The other day on Diane Rehm's National Public Radio program Katy Butler, author of Knocking on Heaven's Door: The Path to a Better Way of Death, described how caring for her father after a severe stroke essentially killed her mother. It sounded like part of this had to do with her mother's unwillingness to accept help. But a large part of it has to do with a Medicare system and medical establishment whose whole focus is on curing patients rather than caring for them.
Ms. Butler described how Medicare reimbursed her father's doctor just $54 for discussing with the family whether or not he should have a pacemaker, but paid $10,000 to have the pacemaker installed. Then when her mother decided that it made no sense to use the pacemaker to extend her husband's life in his miserable condition, his cardiologist said that to turn it off would be akin to putting a pillow over his face. This was a misstatement of the law and an imposition of his own moral judgment on his patient and family, but Ms. Butler only learned this after the fact.
Ultimately the family found palliative care doctors and her father passed away in the hospice unit of a hospital. But it was difficult to learn about and find these programs.
This system is bad policy on so many levels, it's hard to no where to begin. Here are few reasons we need a change:
We can't afford it. With health care costs already too large a percentage of our national spending, we shouldn't be wasting money on unnecessary medical care. According to one study, almost 30% of the Medicare budget is spent during the beneficiaries' last year of life. According to another study, in 2006 the average Medicare cost for the 5% of beneficiaries who passed away during the year was $39,000 while the average cost for all other beneficiaries was just $6,000.
We need to reduce the incentive to do procedures. It makes no sense to reimburse doctors and hospitals $10,000 for doing unnecessary procedures while only paying $54 for the all-important discussion of whether this is necessary. When the Affordable Care Act originally included reimbursement to physicians to discuss end-of-life issues with patients, it was attacked by Sarah Palin and others as a "death panel" which, according to Wikipedia was described by PolitiFact as the 2009 "Lie of the Year." However, the charge resulted in compensation for end-of-life counseling being removed from the Affordable Care Act.
Burden on families. In Ms. Butler's situation, the extension of her father's low-quality life through unnecessary medical intervention exhausted her mother as the primary caregiver and increased her own stress as she tried her best to help from across the country while continuing to earn a living and be present for her immediate family.
Little funding for care. While Ms. Butler's mother spent a lot of her time ferrying her father to medical appointments, all reimbursed by Medicare, Medicare would pay only $1,500 a year towards speech therapy after a stroke which actually improved his quality of life.
Lack of transparency about cost. It's almost impossible to know how much a medical test or procedure will cost ahead of time or to shop around for the lower-cost provider. To the extent health care costs are covered by insurance, it may not affect our wallets immediately, but it does ultimately through insurance premiums and taxes. Most people will consider price in their decision making even if the costs are covered by insurance, perhaps for some services -- that MRI that isn't going to tell us much we don't already know -- more than others -- fixing a broken bone. Health care may be our only service or product currently not subject to the cost restraining forces of the open market.
Transparency about prognosis. Doctors have a difficult time telling patients and their families about their real odds of success with any treatment or the real pain and suffering entailed in going through the treatment. As a result, many health care decisions are not made with all of the facts in hand. This is part of the health care system's emphasis on cure as opposed to care. Any amount of pain and suffering is often deemed worth it if there's even a small chance at a cure, even though that small chance may be very small indeed.
The availability of palliative care in the United States is growing and there is an increasing recognition that aggressive medical care isn't always the best route for patients and their families. But the medical establishment is a huge ship that we're just beginning to turn, as the cardiologist's reaction to the Butlers' request to turn off the pacemaker exemplifies.