White sand beaches and sweet-scented leis are the tropical images most people conjure of Hawaii. Now it is conceivable that the Aloha State will help untangle the Gordian knot of end-of-life healthcare issues.
We know the statistics: Most Americans die in hospitals even though most prefer to die at home; nearly 1 out of 3 Medicare dollars are spent in the last six months of life, much of it without significant survival benefit; and hospice care remains underutilized despite an increasing number of studies suggesting it prolongs life and improves quality of life.
As the Institute of Medicine recently concluded, end-of-life care in this country is largely broken and in desperate need of an overhaul. A yawning gap exists. Doctors are expected to be end-of-life communication experts, but it is not integral to their medical training.
Looking toward a solution, an unprecedented coalition of competitors—major hospitals, nursing homes, hospices and insurers in Hawaii—agreed to a three-year project to change the culture of end-of-life care in the state. They made it a priority for patients, families and clinicians to have conversations about end-of-life care before getting sick. There was a general recognition in the Hawaii medical community that patients' wishes were not being honored and respected. Most patients surveyed in the state preferred to die outside of hospitals and in comfort, but most were dying in healthcare institutions, often tethered to machines and in pain.
As a result, the major healthcare organizations agreed to shift resources from aggressive end-of-life care toward intensive conversations on advance care planning.
The not-for-profit Hawaii Medical Service Association, a Blue Cross and Blue Shield health plan, now trains hundreds of clinicians across the state to have these conversations with patients and families and many have become master communicators. Doctors, nurses, social workers and chaplains are slowing down and asking patients: What kinds of things are important to you in your life? If you were not able to do the activities you enjoy, are there any medical treatments that would be too much? What fears do you have about getting sick or receiving medical care? Do you have any beliefs that guide you when you make medical decisions?
Hawaii uses how-to educational videos to teach people about their medical options at the end of life and what questions to ask, helping to empower them to make their own healthcare decisions. The videos have been translated into all the major languages spoken in the state, including Chinese, Japanese, Illocano and Tagalog.
Pioneering efforts are also underway to provide seriously ill patients with what's called supportive care, where patients receive life-prolonging interventions along with hospice care. In most of the country, tapping into your hospice benefit often means forgoing treatments with curative intent. Remarkably, insurers are working together to ensure providers are reimbursed for such care, putting the patient truly at the center of care.
During one visit to Hawaii, I interviewed a physician from a nursing home who had recently admitted an 89-year-old grandfather who had been shuffled from the nursing home to the hospital and back six times that year. On his most recent return to the nursing home, the physician started a conversation with him and showed one of the educational videos in Japanese, the patient's native language. After viewing the video, the patient said, “This is the first time that anyone has asked me what I want.” At the age of 89, with many medical decisions yet to be made, he was finally taking control of his medical care.
Tens of thousands of patients in Hawaii are taking back their healthcare. One of the first hospitals that initiated efforts to redesign care at the end of life was Hilo (Hawaii) Medical Center, which is in an area where about a fifth of the population lives below the poverty line. In only 18 months, the hospital has doubled documentation of its sickest patients' care wishes and has decreased deaths in the hospital by 30%.
If a resource-poor area can find a way to align care with patient choices, why can't the rest of us? We recently marked the fifth anniversary of the Affordable Care Act. Because many of its promises for patient-centered care remain elusive, we need innovative solutions to shake off old ways of thinking. However, sometimes old solutions are better. Let's encourage—and incentivize—clinicians to slow down like they used to and really listen to their patients.