Friday, March 16, 2012
Thursday, March 15, 2012
You should never do this procedure without pain medicine," the senior surgeon told a resident. "This is one of the most painful things we do."
She wasn't scolding, just firm, and she was telling the truth. The patient needed pleurodesis, a treatment that involves abrading the lining of the lungs in an attempt to stop fluid from collecting there. A tube inserted between the two layers of protective lung tissue drains the liquid, and then an irritant is slowly injected back into the tube. The tissue becomes inflamed and sticks together, the idea being that fluid cannot accumulate where there's no space.
I have watched patients go through pleurodesis, and even with pain medication, they suffer. We injure them in this controlled, short-term way to prevent long-term recurrence of a much more serious problem: fluid around the lungs makes it very hard to breathe.
A lot of what we do in medicine, and especially in modern hospital care, adheres to this same formulation. We hurt people because it's the only way we know to make them better. This is the nature of our work, which is why the growing focus on measuring "patient satisfaction" as a way to judge the quality of a hospital's care is worrisomely off the mark.
For several years now, hospitals around the country have been independently collecting data in different categories of patient satisfaction. More recently, the Centers for Medicare and Medicaid Services developed the Hospital Consumer Assessment of Healthcare Providers and Systems survey and announced that by October 2012, Medicare reimbursements and bonuses were going to be linked in part to scores on the survey.
The survey evaluates behaviors that are integral to quality care: How good was the communication in the hospital? Were patients educated about all new medications? On discharge, were the instructions the patient received clear?
These are important questions. But implied in the proposal is a troubling misapprehension of how unpleasant a lot of actual health care is. The survey measures the "patient experience of care" to generate information important to "consumers." Put colloquially, it evaluates hospital patients' level of satisfaction.
The problem with this metric is that a lot of hospital care is, like pleurodesis, invasive, painful and even dehumanizing. Surgery leaves incisional pain as well as internal hurts from the removal of a gallbladder or tumor, or the repair of a broken bone. Chemotherapy weakens the immune system. We might like to say it shouldn't be, but physical pain, and its concomitant emotional suffering, tend to be inseparable from standard care.
What's more, recent research suggests that judging care in terms of desirable customer experiences could be expensive and may even be dangerous. A new paper by Joshua Fenton, an assistant professor at the University of California, Davis, and colleagues found that higher satisfaction scores correlated with greater use of hospital services (driving up costs), but also with increased mortality.
The paper examined patient satisfaction only with physicians, rather than hospitals, and the link between satisfaction and death is obviously uncertain. Still, the results suggest that focusing on what patients want — a certain test, a specific drug — may mean they get less of what they actually need.
In other words, evaluating hospital care in terms of its ability to offer positive experiences could easily put pressure on the system to do things it can't, at the expense of what it should.
To evaluate the patient experience in a way that can be meaningfully translated to the public, we need to ask deeper questions, about whether our procedures accomplished what they were supposed to and whether patients did get better despite the suffering imposed by our care.
We also need to honestly assess our treatment of patients for whom curative care is no longer an option.
I had such a patient. He was an octogenarian, but spry, and he looked astoundingly healthy. He'd been sent to us with a newly diagnosed blood cancer, along with a promise from the referring hospital that we could make him well.
But we couldn't. He was too old to tolerate the standard chemotherapy, the medical fellow on duty told him. When I came into his room a little later he said to me, with a stunned and yearning look, "Well, he made it sound like I don't have a lot of options." The depth of alienation, hopelessness and terror that he was feeling must have been unbearable.
The final questions on the survey ask patients to rate the hospital on a scale from worst to best, and whether they would recommend the hospital to family and friends. How would my octogenarian patient have answered? A physician in our hospital had just told him that he would die sooner than expected. Did that make us the best hospital he'd ever been in, or the worst?
Hospitals are not hotels, and although hospital patients may in some ways be informed consumers, they're predominantly sick, needy people, depending on us, the nurses and doctors, to get them through a very tough physical time. They do not come to us for vacation, but because they need the specialized, often painful help that only we can provide. Sadly, sometimes we cannot give them the kind of help they need.
If the Centers for Medicare and Medicaid is to evaluate the patient experience and link the results to reimbursement, it needs to incorporate questions that address the complete and expected hospital experience. It's fair and even valuable to compare hospitals on the basis of how well they maintain standards of patient engagement. But a survey focused on "satisfaction" elides the true nature of the work that hospitals do. In order to heal, we must first hurt.
Wednesday, March 14, 2012
Thousands of Americans who need transplants die every year because they cannot find a suitable donor, advocates say.
They propose a controversial way to encourage more people to come forward: Pay them.
"It is widening the donor pool. A lot of times employers don't pay for the time off that these donors take from work," says Doreen Flynn of Lewiston, Maine.
"So I think in those instances those people can say, 'you know I can do that,' knowing that there will be a support system for them at the end."
Ms Flynn's three daughters have a rare genetic blood disorder called Fanconi Anaemia. Their bone marrow does not make enough blood cells to keep them healthy and their only hope for survival is a transplant.
It is against US law to sell body parts - including bone marrow. But last year, Ms Flynn won a court ruling in favour of compensating donors whose blood stem cells are collected using a process called aphaeresis.
Instead of undergoing surgery to remove the fatty tissue containing the cells, donors are given medication that stimulates stem cell production. The surplus cells are forced out of the bones and extracted from the blood stream.
The procedure is comparable to giving blood, campaigners say, and the judges who ruled in her favour said it rendered the phrase "bone marrow transplant" obsolete.
But the Obama administration has appealed the ruling. It argues the aphaeresis contravenes federal law banning the sale of human organs - including bone marrow.
Jeff Rowes, a lawyer for the Institute for Justice, which represents the Flynn family, says the law is out of date.
"When congress passed the National Organ Transplant Act in 1984, you could only get these blood stem cells out of the bone marrow by sticking a needle in your hip," he says.
"Now, you can get the blood stem cells the same way that we donate other blood components like plasma and platelets. You can compensate donors of plasma and platelets and there's no reason why you shouldn't be able to compensate bone marrow donors when you get the cells in exactly the same way."
The government challenge is a major setback for the Flynn family, who are running out of time to find a match for 13-year-old Jordan.
She's become so sick doctors have only a couple of months left to perform a transplant with the most suitable donor they can find - and even that won't guarantee her survival.
"The whole process of getting a transplant scares me because I know people who passed away afterwards," Jordan says, sitting in her bedroom decorated with posters of Justin Bieber and other teen idols. "But I try to stay positive."
Her seven-year-old twin sister's health is also beginning to deteriorate.
Jorga and Julia were conceived in the hope that their healthy bone marrow could be given to Jordan (children of two parents who carry the Fanconia gene have a 25% chance of being born with the disease). But embryonic screening failed to detect that they too suffered from Fanconi Anaemia.
Despite the desire of the Flynns and other families to boost their chances of finding a match, the National Marrow Donor Program strongly opposes any financial incentives for donors, regardless of the medical procedure.
People who want to sell organs are more likely to withhold medical details and other information that could harm organ recipients, the organisation says.
"Our experience and research show that a donor system that relies on the human desire to help others is far superior to one that focuses on self-gain," the organisation says in a statement.
Some doctors are concerned about the risk, but Dr Imad Tabbara, head of the Bone Marrow Transplant Program at George Washington University Medical Faculty Associates, says unsuitable donors are eliminated through screening.
"It used to be a concern that donors may carry certain infections or certain viruses, but with the technology we have now in terms of screening across the board, I don't think that should be a problem."
He also predicts compensation would increase the pool of minority donors - Asians and African Americans in particular are underrepresented on national registries.
There are 9.5 million registered bone marrow donors in the US and the National Marrow Donor Program has access to millions more around the world.
But it can take several years before prospective donors are matched with a patient, by which time they may be unwilling or unable to continue the process, says Mr Rowes, the Flynns' lawyer.
He thinks compensation will provide an extra incentive to follow through. And he stresses that the payments will not be made in cash, but in the form of $3,000 scholarships, housing allowances or a charitable donation that would be administered as a pilot program by the non-profit group, MoreMarrowDonors.org.
The Obama administration has asked the US Court of Appeals to rehear the case. If, as is expected, the court declines, it could go to the Supreme Court to decide whether science has advanced far enough to eliminate the ethical questions surrounding payments for bone marrow donors.
Mr Rowes says patients should be allowed to decide for themselves the risks of taking organs whose donor has been compensated.
"When somebody needs a bone marrow transplant, it's because they're dying," says Mr Rowes. "Their death is imminent and certain. No donor equals death."
Tuesday, March 13, 2012
Pre-existing conditions: The real reason insurers won’t cover people who are already sick - Ray Fisman - Slate Magazine
CHICAGO — Even as she struggled to manage her Type 2 diabetes, Fannie Cline's condition spiraled downward. It was not uncommon for Mrs. Cline, a 69-year-old retiree, to have dizzy spells, some so bad that they landed her in a hospital emergency room near her home here on the South Side.
But last May, she began to receive extra attention from Gwlie Lloyd, a registered nurse and care manager at Advocate Health Care, which operates a number of Chicago hospitals and clinics. Ms. Lloyd frequently calls to check on Mrs. Cline; she offers advice on diet and exercise, schedules appointments, orders meals for delivery and arranges appointments with a social worker.
As a result, Mrs. Cline's health has markedly improved. She is more active, the dizzy spells have subsided and she has not been hospitalized since May. Now she spends her days visiting friends.
"It is nice to have someone call you in between your visits to the doctor's office to see how you are," Mrs. Cline said. "If my blood sugar is elevated and I feel off balance, she will ask me what I have been eating lately. She might say, 'Maybe you need more oatmeal or fruit.' "
The extra attention Mrs. Cline receives is the result of a radical departure from traditional fee-for-service medicine. Advocate runs one of the nation's first and largest accountable care organizations, a new kind of health care practice gaining momentum in part because of the Affordable Care Act signed into law two years ago by President Obama.
A.C.O.'s, as they are known, are collections of medical providers who band together under one business umbrella. The organization can include primary care doctors, specialists, social workers, pharmacists and nurses. The difference is in how these providers are paid: Instead of an insurance company or the government reimbursing each provider for each service provided to each patient, the A.C.O. is paid simply to care for a group of patients.
If the organization can reduce the cost of caring for the patients while maintaining their health, it gets to keep and divide up some of the savings — a powerful incentive to do things differently, experts hope. But if the A.C.O. cannot meet quality measures and costs rise, the providers in the organization may well receive lower payments.
The A.C.O. may strike some critics as a worrying repackaging of the H.M.O. in its earliest incarnations, but there is little doubt that more Americans will be enrolled in these provider groups in the coming years. "A.C.O.'s are coming, and it will change the way we pay for health care," said Dr. Michael Cryer, national medical director for the employee benefits consultancy Aon Hewitt. "Providers are doing things in a positive way rather than a reactive way. We are seeing the beginnings of a tsunami."
For the past year, Advocate has cared for more than 200,000 patients insured by Illinois Blue Cross plans, and so far the A.C.O. has managed to reduce hospital stays and overall costs for patients, according to Steve Hamman, vice president for network management at Illinois Blue Cross. Advocate, like other A.C.O.'s, manages to do this in large part by hiring people like Ms. Lloyd to better coordinate patient care.
Care managers exist outside of A.C.O.'s, but they are particularly important in this new health care setting. Care managers keep patients like Mrs. Cline out of expensive hospitals by reminding them to take their medications, helping them to eat properly, and troubleshooting logistical problems that elderly and sick patients often encounter.
"A care manager may care for up to 150 patients, and the savings from keeping these patients healthy, and potentially out of the hospital, pays for their salary several times over," said Dr. Lee Sacks, chief medical officer at Advocate. "But it's more than just the economics. It's the right thing to do."
Private insurers nationwide have begun enrolling beneficiaries in A.C.O.'s, but they may have an even bigger effect on Medicare participants. In April, A.C.O.'s participating in the Medicare Shared Savings Program will begin accepting Medicare patients. By the end of the year, at least two million will be enrolled, according to government estimates.
Medicare plans to require that A.C.O.'s achieve 33 quality measures for patients, like reducing readmissions of patients who experience an infection or complication the hospital should have prevented. (Private insurers like Illinois Blue Cross have similar requirements, though they can vary.)
Unlike H.M.O.'s that restrict a patient's choices of doctors and hospitals to the health plan's network, A.C.O.'s must offer Medicare enrollees a choice of how they get their care and from whom. Patients in A.C.O.'s can go outside of a network and still receive reimbursement, and an A.C.O. has latitude in how it organizes providers and coordinates care.
Medicare beneficiaries will be assigned to an A.C.O. through the doctor that provides them with the most primary care services. They may opt out, but many may not even realize they are enrolled in an A.C.O.
"This is not about restricting care, but to proactively coordinate care and to ensure that the patients' needs are met early in the process," said Jonathan Blum, deputy administrator at the Centers for Medicare and Medicaid Services.
Still, some experts are concerned about the advent of an untested model of care that is expensive and complicated to put in place, and that recalls to some degree the practices of H.M.O.'s 20 years ago, when doctors were paid monthly fixed fees in hopes that they could provide all the care a patient needed — and still have money left over for a profit.
Not so long ago, politicians and the news media feasted on terrible stories of patients denied care by their H.M.O.'s. And it was not uncommon to see doctors' practices go out of business or file for bankruptcy when they were unable to manage the financial risks.
Dr. Joseph Golbus, president of NorthShore University HealthSystem's medical group, a rival to Advocate in Chicago's northern suburbs, said the A.C.O.'s structure places even more of the financial risk of caring for sick patients on providers, not the insurance companies or Medicare.
While many hospitals nationwide are snapping up local practices in hopes of transforming themselves into A.C.O.'s, others are hesitating because they worry about high administrative costs and more bureaucracy.
"The costs are going to accrue to the providers, but the benefits are going to accrue to everyone else," said Dr. Golbus. "What I think killed H.M.O.'s in the '90s was limiting access to patients and telling the doctor he is now worth 17 cents per member, per month. We don't want to see that again."