However, the structure, incentives, and culture of the system in which they work are often-perhaps usually-poorly aligned to support their efforts to respond to patients' needs as their core priority. Alvin's case highlights the critical importance of all members of the care team-family members, clinicians, and other health care providers-working together to overcome system complexity and poorly aligned incentives to ensure patient-centered care, as well as the ways in which the health care system falls short on this critical dimension ( Winakur, 2012).Ĭlinicians and health care staff work tirelessly to care for their patients in an increasingly complex, inefficient, and stressful environment.
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After he passed away, a hospice nurse finally arrived, apologized, and instructed his family on how to dispose of the remaining vial of morphine correctly. Since it was a Saturday evening, hospice personnel were off duty Alvin's family had to arrange for a private-duty nurse to help them care for him in his final hours.
Five hours after leaving the hospital, Alvin was in pain and struggling for breath. Trying to honor his wishes, the family refused. The emergency medical technicians who took Alvin home offered only one solution-to bring him back to the hospital. Despite the hospital's orders for oxygen to be sent home, Alvin's family found that the oxygen supplied was insufficient for his needs. His family was given a prescription for morphine with little instruction on how to use it appropriately when they tried to fill the prescription, several pharmacies refused. Faced with the choice of intubation and a mechanical ventilator or palliative care, Alvin chose to forgo life support and spend his last days at home with his family. His doctor, a specialist in lung disease at a top academic medical center, gave Alvin 100 percent oxygen and powerful antibiotics and steroids, but his condition quickly deteriorated. In June 2011, Alvin, a terminally ill patient with end-stage pulmonary fibrosis, was hospitalized for pneumonia.
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