Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [85]
Other patients hold fast to the principle of autonomy, even when faced with highly specialized and complex treatments. Some contend that knowledge gained from expert opinions, the Internet, and books about the condition and its remedies can give them enough information to retain their autonomy rather than relying on their doctors’ beneficence. Other patients may have experienced a misdiagnosis or medical mistake, an error in judgment on the part of doctors or nurses, an event that limited how much trust they could place in clinicians regardless of their reputation or character. Others feel that only a close family member or friend acting as a surrogate can truly imagine what their wishes would be under dire and rapidly changing circumstances.
Omar recovered from the infection and returned to work. But he found that he had no energy to review the data from experiments, no ability to focus on the final pages of the grant proposal. The cardiologist who was collaborating with him agreed to finish writing the proposal on his own.
A week later, Omar again developed a fever and then pain in his abdomen. Ayesha took him to the emergency room, and he was found to have another infection. This time it was peritonitis, an infection in the fluid in his abdomen. As Omar dozed off in the ER, the attending physician spoke to Ayesha. “His liver is deteriorating,” he said, showing her the printout of Omar’s blood tests. “And his kidneys are shutting down.”
Ayesha’s dark brown eyes welled with tears.
“We need to get him to the ICU. He is seriously, seriously ill.”
Ayesha told us, “We had been so hopeful, and expected that we would have six to twelve months to arrange everything.” Now, that time had telescoped to what might be a matter of weeks or even days.
By morning, Omar was comatose. The ICU doctors were infusing antibiotics and gauging the amount of intravenous fluid to give since his kidneys were not producing urine. Omar’s abdomen became more swollen and tense as the infection spread. Two days later, the news got worse. Omar was found to have not only a bacterial infection in his abdomen and bloodstream, but also a fungus. Fungal infections are especially hard to eradicate, and the antibiotics used to treat them, which are metabolized in the liver, are quite toxic, particularly to the kidneys. On the fourth day in the ICU, Omar began to bleed internally, a frequent complication of severe liver disease. The medical team transfused him and performed a procedure to try to seal off the bleeding vessels.
“I never expected things to happen that fast,” Ayesha told us. “But everything was changing within hours. He was in really bad condition, and it was too difficult for him to breathe on his own. So he had to be put on a ventilator.” The ICU doctors gave her papers to sign first to put him on a ventilator and then to start dialysis since his kidneys were failing.
“I just signed each paper,” Ayesha told us. She shared Omar’s trust and confidence in the transplant team and felt that the doctors were acting in his best interests. In this instance, there was no clash between autonomy and beneficence.
Not every surrogate is fortunate enough to know the doctors caring for a loved one. People incapacitated after a major car accident, a massive heart attack, or a stroke are rushed to the hospital, where their family members may be meeting the doctors for the first time. In such cases, when you don’t know the doctor and the doctor doesn’t know you or your loved one, it can be difficult to trust that he or she understands what the patient’s “best interests” are. This can result in an adversarial relationship between physician and surrogate. Surrogates may wonder, Are the doctors jumping to conclusions about my loved one’s prognosis? Are the hospital and doctors being pressured by insurers to limit costly care? If the loved one is elderly, do the doctors have an “ageist” bias; are they leery of providing intensive treatments for older people?
Some researchers have suggested that surrogates should share the narrative of the