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The Longest Pain: The Suffering of Children with Cancer

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A Rest in Peace


August 1, 1999
Palliative Care
A Compassionate End of Life
By J. Kevin Shushtari, M.D.

What is palliative care? You've probably never heard of it, and just as likely your physician hasn't studied it. Palliative care is end-of-life care, the humane and compassionate treatment of the dying patient and the loved ones they leave behind. In England, palliative care has long been a specialty, but in the US, medical schools have only recently begun including it for study. My experience as a doctor has led me to work with many dying patients, and through them I learned to appreciate the importance of quality of death.

Here in this section of Rx.magazine, we would like to cover the many issues surrounding this needlessly controversial subject, from emerging thoughts regarding hospice care and home care, to medicines for pain management and news of medical professionals making a difference in this area. It is our goal to bring you more information about this important medical field so that your choices, and those of your family, will be more loving in the end.

I'll never forget the first time I saw a patient die badly. I was a medical student doing a rotation in oncology. A thirty-five year old woman was diagnosed with breast cancer that had spread through her body. All treatment options, including surgery, chemotherapy, and radiation, had failed and she had requested that when the time came, she be DNR, which means, "Do Not Resuscitate." The senior resident told the husband there was nothing further we could do. I was the medical student assigned to her case, and every morning the attending physician asked the same question. "Is she still hanging on?"

One morning, as the medical team discussed a treatment plan for another patient, one of the oncology nurses came running down the hall yelling that Kim, our patient with the breast cancer, was in respiratory distress. What I saw when I walked into her room I will never forget. Kim was sitting stiffly upright, bald from the chemo, clutching her breathing mask with both hands. Her shoulders and chest, wet with perspiration, heaved with each attempted breath. Her eyes were huge, and she looked like a scared animal as she begged to be saved. "Please, I don't want to be DNR! I want to live! I changed my mind. Do something, please! I have kids!"

In the corner stood her husband, Max, who was totally spent emotionally and physically from his family's year-long battle with breast cancer. He wanted the end to come but couldn't bring himself to say it. Jack and Jessica, the family's five-year-old twins, buried their tear-stained faces into their father's thighs as they stood in the corner with him, their backs to the white-coated team. "She's completely delirious," argued the senior resident. "She can't change her code status now," meaning she would remain DNR. "Give her two milligrams of Valium and call the hospital chaplain," he ordered as he walked out, the team in tow.

Kim couldn't be saved, but she didn't need to die like that. She could have died peacefully, without so much physical and emotional pain, and without respiratory distress. Her family could have been counseled and comforted. But like many physicians, the senior resident that day did not know about palliative care. It is something that until recently has been totally lacking in American medical education. During my training, I, like everyone else, learned mostly about diagnosis and treatment, never how to effectively care for patients pain once they can't be saved.

To me, pain and suffering are medical emergencies just like heart attacks and ruptured aneurysms. Yet the medical literature is filled with statistics showing that physicians historically under-treat pain, particularly when narcotics are involved. I recall on numerous occasions throughout my career hearing doctors say they did not want to make "addicts" out of their patients; they often said this when their patients had only days to live.

I once had a part-time job at a state hospital where I was the only physician on the Palliative Care Unit. I barely knew what palliative care was. My teachers there were the nurses. Although I had a firm grasp of most illnesses and although I knew the mechanism of action of morphine, one of the mainstays of palliative care, I learned from the nurses how to treat a dying patient with dignity.

On the Palliative Care Unit we used a multidisciplinary team approach that attempted to address all the concerns of a dying patient. There were nurses, a psychiatrist, a chaplain, a social worker, a psychologist, a nun, an activities coordinator, a physical therapist, an internist (me), even a massage therapist. We all sat at a big table and, one by one, discussed the various issues affecting each patient. There were bereavement support groups in the evening for loved ones, which the same team members attended. Palliative care is more than the compassionate treatment of physical pain; it encompasses all aspects of an individual's life.

One night I was working late trying to finish all the paperwork associated with treating patients. I heard loud music and giggling coming from Pam's room at the end of the hall. Pam was a thirty-year-old woman who had contracted HIV from her husband, who was an IV drug user. She was dying of AIDS and would be leaving behind a nine-year-old daughter. She had spoken frequently of making a video for her daughter in which she would discuss puberty, dating, fiscal responsibility, and the like - all the things she felt a mother should teach a daughter. But each time she tried to make the video, she broke down in tears.

That night the nurses did her hair, helped her with her make-up, and threw a "girls-only" party. When I stuck my head in the door, Pam was giggling and explaining about getting her menstrual period for the first time. She was in the glare of the video camera. Everyone turned toward me and yelled in unison, "Girls only!" During that party, Pam was weak and debilitated, but she was dying with dignity, thanks to the special care she was receiving. Although we could not change the tragic circumstances surrounding Pam's illness, we were able give her what I believe everyone deserves: a good death.