The Crushing Cost of Care
A small percentage of challenging cases, often at the end of life, make up the great bulk of Medicare spending on hospital care. Are we anywhere close to containing the costs?
Patients themselves rarely make plans for dying, the period that typically costs the most.
On Valentine’s Day 2009, Scott Crawford, 41 years old, received the break that he thought would save his life. A surgeon at Johns Hopkins Hospital in Baltimore removed his ailing heart and put in a healthy one. The transplant was a success.
An Ailing Patient, Rising Costs
But complications put the former tire-warehouse worker in intensive care for almost a year. Surgeons removed his gall bladder, his left leg and part of a lung. And Mr. Crawford soon became one of the most expensive Americans on Medicare.
As his condition turned grave, one of his doctors questioned whether to keep treating him. Nurses reported feeling “moral distress” over his unrelenting pain. Still, medical opinion was split, and Mr. Crawford’s family, with the backing of his transplant surgeon, pushed forward.
A few days before Christmas 2009, Mr. Crawford died, leaving behind a young son.
According to a Wall Street Journal analysis of Medicare data, the government spent $2.1 million on his inpatient and outpatient care in 2009. That was the fifth costliest of all Medicare beneficiaries that year and the highest among those who died by that year’s end. Medicare covered Mr. Crawford’s costs through federal disability insurance.
A primary goal of the 2010 health-care overhaul that the Supreme Court upheld last week is to slow the growth of costs. Even so, the law does little to address a simple fact: A sliver of the sickest patients account for the majority of U.S. health-care spending. In 2009, the top 10% of Medicare beneficiaries who received hospital care accounted for 64% of the program’s hospital spending, the Journal’s analysis found.
Younger patients like Mr. Crawford were more expensive, representing just 18.5% of the beneficiaries who received hospital care but 23.7% of the total cost. Seniors vastly outnumbered them, however, and consumed 76% of the total hospital costs.
As for Medicare’s long-term cost trajectory, it is relentlessly upward. The program’s net expenditures totaled $486 billion last year, according to the Congressional Budget Office, or 13.5% of all federal expenditures. In March, the CBO projected that Medicare expenditures would grow an average of 5.7% per year through 2022 and equal 16.2% of all federal outlays.
Medicare patients rack up disproportionate costs in the final year of life. In 2009, 6.6% of the people who received hospital care died. Those 1.6 million people accounted for 22.3% of total hospital expenditures, the Journal’s analysis shows.
But efforts by policy makers to tackle the question of end-of-life care have foundered recently. In the debate over President Barack Obama’s health-care overhaul, an initiative to help Medicare beneficiaries plan end-of-life care sank after opponents labeled it a “death panel.”
“We’re always going to have patients in the Medicare program that need a disproportionate number of resources,” said Jonathan Blum, deputy administrator and director for Medicare. As for Mr. Crawford, “A lot of the costs were driven by complications that could have been avoided,” he said, citing an early infection as an example.
Melissa Golden for The Wall Street JournalScott Crawford’s parents, Wayne and Judy. ‘I just felt that, up until the last day,’ Wayne said, ‘they were going to save him.’
Peter Pronovost, a Johns Hopkins critical-care specialist who helped treat Mr. Crawford, said that the hospital has dramatically reduced infection rates. Still, some patients get infections, he said, and the hospital didn’t know whether Mr. Crawford’s was avoidable.
Many factors can make a patient’s care expensive. Doctors are trained to push the boundaries of what is possible. Families want to exhaust their options. Patients themselves rarely make plans for dying, the period that typically costs the most.
This tension helps to explain why reining in costs is so difficult. For patients like Mr. Crawford, “There’s almost an assumption on everyone’s part that if heroic things need to be done, we’re going to do them,” said Ilan Wittstein, a cardiologist at Johns Hopkins who treated Mr. Crawford for a decade.
Notably, the costliest patients aren’t necessarily the oldest, even though Medicare mainly cares for people 65 or older. Of the top 10 costliest people on Medicare in 2009, eight were on disability, including Mr. Crawford. Disability is the main way people under 65 qualify for Medicare.
This account of Mr. Crawford’s life and death is based on interviews with his family, physicians, Johns Hopkins finance officials and Medicare officials. The Journal reviewed hospital medical records, plus billing records from the hospital and Medicare. The agency’s billing records don’t include patient names.
Growing up in Cumberland, Md., Mr. Crawford played Little League and spent hours hunting with his brother. “He’d always been healthy,” said his mother, Judy Crawford. In high school, he juggled jobs at a Chinese restaurant and a retailer, where he worked his way up to becoming a jeweler.
In the summer of 1994, when he was 26, Mr. Crawford started feeling unusually fatigued. He was diagnosed with idiopathic dilated cardiomyopathy; his heart was enlarged and couldn’t pump efficiently. The condition had no clear underlying cause. Mr. Crawford didn’t smoke, was 6-foot-2 and weighed 225 pounds.
For a few years, drugs controlled his condition. Mr. Crawford married, had a son, Nicholas, and worked at a warehouse hoisting truck tires. Insurance through his wife’s employer covered prescriptions and checkups at Johns Hopkins. Dr. Wittstein, his longtime doctor, warned him he would need a transplant and considered him “a great candidate” for it, being young and otherwise healthy.
While awaiting a donor, Mr. Crawford needed a defibrillator to restart his heart in case it malfunctioned. Too fatigued to work, he applied for Social Security disability benefits. Through that program, he became eligible for Medicare in 2005. His marriage frayed and in July 2008, Mr. Crawford divorced.
Medicare costs accumulated. The program spent $275,744 on treatments including a heart pump to keep him alive after his heart failure worsened. Another $75,852 went to implant the defibrillator.Mr. Crawford spoke to his family about wanting to live simply to hold his son on his lap and watch him grow. He also said he didn’t want to be kept alive if he was “a vegetable,” said his father, Wayne Crawford.
Just before New Year’s Eve 2008, a donor heart materialized. Doctors put Mr. Crawford under anesthesia, but ultimately halted the transplant because the donor heart wasn’t squeezing well enough, Dr. Wittstein said.On Valentine’s Day 2009, a second heart came through. Ashish Shah, a cardiothoracic surgeon, performed the transplant.Mr. Crawford’s new heart eventually performed well, but not the rest of him. His gallbladder became gangrenous and was removed. His left foot started turning purple, so his mother would sit by his bed, rubbing his toes. A dermatologist labeled his prognosis “grave,” medical records show.
He suffered from sepsis, a severe infection, and doctors zeroed in on Mr. Crawford’s left leg as the potential source. It was amputated above the knee.
The next day, a bigger worry surfaced, a multi-drug-resistant acinetobacter, a deadly type of bacteria. Dr. Shah had never seen a patient survive that type of infection.
But at the same time, Dr. Shah was optimistic about the new heart’s performance and believed recovery wasn’t inconceivable. Plus, having received a precious donor heart, there was “a stewardship that goes beyond the individual patient,” Dr. Shah said, and extends to the donor out of respect for that person’s gift.
Medicare spent $376,336 on the transplant, according to its records. Only a fraction of the bills went to Mr. Crawford. Under Medicare’s policy, the program pays for certain services for 60 days, minus a deductible. Medicare charged Mr. Crawford $1,024 for the first 60 days of treatment. During that period, Medicare paid out more than $800,000 for his care.
Medicare passed some costs to secondary insurance Mr. Crawford held through a subset of Maryland’s Medicaid program for lower earners.
Mr. Crawford’s kidneys failed. He was put on dialysis. Respiratory failure put him on a ventilator. He could only mouth words, not speak them. “Don’t forget about my taxes,” he told his father around April.
Physical therapists visited to help work toward recovery, but Mr. Crawford at one point indicated that all movement hurt. “Help me,” he mouthed during one session, his records show.
By mid-July, Mr. Crawford’s insurance hit a wall. After 150 days in a hospital, Medicare stops covering most inpatient care, though it still pays some ancillary expenses. At July’s end, Medicaid also ran out because it wasn’t renewed, leaving Mr. Crawford without comprehensive coverage.
Around that time, Dr. Pronovost, the critical-care specialist, sat down with the patient’s father, Wayne Crawford, on a bench outside the intensive-care unit. In direct terms, Dr. Pronovost—who is also a high-profile health-policy expert—told him he didn’t think his son was going to make it.
“You need to help us understand what Scott would want,” he recalls saying. “Do you want us to keep moving forward with these therapies?”
“You mean take his life?” Wayne Crawford recalls asking.
Dr. Pronovost said that wasn’t what he was saying. “I just want to make sure you understand what his prognosis is,” Dr. Pronovost recalls responding.
Wayne Crawford raised his voice. “I guess the money is the problem,” he recalls telling Dr. Pronovost.
Dr. Pronovost said money wasn’t the issue. Wayne Crawford told the doctor he wasn’t ready to give up.In an interview, Dr. Pronovost confirmed the exchange and said he didn’t raise the subject of cost beyond suggesting that Wayne Crawford check his son’s benefit caps. He also said the conversation wasn’t prompted by Mr. Crawford’s lack of insurance.
Shortly after, Dr. Pronovost made clear he had concerns about the cost of treatment in cases like Mr. Crawford’s. He penned an op-ed that ran in the Journal on Aug. 12, 2009, during the height of the “death panel” debate about the proposed U.S. health-care overhaul.
Without naming Mr. Crawford, Dr. Pronovost cited his case to illustrate how patients with bleak prospects are kept alive without objective consideration of their survival chances or cost. He put the patient’s tab at more than $1.5 million. “If we are ever to control rising health costs, we will have to do a better job confronting the realities for patients like this man,” he wrote.
Dr. Pronovost confirms that he was referring to Mr. Crawford. The reporters of this article weren’t aware of the op-ed when choosing Mr. Crawford as a subject.
Wayne and Judy Crawford had reason to press forward: The doctors disagreed about their son’s prognosis. The family was meeting weekly with the transplant surgeon Dr. Shah, their son’s main physician, and he told them there was a chance for survival. The new heart continued to work brilliantly, despite Mr. Crawford’s other ailments. “The rest are wounds that should heal in a guy his age,” Dr. Shah said in an interview.
![[image]](http://si.wsj.net/public/resources/images/RV-AH442_CRAWFO_DV_20120707001201.jpg)
Keith A. WebbIn 2009, Medicare spent $2.1 million on Scott Crawford, making him the fifth costliest of all that year’s beneficiaries.Dr. Wittstein said he asked Mr. Crawford at various points whether he wanted to keep going with treatment. The answer: yes. “He was clear about that,” Dr. Wittstein said. And Mr. Crawford occasionally showed improvement.
In late August, a nurse alerted the hospital’s ethics team that some nurses were feeling “moral distress” in caring for Mr. Crawford, according to his medical records, due to his overwhelming pain. “Several reported feelings of dread or guilt in taking care of the patient,” the records said.
Basic procedures like changing wound dressings left Mr. Crawford “grimacing, beating his hands against the bed railing, and crying,” the report said, indicating that pain control was falling short.
But at the same time, the Crawford family was complaining that too much pain medication left Mr. Crawford doped up and unable to complete the physical therapy necessary for a real recovery. The nursing complaint prompted Johns Hopkins to invite Wayne and Judy Crawford in for an “ethics consult” on Sept. 2 that the family says was unexpected.
Hospital officials asked the Crawford’s their short- and long-term goals. “There is a consensus [Mr. Crawford] has an uphill battle,” team members concluded in the meeting, according to a summary. They told the parents the hospital had no plans to limit or withdraw care.
Wayne and Judy Crawford interpreted the meeting as a nudge to consider ceasing treatment because their son’s insurance had largely run out.
In an emotional response, they told the staff they didn’t want their son to suffer, and understood they may never take him home. At the same time, the Crawfords said they wanted everything possible done.
“This is the No. 1 hospital,” Wayne Crawford recalls saying. If the nurses couldn’t handle their son’s care, he said, they should transfer out of that unit.
His response left hospital officials speechless, Dr. Shah said.Dr. Shah says the meeting was prompted by concern for Mr. Crawford’s suffering and not insurance.
By the fall, Mr. Crawford’s wounds had spread. He couldn’t speak, but would open his mouth to scream, medical records show.
Doctors decided the infection was tied to an abscess on his left lung and removed part of the lung. Although his full coverage had run out under Medicare’s rules, the agency paid $653,744 for the surgery and other treatments.
Mr. Crawford initially perked up, then resumed his decline. In late December, as Wayne and Judy were celebrating Nicholas’ 11th birthday, a nurse called to say Mr. Crawford was deteriorating quickly.
His parents and his sister, Gina Russell, arrived. Sepsis had overwhelmed his system. Death was near
“Something just snapped in me that said, ‘This is the end,'” Wayne Crawford said. He decided the hospital should take his son off the machines keeping him alive.
Judy Crawford rubbed her son’s hair and Ms. Russell held her brother’s hand. He died Dec. 22, 2009.
Johns Hopkins estimates Mr. Crawford’s claims for 2009 totaled $2.7 million, and that $766,919 remained unpaid. The total is higher than the number logged by Medicare, because the agency didn’t cover all Mr. Crawford’s costs.
After inquiries from the Journal, Medicare determined it overpaid Johns Hopkins $316,348 because it erroneously paid for some treatments after Mr. Crawford’s full coverage ran out. The agency said it has recouped that money from the hospital. A Johns Hopkins official said the hospital is pursuing some payments through Medicaid but doesn’t plan to pursue the matter further.
Mr. Crawford’s physicians still disagree on how they handled his case. Dr. Pronovost says doctors let Mr. Crawford suffer by continuing treatment so long. “We’re really, really good about keeping patients alive,” he said. “We’re less good about altering whether they live or die in the end.”Dr. Shah thinks that if he had the case to do over, “it’s not obvious” he would treat Mr. Crawford differently. “Even knowing that bad things were happening to him, it would have been equally agonizing to withdraw support on him,” Dr. Shah said.Wayne Crawford agrees. “I always got up and went to the hospital every morning with the hope that he had improved,” he said.
“I just felt that, up until the last day,” he said, “they were going to save him.”
Write to Janet Adamy at [email protected] and Tom McGinty at[email protected]
From: By JANET ADAMY and TOM MCGINTY, Wall Street Journal, July 6th, 2012
