About three-quarters of us want to die peacefully at home. Most don’t get that wish.
Fewer than a quarter die at home. Most die in hospitals and nursing homes, and a tragic one-fifth die plugged into machines in intensive care, where deaths can be so harrowing that they leave survivors traumatized.
Why don’t we die the way we say we want to die? In part, because saying “just shoot me” is not a plan.
In larger part, we die bad deaths — frightened, unprepared, stripped of family and of a sense of the sacred — because of the poorly understood role that money plays in shaping the medical choices we are given years before the end. The pathway to a good or bad death begins long before the last, panicked ambulance ride to the emergency room.
Medicare and private insurance pay doctors on a piecework basis for performing procedures rather than spending time with patients. This “fast medicine” approach rewards doctors who throw tests, drugs and procedures at patients and punishes those who do slower, less-invasive, higher-quality work.
To give one egregious example: A doctor who administers chemotherapy will receive 6 percent of the cost of the treatment from Medicare, and almost nothing for having a long, time-consuming conversation about when to stop.
Follow the money: Some chemos cost tens of thousands a month; hospice benefit, by comparison, provides little more than $150 a day. As a result, many patients are given futile chemo, internalized cardiac defibrillators costing $35,000, and other painful, expensive, high-tech, Hail Mary surgeries and procedures close to the end of life.
Medicare spends a quarter of its $551 billion annual budget on medical treatment in the last year of life. A third of Medicare patients undergo surgery or a stay in the intensive care unit during their final year.
The most unfortunate are never given the chance to accept and face the coming of death, and they die in intensive care. Of those referred to hospice, a benefit available for the last six months of life, many are referred so late that they get its extraordinary, compassionate benefits for the last 18 days of their lives or less.
I discovered the terrible effects of this distorted logic in 2002, when Medicare paid $12,500 to give my stroke-blasted 80-year-old father a pacemaker to correct a slow heartbeat that gave him no health problems.
Medicare would have paid the family doctor, who disapproved of the cardiologist’s decision, only $54 to discuss whether it was a good idea to put the pacemaker in at all. The device needlessly deprived my father of a natural death as he descended over five years into dementia, near-blindness and misery. He was forced to keep living when death would have been a blessing, not a curse.
My friend Lisa Krieger’s 88-year-old father was suffering from dementia when he developed a mysterious infection. Both she and the medical system were unprepared to talk about death, so he suffered in an intensive-care unit for 10 days until Lisa finally said “enough,” and nature took its course.
The cost in dollars was $323,000. The emotional cost to the family cannot be quantified. Lisa was a gifted science reporter, but like most of us she knew little about what she and her father really needed — an innovative “slow medicine” approach to advanced illness called palliative care.
Palliative care focuses on alleviating suffering, improving quality of life and giving the entire family comfort, honest information and support, rather than avoiding tough conversations and continuing to try to fix the unfixable.
Our culture tells us what it rewards by how it pays. Specialists in high-tech fields devoted to postponing and avoiding the reality of death (invasive cardiology, oncology and the like) earn average incomes skyward of $450,000. Specialists in the growing slow-medicine countermovement (hospice, palliative care, geriatrics and family medicine) often earn a third of that.
It is time for a grass-roots movement of caregivers and patients to pressure Medicare to turn its reimbursement structure upside down: Triple the hospice benefit, loosen its entry requirements and reward the ministering angels in white coats and scrubs who help us face the spiritual challenge of life’s final mystery with meaning, realism, comfort and grace.
Katy Butler is the author of “Knocking on Heaven’s Door: The Path to a Better Way of Death.” She wrote this article for the Seattle Times.