Barbara A. Chernow, PhD (Columbia University), is the founder of Chernow Editorial Services, Inc., a company that produces medical and professional books for publishers worldwide. She has also edited many reference projects, including the Columbia Encyclopedia, is the author of Beyond the Internet, and has taught at NYU and the New School. She published an article, The Other Side of Grief, in the Brooklyn Quarterly .
Respect the right of a patient with cancer to decide against treatment or to reach a point where fighting the disease is no longer worth the suffering.
In 1965, two years after my mother underwent surgery for a maxillofacial tumor, I woke to find her softly weeping. She had been through a difficult week at the prosthodontist. By now it was clear that excision of the tumor had required such a large removal of bone that the weight of the prosthetic device was too much for her remaining gum and teeth to support. The present was difficult; the future offered little hope of further improvement. Reality had set in.
That morning she shared a story. Prior to her surgery, one doctor — a psychiatrist — asked if she truly understood what was going to happen and if she understood the extent of the removal and the postsurgical issues. He gently suggested that she consider accepting palliative care and then letting go. She had never weighed such an option. It ran counter to her maternal instincts, to her love of family, to her desire to be there for us and to share with us. It was an alien concept in our world in the 1960s; no one chose to die. Although scared, she was a fighter and believed, as surgeons had told her, she would be able to function again and that her physical appearance would be acceptable.
But “function again” and “acceptable physical appearance” are subject to interpretation. Her doctors’ definitions were not hers. Quality of life is relative; every patient has to define it personally. She had trouble eating, sleeping, breathing and talking. She looked different—and it never healed. Both she and my father thought her doctors meant she would come back to herself; they were both overwhelmed when they discovered she never could.
She regretted her decision to undergo surgery. The psychiatrist had been right, she concluded. She should have taken palliative care. It had all been too much. The strain on her, the strain on the family and the never-ending discomfort. Although she experienced many joyous moments, her suffering continued for 33 years, only to culminate in a second bout of an even more devastating oral cancer that took her life.
Today, patients have more options for learning about their illnesses and a wider range of successful treatment options. They consult with a variety of medical specialists and can discuss outcomes with survivors, who can share experiences and who understand that meaningful outcomes include acceptable quality-of-life functioning. Accepting palliative care is no longer seen as a decision to die. It has become a medical specialty, a recognized option for relieving pain, treating symptoms and side effects, and providing emotional, spiritual and educational support to patients facing quality-of-life illnesses. Such care is given in addition to cancer treatment. Not all palliative care means terminal care, but hospice is the next step if a patient reaches the point where treatment can no longer destroy the cancer. Palliative care can help the patient transition to end-of-life care.
Respect the right of a cancer patient to decide against any treatment or to reach a point where fighting the disease is no longer worth the suffering. Their reasons can include age, medical history and risks, religious beliefs, an understanding of postsurgical quality of life, or simply frustration with continued treatment that is resulting in no improvement. Realize that the patient, family and caregivers are all experiencing a range of emotions from anger to frustration to sadness. Focus not on the end, but on making the most of the remaining time you share together. It took me many years to admit that my mother was right.