The Place Where No Treatment or Cure Can Be Found
Health Cost Matters focuses on waste and abuses built into the healthcare system. This article examines the many costs that result when end-of-life care goes on medical autopilot. What is required for patients and their families to take control? The following story is very personal to me, but it will be familiar to many.
Not all costs are financial.
My Mother’s Story
Her last chapter hasn’t ended yet, but the prologue has been written. My 93 year old mother has been released from her last acute care admission, and we have just enrolled her in hospice care.
For my mother, this means that she gets to remain in her assisted living apartment, but from now on, there will be no trying to cure her old age. Hospice physicians and nurses will follow her, she can stay on the medications that keep her feeling well and comfortable, and she can eat and drink mostly what she wants. The biggest change is that during her next emergency, instead of rushing her to the ER where she would endure what always happens next (lots of tests, disruption in her life, still no cure for getting old), hospice will monitor her and keep her safe and comfortable until the end.
Given her feistiness, her competiveness and her constitution, she just might outlast us all. She’s a force.
At age 90, my mother was still golfing, playing bridge and mahjongg and, to her children’s consternation, she was the designated driver on lobster-and-movie nights out with her dwindling group of friends.
One spring day in 2014 she visited her doctor, complaining that her hiatal hernia was acting up. That spelled the end of life as she knew it. Following an abnormal EKG, she was whisked from the doctor’s office to the nearby regional hospital for an emergency cardiac catheterization. Her cardiologist called to discuss possible complications before performing the procedure. Ordinarily he might not recommend a cardiac cath on someone her age, but since she was living such a full and active life, he thought it was worth the risks. My family agreed.
The good news was that the cardiac cath was a “total success.” She had 95% blockage in two of her coronary arteries, so she had stents implanted to clear and open those arteries. Her cardiologist said afterwards that the blockage was so great, she probably wouldn’t have survived the week without the procedure. Her heart could now take her through another decade. The bad news was that, during the procedure, plaque broke loose from her arteries and wound up as “emboli showers,” or mini strokes throughout her brain. Those mini strokes disabled her.
At Age 90, What Follows Disability?
Since then, her life has become disassembled bit by bit. Following hospitalization and a 100-day inpatient rehab stay, she lost her independent living. She required 12-hour, and eventually, 24-hour aides by her side. Her friendships faded away, as did her ability to manage her own affairs. It soon became clear that her home could no longer keep her safe, so we sold it, distributed (or discarded) all of her and my deceased father’s possessions and moved her into assisted living.
End of Life Care And The Costs Associated With Aggressive Treatment
On Christmas Eve morning 2016, my mother was taken to the hospital via ambulance because she couldn’t be roused. It wasn’t known at first whether she was suffering from a stroke or seizure. (Turns out, it was a day-long seizure.)
What followed next was:
- A two-day inpatient admission to an acute care facility and then discharge home followed by…
- Severe reaction from a drug overdose, physician error, followed by…
- Re-admission to the same facility within 18 hours, during which time she was mostly bed-ridden and food was withheld for further testing resulting in …
- Loss of physical strength, so she couldn’t be transferred back to assisted living until after …
- Admission to inpatient rehabilitation for 10 days.
Finally, 16 days later, she was transferred home. For the next two weeks, she struggled with sadness and despair because her body is failing and she feels she has no control over her life.
While to her and to us the financial cost was the least of this, it’s worth noting the financial burden of this “episode of care” (Medicare jargon):
- 26 claims
- Charges: $73,730
- Medicare paid: $36,275
- Secondary insurance paid: $2,470
Multiply this scenario and its associated costs by the millions of encounters that individuals in similar circumstances endure annually. The toll in terms of human misery and financial expense is breathtaking.
Looking back, I wish for a redo. My brothers and I could have placed our mother in hospice-at-home following her May 2016 hospital admission (in which the treatment, medication errors and outcomes were eerily similar to this episode).
For a person to be hospice-eligible, a physician must certify that life expectancy is six months or less. But as long as a patient meets the certification criteria there is no limit to the amount of time a patient can spend under hospice care.
Under hospice management this past December morning, my mother would have remained in her own bed. She would have awoken from her seizure the same time she awoke in the hospital, but in familiar surroundings. She wouldn’t have had to endure the ugly side effects of a drug overdose that resulted in a readmission within 18 hours of being discharged. She wouldn’t have had to suffer through a battery of testing and treatment that left her physically and mentally depleted. Most importantly this episode could have been spent in peace and comfort – or allowed for a peaceful, permanent ending.
Overtreatment Is An Epidemic
About 30% of all Medicare healthcare spending occurs during enrollees’ last year of life. In 2015 Medicare spending during the last year of life totaled $187 billion, with only $16.1 billion of that amount – 9% – spent on hospice care. The good news is that hospice utilization has almost doubled among Medicare beneficiaries between 2000 (when 23% of the Medicare population utilized hospice to some degree) and 2010 (44% of the population utilized hospice). Still, our treatment-centric healthcare culture combined with available coverage results in beneficiaries seeking more care, more frequently. While this may result in closer monitoring and better outcomes for healthier beneficiaries, it often results in over-treating and over-medicating patients whose problems have no cure. When every encounter is met with a referral for more testing, a new prescription, another treatment, medical care becomes a false promise of restored vigor. End-of-life cannot be cured and, absent pain, it might be better left to resolve itself.
Being Mortal and Letting Go
Being Mortal is the 2014 bestseller by Atul Gawande. It is a stirring reminder that death is the normal outcome of living, and it is an important read for anyone who is facing (or will face) end of life decisions.
“Treatment at all costs” causes extraordinary suffering when the goal of treatment, Dr. Gawande writes, should be to enable well-being. At the end of life, care ought not to be focused on disease, but on the quality of a person’s remaining time.
Why do we and our loved ones so often receive treatment at all costs? The decision of when to let go, absent the rearview mirror, is difficult, personal and complex.
Sometimes physicians’ attempts to guide a family are not always heard or heeded, or are fiercely debated. Physicians, as well, can be in denial about a patient’s condition or are uncomfortable talking about death and, with their heads down, focus on a body part and not on their patient’s unfixable wish - more time.
Sometimes patients and their families need a strong and kind hand to help lead them through, and that strong, kind hand is not always offered or available. Sadly, physicians are not compensated (or compensated adequately) for what might take hours patiently addressing patients’ questions and objections to letting go.
Patients and their families, desperate and hoping for more time, will sometimes barter six weeks’ painful treatment in exchange for a peaceful death in four weeks.
Longing, denial, guilt - what a complicated, knotty stew.
It’s hard to know when to shift from treatment and hope to acceptance when we don’t know when that ‘last year’ of someone’s life begins. We may wish to be led here by a wise and compassionate caregiver, but we cannot count on that. This may be the most excruciating truth or conversation we may ever face, but in the end we cannot expect our doctors alone to remind us that our ultimate fate cannot be escaped or cured.
While my mother’s primary diagnosis is old age, she has no prognosis. She could live another six months but it could be longer, she’s a fighter.
We welcome feedback and ideas from readers and thought leaders from all sides that is reasoned and not politically dogmatic.
Follow @loisrhall on Twitter.