It started, as it does for thousands of women every year, with a routine mammogram, and its routine process of having my breasts — like a lump of dough — manipulated by another woman’s hands and placed, albeit gently, into tight compression. It’s never comfortable, but you get used to it because you have to.
Unlike previous years, though, my next step was a biopsy, for which I lay face down, my left breast dangling through a hole in the table. Several hands reached for what’s normally a private and hidden body part and moved it with practiced ease, compressing it again into position for the radiologist’s needles, first a local anesthetic and then the probes needed to withdraw tissue for sampling.
I was fearful of the procedure and of its result and, to my embarrassment, wept quietly during the hour. A nurse gently patted my right shoulder and the male radiologist, seated to my left and working below me, stroked my left wrist to comfort me. I was deeply grateful for their compassion, even as they performed what were for them routine procedures.
The following weeks gave me a diagnosis with a 98 per cent survival rate: ductal carcinoma in situ, a condition that is not even considered a cancer by some. The diagnosis began a disorienting parade of more unfamiliar people touching my body, from routine blood drawing to a transvaginal probe (to determine my baseline uterine condition because estrogen inhibiting drugs can cause uterine cancer), to injecting a tiny electromagnetic wave device into my breast to guide the surgeon to the tumor’s exact location.
At midlife — apart from four orthopedic surgeries, three of them minor — I’ve been healthy, so my body had never before been so intimately and medically handled. Having someone puncture your breast isn’t quite like getting a cortisone knee injection.
Some of the procedures, some done with a local anesthetic, were uncomfortable, some downright painful. The thoughtfulness with which I was touched — all at suburban New York hospitals — made a real difference in my ability to stay calm and lie still as needed. My anxiety, even as a middle-aged adult, wasn’t just an annoyance to be ignored or dismissed.
And, as someone from a family that shows little physical affection, it was also surprising, pleasantly so, to be hugged by my surgeon when she delivered good post-op news and by a phlebotomist whose technique drawing my blood without the usual tourniquet was so deft I felt nothing.
TOUCH IN THE MEDICAL PROFESSION
Touch during medical procedures can be soothing or traumatising. It can be gently and compassionately administered; alternatively, it can be roughly, carelessly or even, at worst, incompetently handled.
“Many patients feel that being touched is important to getting better,” said the historian Paul Stepansky, author of In the Hands of Doctors: Touch and Trust in Medical Care. His father was a small-town general practitioner in Pennsylvania, and Stepansky saw firsthand the effect of those personal relationships. “Medicine then was all about touching, and patients welcomed their touch,” he said. “It was integral to doctoring, and partly because physicians were part of the community, medicine was about the laying on of hands.”
Now, in an era of electronic medical records, when physicians can spend most of an appointment staring into a computer screen, physical connection between doctor and patient may prove even more important. “Touch promotes trust,” says Stepansky, “not just talking or ordering studies.”
Others have passionately argued the case, like Dr Abraham Verghese’s push for more human touch in medicine. Verghese is a professor at the School of Medicine at Stanford University. His 2011 TED Talk in Edinburgh urged the audience to rethink clinical medical practice: “When we shorten the physical exam, we’re losing a ritual that I believe is transformative, transcendent and at the heart of the physician patient relationship.”
A physician’s role, he said in his talk, is “to touch, comfort, diagnose and bring about treatment.”
Patients with a chronic illness may spend decades, literally, in dozens of medical hands. Natasha Walsh, a political consultant in Alexandria, Virginia, who has Crohn’s disease, said she has experienced care both comforting and cold.
“I know there are patients who bristle at being ‘manhandled’ or poked and prodded, and after being sick for 20 years, that doesn’t bother me at all,” she said. “I have doctors who I’ve had a long relationship with who I feel comfortable enough to hug or be otherwise chummy with, so in those cases I absolutely feel comforted by their touch, just as I would a friend’s.”
Once, in the intensive care unit at Washington Hospital Center, “after a bowel resection gone horribly wrong, I’d gone completely septic and I had been in a medical coma for about a week and woke up and had no muscle tone at all,” Walsh recalled. “I could barely roll over. So one of the male nurses would wheel my gurney to the CT scan or MRI rooms and had to physically pick me up and roll me into position, and I remember thinking how overwhelmed with gratitude I was for his strength and how gently he handled me.”
Yet she gave up on another local physician, a gastrointestinal specialist, “because he never once physically examined me. He was almost too clinical.”
Part of patients’ challenge is not knowing how every physician, nurse and medical technician will treat them, even as we’re in pain and already anxious, feeling vulnerable. And survivors of sexual abuse or assault can cringe at the lightest of touch.
"It should be a two-way conversation about what you’re comfortable with,” said Susan Finlayson, a registered nurse and senior vice president of operations for Mercy Medical Center, a 178-bed university-affiliated Catholic hospital, founded by the Sisters of Mercy, in Baltimore.
Finlayson knows their local population well, one that is poor and underserved, and trains staff members to treat them with dignity. “When nurses come in here to work, we talk a lot about our values — treating the mind, body and soul,” she said. “Patients arrive because something very tough is happening in their life, so from day one we make sure that every new group we orient here understands that and offers them patient-centered care.”
While patients need and deserve gentle, thoughtful treatment, “health care is evolving, and has gotten more businesslike,” she said. “We’re pressured to do more and more and to give better value at lower cost. It’s easy to get caught in that to-do list. It’s easy for staff to get burned out.”
HANDLING IT WELL
As patients also navigate the additional obstacles of who accepts their medical insurance, they can end up being treated less than ideally. Can they expect consistently kind and compassionate care wherever they end up? “In theory, yes,” said Finlayson. “In practice, no. There’s so much variation in hospital culture, administration and leadership.”
Every patient needs a strong advocate to make sure to be touched and handled with kindness and competence, said Mickey Osterreicher, a Buffalo lawyer whose medical journey began in 2011 with a diagnosis of prostate cancer but later included the removal of a malignant melanoma and its metastasis to his brain. A life-threatening drug reaction required even more interventions.
Along the way, he lost 40 pounds of muscle, making it more difficult for nurses to draw his blood — “the one thing I’d always taken for granted as being easy,” he said. “But some people are really good at it and I didn’t feel a thing, and other times it really hurt and left me bruised.”
He wasn’t afraid to challenge his physicians, noting that some people are intimidated to do so if they feel their treatment is too rough. “Certainly as a patient you have every right to speak up. Certainly, some doctors weren’t happy when I did and bridled at criticism.”
While still facing quarterly MRI and PET scans, he is healthy today. His best advice for getting the kindest care possible?
“Have a family member who can be diplomatic.”
By Caitlin Kelly © 2018 The New York Times