by Kathleen Goodwin

I recently read the surgeon and public health researcher Atul Gawande's latest book, “Being Mortal” in which he writes about end-of-life care in the American healthcare system, which has developed into a series of increasingly radical attempts to postpone death, often at the expense of the comfort of patients during their remaining life. Gawande argues that doctors should refocus their goals on quality rather quantity of life. He advocates for physicians to educate patients about their healthcare options and then assist them in making informed decisions. A few weeks after reading Gawande's book my younger sister was hospitalized for 5 days with an acute case of bacterial pneumonia. An otherwise healthy 22-year old, she was not the type of patient considered in “Being Mortal” but I was surprised to find that many of the topics Gawande described appear to be relevant regardless of the patient's prognosis.

Some healthcare providers have acknowledged that empowering patients and reducing their suffering is a secondary concern in modern medicine and usually far from a priority. A doctor's main goal is to heal but in many cases this seems to lead to a sacrifice of a patient's autonomy and comfort, in the name of an eventual return to full health. It's a practical cost-benefit analysis— distilling years of medical training into layman's terms in order to explain a diagnosis, options for care, and the possible effects of procedures and medications with every individual patient would prevent physicians from having the time to see other patients and would net out to fewer patients healed. In terms of quantifiable success, a patient's experience in a hospital is measured by morbidity and mortality not by the comfort of her stay. Concurrently, in the U.S. healthcare system doctors are generally paid for services rendered and are incentivized to see as many patients as possible.

By the time my sister ended up in the hospital her breathing was labored, her oxygen levels were dangerously low, and the infection in her lungs had spread to her liver and gallbladder. While the nurses, doctors, and other hospital staff made an effort to monitor and ease her discomfort during the day, each night of her stay she was woken up every few hours to have her vital signs measured and to have blood drawn. These unceasing wake-ups would be annoying for anyone but for someone extremely sick, as most hospital patients presumably are, they were agonizing. My sister assumed they were necessary to optimize her doctor's knowledge about her condition and needed to be endured in order to hasten her eventual release from the hospital. I would have assumed the same if not for reading that Dr. Michael Bennick, the medical director for patient experience at Yale-New Haven Hospital, instructed his unit, “No more routinely awakening patients for vital signs. And plan the timing of medications; outside intensive care units, three-quarters of drugs can be given before patients go to sleep and again in the morning.” Bennick explains that in his unit the overnight blood tests were ordered by doctors expecting results in time for morning rounds, requiring pre-dawn draws from patients. He said to residents, “If you are waking patients at 4 in the morning for a blood test, there obviously is a clinical need. So I want to be woken, too, so I can find out what it is.” Patients in Dr. Bennick's unit were no longer woken up several times a night and they saw their ratings rise on Medicare surveys. It was a costless and simple intervention that increased patients' comfort and didn't adversely affect their health outcomes.

The other issue I observed was the lack of coordination between different doctors to whom my sister was referred and the resulting confusion. Tests were ordered by one specialist and then re-ordered by another. It was clear that the pulmonologist had not read the notes of the gastroenterologist and that neither of them had spoken with the original internist who admitted my sister or the staff at the on-campus clinic that she had originally visited when she became sick. In a New Yorker article from 2012, Gawande relays the story of a seventy-eight year old woman with early Alzheimer's who faced a similarly bewildering lineup of specialists, tests, and conflicting instructions after being hospitalized for a fall. Her son told Gawande, “It was as if the clinicians were the customers, and the patients' job was to serve them. 'We didn't get to go until 6pm [after being discharged at 10AM], with a tired, disabled lady and a long drive home.'” When my sister was discharged she and I both listened carefully to the instructions for follow-up care. Yet, later that afternoon when my mother asked us for details we argued over whether she was supposed to get a chest X-ray the following Thursday or in a few weeks and whether it was supposed to be reviewed by the pulmonologist or the internist. Even with two sets of attentive ears and a relatively straightforward case, my sister left the hospital with unanswered questions and confusing directives.

Medicine is an immensely complicated and constantly evolving field but there are some straightforward reforms that could significantly improve the patient experience. In many hospitals these are not considered because approaching healthcare from the perspective of the patient has historically been a foreign concept. The physician-patient relationship has some obvious differences from the typical service provider-customer relationship— the customer in this case is not “always right”. That oft-repeated advice is meant to maximize profit and while the patient is paying a physician for her services, presumably compensation is not a doctor's main goal in most healthcare transactions. However, I have to wonder if a patient were viewed more as a sentient consumer than a body to be cured, would the quality of healthcare improve? It feels repugnant to allow market forces to dictate healthcare but will it lead to better outcomes in the long run? As Gawande writes, “Nurses and doctors will have to get used to delivering care in which our own convenience counts for less and the patients' experience counts for more….All this will be an enormous upheaval, but it's long overdue”.