Mother, May I?
2007; Wolters Kluwer; Volume: 29; Issue: 23 Linguagem: Inglês
10.1097/01.cot.0000310393.03495.0f
ISSN1548-4688
Autores Resumo“You may take five giant steps,” my big sister yelled. “Mother, may I?” I called from the other end of our backyard. “No! But you may go back two baby steps.” This children's game was one of my favorites, until I realized the outcome had nothing to do with skill or luck. Disturbed by activities that nurtured tyrannical tendencies, I stopped playing and all but forgot about mother-may-I until 30 years later. A few months into my first course of chemotherapy, one of my girlfriends was helping me at home while my husband was teaching his Tuesday evening class. I remember watching Judy, standing with her back to the upright piano and ordering my three little ones on the other side of the room. “Becky, you may take five giant steps,” Judy said. A voice in my head mimicked her inflection, “Wendy, you may take five giant steps and start seeing your patients again.” “Mother, may I?” my daughter asked. My imaginary “me” asked, “Doctor, may I?” “No! But you may go back two baby steps.” “No, but you may go back to the chemoclinic.”Figure: Wendy S. Harpham, MD, (www.wendyharpham.com) is an internist, cancer survivor, award-winning author, and mother of three. Her books include “Diagnosis: Cancer,” “After Cancer,” “When a Parent has Cancer,” (selected as a #1 Consumer Health Book by the American Journal of Nursing), and, most recently, “Happiness in a Storm.” She lectures to professional and lay audiences on issues centering around “Healthy Survivorship,” including recovery and late effects after cancer, raising children when a parent has cancer, clinical trials, and finding happiness in hard times.It is no fun when cancer shatters illusions of control. For me, a solo practitioner, the crash was humbling. Over the years, my delusion of control had grown stronger each time nurses followed my orders, pharmacists filled my prescriptions, and patients' illnesses yielded to my therapies. Until my diagnosis—and I'm embarrassed to admit this—a little part of me actually believed I'd willed my labors and deliveries to occur on my days off, as I'd promised my patients throughout my pregnancies. My distress over losing control wasn't an aberration. Many people who are newly diagnosed with cancer suffer from a mildly unsettling to an utterly disabling sense of loss of control over their body and their world. At the very least, patients have to be where you tell them when you tell them, and then they have to do what you tell them the way you tell them. Just for a moment, imagine lying still in a scanner's coffin-like donut hole on an unyielding flat surface—euphemistically called a scanner “couch”— and being commanded to “Take a breath. H—o—l—d it. Breathe.” In situations where cooperation and compliance improve the chance of recovery, giving up control helps patients regain control. As a patient, I understood that, intellectually. I believed it, too. But the emotional cost was great. Even the littlest, silliest loss of control could be upsetting, such as the time I was carrying a lawn chair to one of my kids' sports games. One parent said, “Wendy, let me carry that for you,” and another just started grabbing the chair from my hands, commanding, “You shouldn't be carry that!” The unintended consequence of their noble actions was to strip me of my autonomy at a time when I was feeling innumerable losses and was trying to hold onto one side of me that was not “a patient.” Instead of feeling comforted and relieved, I felt more anxious, “Do I look too sick to carry a lawn chair? Am I too sick?” An essential element of quality care is restoring and maintaining patients' sense of control. Years ago, a survivor in my support group told a true story of an angel who knew how to do this. The man's story begins when his oncologist—a colleague of mine named Gabriel—starts to leave his hospital room at the end of a visit. “Hey, Doc, would you mind leaving the door open a little?” he asks. Obliging, Gabriel adjusts the door, leaving it open a few inches before he walks away. As the storyteller described it to me, “Ten seconds later, my doctor returns, peeks his head into my room and asks, ‘Is this okay?’ He then playfully opens the door an additional three inches, ‘Maybe, this is better?’” and then closes the door an inch, teasing, ‘Better now?’” The patient was not only amused, which was the oncologist's primary aim, but also comforted and strengthened by the many messages of this simple act: I care about you to the inch; You are in charge of this; You are worth my time and effort. Early in my survivorship, I realized that whether we were talking about how I used my time or what I ate or when I went to sleep, I needed others to let me hold onto control of things that were well within my grasp and to ask me permission before helping out or taking over. When caring for patients, health care professionals have countless opportunities to make requests instead of demands—“Would you like to sit up by yourself, or would you prefer some assistance?”—and to ask permission before proceeding. This notion is particularly important when patients are dying and their world is gradually and inexorably contracting. I'm reminded of an ancient prayer: Please don't let me die before I die. From the moment of diagnosis on, health care professionals take a giant step toward healing by preserving patients' autonomy when possible and reasonable. Many times, all it takes is a simple, “May I?”
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