Death has always been a family affair. But the metamorphosis of death has changed the role family plays as patients undergo a protracted dying. People these days, as they prepare for their retirements, frequently become the primary caregivers of their parents, given how much longer people live. In spite of great changes, few deaths occur in isolation, and in that, death affects many who surround the dying.
Ostensibly, all hospital rooms look the same. Same white sheets and towels, stock photos and soft boards on the walls, bags of saline and IV tubing hanging by the side. Patients, too, end up looking identical, with their light blue johnnies, slip-resistant slippers, and hospitalization hair—when patients’ hair starts to stand up straight after they’ve remained chronically bedridden. Their doctors, too, look the same, with their lab coats with pockets stuffed with pens and papers, scrubs with pagers at their waists, leaving patients confused about who their doctors actually are as people. But when I look hard enough, and pay enough attention, there is much I learn about my patients just by what their rooms look like.
There are some patients who bring barely anything with them but their own person. This usually means two things: Either the patient came to the hospital emergently or the patient is not used to being admitted to the hospital. The only reason I know this is that I have witnessed how well prepared patients who frequent the hospital are. Just looking around their room, looking at the spare pajamas, the snacks and the shampoos, one can tell that their pathologies have transformed them into “professional patients.” Some of them keep diaries that detail every aspect of their health, charting how much urine they made every day, how many bowel movements they had, what their blood pressure or blood glucose level was, among other vitals and variables.
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On the bedside tables, clues are frequently strewn. Religious totes such as little baby Jesus figurines or menorahs give insight into patients’ spiritual lives. The choice of books people bring with them can also be illuminating; many cancer patients read books written by survivors. If it is a book I am familiar with, I frequently talk about it. On the walls, or on the soft board, other clues can be found. Cards from friends and family members can key one into a patient’s social net- work. Pictures present a window into a day in the life of the diseased—usually happy, smiling, and surrounded by those who are important to them.
When I walked into Christina’s room, my eyes first darted to the framed picture of her wedding that sat next to her bed. Having worked all her life in the government as a clerk, she was in her late thirties when she met and fell in love with her now husband. They had known each other for years before tying the knot. Shortly after the wedding, though, Christina had started to lose a lot of weight. An MRI revealed a tumor in her ovaries; she had her uterus, fallopian tubes, and ovaries removed surgically, but remnants of the tumor remained and kept growing. After her first chemotherapy treatment failed, the tumor started to block her intestines. She was now in the hospital on second-line treatment—a newlywed fighting for her life.
Looking at her, though, you wouldn’t be able to tell what she had been through. She was the brightest person in the room, always optimistic and never complaining. The physicians and nurses actually had to coax her to let us know when she was in pain. She didn’t want to be a bother, she told us. Her smile in the room was no different from that in the wedding picture from less than a year ago. But she was just half the wedding picture. The other and increasingly important half was sitting in the bedside chair, sometimes waiting in the family room or anxiously walking the lengths of the hallways, fighting to get answers. That other half was the patient’s spouse, the primary voice of extended family and loved ones. More than through anything else in a patient’s room, one learns most about patients through the brave guardians at their side.
While Christina, through perhaps the strength of her goodness, managed to remain cheerful through this ordeal, even as her hair fell like flakes and she suffered from ever-worsening blockages in her gut, her husband was less unshaken. He had the look of someone weathered with fear and anxiety, but at the same time trying his best to be there for his wife, willing her along this painful and ultimately doomed journey.
So if you just look hard enough around a patient’s room, you get to learn by seeing, but if you also attend to the relatives and friends in a patient’s room, every patient starts telling a different story. At the same time as Christina, I was also taking care of an old gentleman with Alzheimer’s dementia, who the night before had fled his retirement home on a motorized scooter, and was found on the freeway after his fuel ran out. When I met him in the morning he was very solemn, to the extent of almost being mute. Yet when his grandkids came to the room, in their colorful clothes and accompanied by their parents, his face lit up. It turned out that the night before, he had missed them so much that, in a bit of dementia-induced delirium, he had embarked on his scooter hoping to reach them.
Since primordial times, family has served as the purveyor of care and comfort for the sick and debilitated. Modern caregiving, though, has little if anything in common with the care families have provided their sick loved ones in the past. Caregiving these days has become increasingly demanding and has resulted in the emergence of the second victim—the family member spending long days and nights giving intra- venous antibiotics, filling bags of tube feedings, changing diapers, buying medical equipment, at times with no end in sight. Few deaths in history ever occurred in isolation, but more than ever before, today death touches all those around it.
From Modern Death: How Medicine Changed the End of Life by Haider Warraich, M.D. Copyright © 2017 by the author and reprinted with permission of St. Martin’s Press, LLC.
Dr. Haider Warraich graduated from medical school in Pakistan in 2009. He did his residency in internal medicine at Harvard Medical School’s Beth Israel Deaconess Medical Center, one of the main teaching hospitals of Harvard Medical School. He is currently a fellow in cardiology at Duke University Medical Center. His medical and Op Ed pieces have appeared in many media outlets including The New York Times, The Atlantic, the Wall Street Journal, Slate, and the LA Times, among others.