Now that the debate about physician aid in dying has mercifully ended, is there any oxygen left in the room?
A troubling aspect of the end-of-life debate was that it was dominated by an approach that only a handful of Californians will seek out. We need to focus on the harder work of change so the rest of us can live better when we don’t actually want to die.
In the four other states that approved aid in dying, only a few hundred have actually sought the assistance. California’s 200,000-plus annual deaths might yield a few hundred to a 1,000 cases a year. Many more inquire about than undertake aid in dying because most of us want a better end and often the request is a cry for help.
Those requests reflect profound suffering associated with physical pain, as well as loneliness and spiritual crisis, capped by a loss of control. These common, excruciating handmaidens on the journey of death afflict patients with a range of conditions, affecting more than two-thirds of Americans in the final year of their lives in 2010.
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Gov. Jerry Brown’s poignant signing statement noted: “I don’t know what I would do if I were dying in prolonged and excruciating pain.” Indeed, there’s the rub. We have excellent knowledge about countering the many problems that afflict us when dying, yet gaps in care are enormous.
Are such gaps better or worse than average in California? We don’t know because no one is watching, but most of us want an effective treatment for pain, not a life-ending prescription. How can we be assured of it?
Will our legislators advocate for better end-of-life care? Will they invest in quality measures and public reporting that help us choose a good and not just a shorter end? Will they fund an electronic registry so that patients’ decisions against life-sustaining treatment are readily available? Will they make transparent the financial incentives for more efficient end-of-life care or support training in palliative care for nurses, social workers and physicians?
Such solutions represent the investment that most of us need to avoid an end that we mostly don’t want. We should be able to pick a health plan or oncology group because of excellence in palliative care. We should be assured our doctors make use of knowledge about how to relieve suffering.
Gov. Brown, many of us share your worries, but not many of us will make use of this narrow solution. Please don’t stop until you’ve helped the rest of us.
Karl Lorenz, Stephanie Harman and Steven Asch are palliative care physicians at Stanford University.