Health & wellness

IN PRACTICE

Families of patients need some attention, too

Dan Page for The Boston Globe

My patient, Alyson, had been in labor for several hours when a nurse arrived for the evening shift. The nurse introduced herself to Alyson and her husband, Ryan, and asked them to remember two things: First, the nurse said, she was there to give all her attention to Alyson and her baby - no one else. Second, no matter what happened, if they saw her smiling they could be sure that everything was OK.

What happened next made both of those well-meant statements impossible to forget.

Ryan was asked to wait outside the delivery room while Alyson received epidural anesthesia. Some time later, he was still waiting there, unsure of what was going on but aware that something was wrong. Scrub-suited medical personnel rushed into the room with a crash cart.

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Later, Ryan learned that after Alyson’s epidural was placed, she began having trouble breathing and the baby’s heartbeat became irregular. Within minutes, doctors put a tube down Alyson’s throat, administered general anesthesia, and performed a caesarean section.

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The baby, a beautiful girl, was healthy. Alyson was fine, too. The next day, as she was recovering from surgery, her nurses and doctors spoke with Alyson about what she’d experienced. They acknowledged that all the commotion in the delivery room must have been very frightening for her and assured her that everything had turned out OK.

But none of the doctors or nurses ever acknowledged that Ryan’s experience, waiting outside the delivery room, was, in some ways, even more traumatic than his wife’s. After all, Alyson told me recently, at least she knew what was happening - and she was knocked out for most of it. “But Ryan,’’ Alyson said, “thought I was dying.’’

For months after his daughter’s birth, Ryan couldn’t shake his anger: at the way the delivery had gone, at being kept in the dark, at the medical bills that appeared for a hospitalization that was nothing like the joyful beginning of their new family he and Alyson had imagined.

Should the nurses and doctors who cared for Alyson and her baby - saved their lives, really - have taken care of Ryan, too?

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When people are ill or injured, those closest to them suffer. Some of this collateral damage is emotional - fear, sadness, rage, loneliness, and guilt are common - but it can also be physical. Exhaustion and self-neglect take their toll, particularly when the loved one’s illness goes on for a long time.

The National Family Caregivers’ Association, an advocacy group, estimates that there are 65 million Americans providing care for a family member such as a chronically ill spouse, elderly parent, or child with special needs. About a quarter of these report their health as “fair to poor,’’ over half say their diets and exercise habits have deteriorated since their care-giving responsibilities began, and three-quarters don’t regularly keep their own medical appointments.

A 2006 study from Beth Israel Deaconess Medical Center showed that a wife’s hospitalization increased her husband’s chances of dying within a month by 35 percent and a husband’s hospitalization increased his wife’s mortality risk by 44 percent.

Mental illness, dementia, and brain injuries cause additional pain to family members because they limit people’s ability to reciprocate the support they receive. These conditions can become skewed axes around which a whole family revolves, even causing caregivers to question their own grip on reality.

Poet and activist Rose Styron eloquently described how she felt when her husband, novelist William Styron, developed severe depression. “I felt a strangeness come over our relationship,’’ she once said, implying that her spouse’s mood disorder had somehow swallowed up her decades-long marriage as well.

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There are resources for those affected indirectly by illness and disability. Organizations such as Al-Anon (for friends and family of alcoholics), the Alzheimer’s Association, and many others provide support and information. The Family and Medical Leave Act, passed in 1993, guarantees job protection for 12 weeks unpaid leave within a 12-month period if an employee needs time off to care for a family member.

And, of course, neighbors, friends, and religious communities often step in to relieve family members dealing with the physical and emotional burdens of care giving.

But, even the most sympathetic friends and relatives may be unable to offer much beyond platitudes. Writer Aleksandar Hemon recounted in an essay in the New Yorker that when their baby daughter was being treated for a malignant brain tumor, he and his wife “much preferred talking to [the doctors] who could help us understand things that mattered, to being told to ‘hang in there.’ ’’

So why aren’t physicians more attentive to speaking with patients’ family members? Lack of time, certainly, and also concern about violating a patients’ privacy - especially since the 1996 passage of the Health Insurance Portability and Accountability Act (HIPAA), which deals, in part, with the confidentiality of medical information.

Perhaps because of HIPAA, some patients’ families no longer seem to expect such attention. A patient of mine whose husband has lung cancer recently told me that she was shocked when his oncologist called to find out how she was holding up.

And yet, hearing Alyson’s story, I found myself thinking about the number of times I reduced the suffering of a patient’s family member by acknowledging it - and the number of times I may have failed to do so: the harried, middle-age woman who brings her demented mother in for a checkup, the anxious parent banished from the exam room by his or her young adult child, the wife who knows her husband won’t tell me about the symptom that’s keeping her up at night worrying.

Looking back on the delivery of her daughter, Alyson felt the medical staff who simply spoke with her about what she’d been through aided her recovery. “I just wish,’’ she told me, “they could have done the same for Ryan.’’

Dr. Suzanne Koven is a primary care internist at Massachusetts General Hospital. She writes a monthly column about the uncertainties, dilemmas, and stories that patients and doctors share in practice. Read her blog on www.boston.com/health. She can be reached at inpracticemd@gmail.com. Her website is www.suzannekovenmd.com