Saturday, March 22, 2014

The Tricky Business of Dying

       A friend of mine has recently shared with me her not so positive interactions with a friend of hers who is dying.  This friend is a compassionate woman and was distressed by her dying friend’s toxic responses to her. This brought back many memories of when I was a medical social worker at UCLA Medical Center on the oncology and ICU floors. During that time I was requested to intervene many times when the medical staff could no longer handle the behavior of the dying patient or their family.
       My friend’s experience with her dying friend is not unusual. The process of dying is a complicated journey requiring enormous patience, understanding, support, and courage for the person leaving this planet as well as the loved ones left behind. Buddhism, whose central philosophy is focused on death, describes dying it as one of the four great sufferings. There have been countless books written on death. However, it is another matter to confront the reality.
       I am no stranger to dying and death. Personally and professionally I know it from the inside out. Starting from when I was thirteen when I nearly died from a gangrenous appendix, I know what it is like to feel close to death. Had I not told my mother I was going to die if she did not get me to a hospital that day, I probably would not be writing these words. Immediate surgery saved my life. Ironically, a classmate of mine died the same year from the same diagnosis. Because of my overwhelmed mother’s lack of medical instinct, I made a vocational life in medically-affiliated careers to make sure this did not happen to me again. Nearly dying did have some benefits.
       In addition to having the experience of dying, I have also taken care of someone who eventually died from a metastatic brain tumor.  John, a psychologist friend of many years, lasted four years after being diagnosed at the age of thirty-nine. He fought his diagnosis and subsequent disabilities tooth and nail. Though I lived in LA at the time, I frequently was on the phone to him and his ex-wife (his healthcare and financial guardian) in Minneapolis about his shifting medical and emotional needs. He also went through a toxic period as described above by my woman friend.  At one point, he was being so difficult that I told him if he continued down this path no one would take care of him when he lay dying. Tough words needed to be spoken. Fortunately it changed his attitude and bonded us closer together. During the last week of his life when he was in and out of a coma, I returned to physically take care of him until he died at his home. It was a daunting twenty-four hour a day feat to physically take care of my bed-bound friend, administer his meds, and watch his life ebb. The support I received from his ex-wife and other friends made it possible for John to die with love and dignity. To this day, taking care of John while he was dying was one of the most humbling services I have ever performed. I feel honored to have been with him at the end.
     On the other hand, my mother’s dying and death was a nightmare. At the age of fifty-eight, she had a massive stroke. My personal physician who saw her told me her condition was serious but I was unable to emotionally grasp his forebodings. After almost three days, she awoke from her coma unable to speak, utterly dependent on others for all of her care. My mother, who was a very verbal yet a privately independent woman, endured being trapped for weeks in her medical hell. My father, who had depended upon her, became almost psychotic. This threw the rest of my family in chaos. After two weeks of being hospitalized, she had a cardiac arrest. I made it to the hospital while the medical staff were resuscitating her. One of the things my mother told me prophetically about a month before she died is she never wanted to be placed on life support. The valiant hospital arrest team worked on her without a pulse for an hour, not wanting to give up because of her age. It is an absolute nightmare when you know what a massive stroke your mother had which was now compounded by the fact she had not been oxygenating for an hour. The implications became instantly horrific. I grabbed my father and said he had to stop this. He walked away insisting I needed to make the decision. The nursing staff brought me into the room where I had to tell the physicians working on her to cease. The visual impact of watching them stop resuscitating her lifeless body will remain with me forever. She had no chance of surviving this-both her medical team and I knew this. Never have I had to do anything emotionally as courageous as I did that afternoon. My only consolation is that my mother told me her wishes. But it was not in vain: I feel my mother’s death was what made me a compassionate and effective medical social worker. This experience has given me great empathy for family members who also are asked to cut off or limit life support on their loved ones.   
      As a former medical social worker I saw a number of patient’s go through the process of dying. They and their loved ones dance the last dance with myriad of emotions, never in syncopated time. It is an art to process with a dying person and their loved ones a life’s worth of cemented patterns, unique circumstances, differing opinions, and a tsunami of conflicts. This is why I have a Buddhist bent and encourage everyone to talk honestly about death with their loved ones now. This falls frequently on deaf ears. Almost everyone is deluded thinking they have time. We are mired in superstitions about death, thinking we are morbid if we speak about it or consider it jinxing fate. For those who do risk the somber discourse, it is an uncomfortable subject to broach. To all of those squirming at this thought, I will say I am grateful my mother divulged her wishes to me before she died. Had she not, I may have endured a life’s worth of guilt whatever decision I rendered that day.   
    

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