As an intensive care physician, I know how hard it is to judge the right amount of treatment that patients want and need. Diagnostic uncertainty and the limitations of treatments combine to create a degree of uncertainty around the decisions that we make as clinicians.
The classic children's story "Goldilocks and the Three Bears" holds important lessons for modern medicine. The three bowls of porridge — one too hot, one too cold, and one just right — represent the range of scenarios for hospitalized patients.
Because they are underinsured or live in remote areas with limited access to providers and services, many Americans don't receive enough health care (too cold). At the other end of the spectrum, patients often receive too much care (too hot). The intensive care unit (ICU) is the setting where patients receive the most intrusive and costly care — treatments that can be lifesaving but too often prolong life without enhancing the quality of a patient's remaining time.
Physicians often don't know our patients' wishes about the intensity of care they desire, and neither do their families. We are strongly influenced by outcome bias: If everything turns out well, we made the right decision; if it doesn't, we didn't.
As part of the 2013 study "Perceptions of the Appropriateness of Care in California Adult Intensive Care Units," we surveyed doctors and nurses in 56 adult ICU units. One of the driving principles behind this study was to examine whether these health care providers perceived a disconnect between the patient's wishes and the intensity of treatment doctors administered based on the prognosis at the time.
After surveying nurses and physicians, we estimated that up to 30% of patients were receiving excessive treatments. More than half of respondents found these situations distressing, but most (68%) did not believe that they possessed the power to change them. In our study, only 27% of patients had completed an advance directive that could have ensured their desired course of treatment.
Several respondents pointed out that "care" can never be inappropriate, only "treatments" (the amount, invasiveness, or duration). That is true. Caring is the gift we provide to those in time of need. The results show that ICU staff want to do better at providing the "just right" level of care, and there was strong support for measures to reduce inappropriate treatment, including formal communication training and mandatory family meetings.
It is important to discuss the limitations of this study because they provide directions for future research. Objectively measuring appropriateness in the ICU is difficult. We solicited health care providers' perceptions, and while these are the opinions of highly trained professionals, they are only their opinions. We were unable to assess whether all staff concurred about these situations.
More importantly, we are also missing the patient or family members' perspectives and the outcomes for the patients. However, I believe the results strongly signal that modern medicine has difficulty in acknowledging its limitations.
Another survey found that doctors choose to provide high-intensity care for terminally ill patients but would not choose that care for themselves at the end of life. Without information about patient wishes, such as is provided in an advance directive, the default option in medicine is to treat first and ask questions later.
The work of the California Health Care Foundation and others in promoting advance care directives and Physician Orders for Life-Sustaining Treatment (POLST), and urging people to talk to their loved ones about their wishes for care is an important step to changing this default.