and gentle. That wasn’t enough time for something of this magnitude. But with death, is there ever enough time?
Pat Omidian, PhD
International Consultant, Trainer, Author, Speaker
Focusing Initiatives International