The Looming Epidemic of Safety Net Hospital Dialysis Program Closures

I've done three recent posts on the crisis at Grady Hospital in Atlanta that has led to closure of its dialysis program. (See here, here and here.)

As I predicted, the problem is spreading. Now Jackson Health System in Miami-Dade county is closing a dialysis program that has been serving 175 South Florida patients.

Jackson is a prototypical safety net program, as evidenced by these statements from a video about the system: “we proudly step forward when others step back,” “people turn to Jackson when they have nowhere else to go,” and “when there is nowhere else to turn we reach for the impossible every day.”

The details about Jackson are different from Grady, but the underlying theme is the same. Like Grady, Jackson serves large numbers of uninsured patients. In 2008 it spent more than $500 million on charity care. But it ran a deficit of $200 million, which is clearly unsustainable. The dialysis program was losing $4 million per year. I haven't been able to ascertain how many of the 175 dialysis recipients are undocumented immigrants.

For the moment, none of the dialysis patients are in a crisis situation. Some have been able to get onto public insurance programs. Some are having their treatment continued for now at the dialysis centers Jackson contracts with. And some are coming to the emergency department for emergency treatment, which is paid for by emergency Medicaid funds.

The next steps in the scenario are predictable. Jackson will be blamed for (a) not caring and (b) poor management. Undocumented immigrants will be blamed for coming to the U.S. and "milking the system." Government - county, state and federal - will be blamed for underfunding. Citizens will be blamed for refusing tax increases.

There's probably a bit of truth in each blame statement. But the result of all the finger pointing will be more impasse. The dialysis recipients will suffer, and some may die prematurely.

This isn't just a Miami problem, any more than the Grady situation is just an Atlanta problem. Insofar as the dialysis patients are uninsured citizens it's a national problem. And insofar as some are legal or undocumented immigrants, it's an international problem.

I'm not wise enough to know what the best solution for this safety net problem is, but I do know the best way to find it.

We need to convene a working group to scope out the dimensions of the problem and identify options for action. The ideal convener would be the Secretary of Health and Human Services (or her designate - perhaps the Assistant Secretary for Health). The Medicare End Stage Renal Disease Center would be a key participant, as would the National Association of State Medicaid Directors and safety net providers, perhaps via the National Association of Public Hospitals & Health Systems. Because a substantial portion of the patients who are put at risk by program closure are immigrants, the Office of Citizenship and Immigration Services should be represented. And, because programs sometimes try to send immigrants back to their countries of origin, largely in Mexico and Central America, the Bureau of Western Hemisphere Affairs in the State Department should have a voice.

This may seem like overkill for a problem that involves a relatively small number of people. But the values at stake are central to who we are as a country and to the way others see us. Abu Ghraib involved very few people, but for millions, at home and abroad, it is, and should be, a source of shame. It won't take many stories, photos and videos of dying people "dumped" back to their villages, to do the same.

The problem isn't an easy one. But we should not be leaving it to individual safety net programs to struggle on their own, either by swallowing what will ultimately be unsustainable debt or by taking emergency action based on an inevitably narrow perspective.

Unfortunately, we are more likely to leave the problem to our frayed safety net than to kick it upstairs, where it belongs. That means that in 2010 and 2011 we'll be seeing more Gradys and Jackson Health Systems

(I learned about the Jackson Health System situation from a recent article by Kevin Sack of the New York Times, who has done brilliant reporting on Grady.)

Tony Judt Teaches us about Lou Gehrig's Disease and the Unthinkable

At the start of my residency training in psychiatry, my bookish colleagues and I asked the training director - "what should we be reading?" He responded - "your patients will be your text book - listen to them and you will learn what you need to know."

The training director's advice - that our most crucial learning would come from our direct experience with patients - was totally correct. But if he'd read accounts of the experience of illness like "Night" by Tony Judt in the January 14 New York Review of Books, he would have been more positive about reading as well as listening.

Tony Judt is a brilliant historian and director of the Remarque Institute at New York University. Eighteen months ago he was diagnosed with amyotrophic lateral sclerosis (ALS - Lou Gehrig's disease). In "Night" he starts teaching us about the experience of ALS. Apparently other installments will follow.

Here are some excerpts that were especially powerful for me. My reactions to what Judt tells us are in italics:

I suffer from a motor neuron disorder, in my case a variant of amyotrophic lateral sclerosis (ALS): Lou Gehrig's disease...What is distinctive about ALS...is firstly that there is no loss of sensation (a mixed blessing) and secondly that there is no pain. In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one's own deterioration.

The combination of pain-free clarity of perception and steady loss of function is terrifying. Judt's spare, direct prose gives us a taste of the horror of what we see.

Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment's reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers (and anyone else).

During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs—since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory.

When I read this I recalled how much torment it was in childhood to be asked to "keep still," and being asked "do you have ants in your pants" when I squirmed in my seat in primary school. It wouldn't have occurred to me how ostensibly tiny deprivations like the ones Judt cites could be "psychologically close to intolerable," but when he says it, we get it.

Ask yourself how often you move in the night. I don't mean change location altogether (e.g., to go to the bathroom, though that too): merely how often you shift a hand, a foot; how frequently you scratch assorted body parts before dropping off; how unselfconsciously you alter position very slightly to find the most comfortable one. Imagine for a moment that you had been obliged instead to lie absolutely motionless on your back—by no means the best sleeping position, but the only one I can tolerate—for seven unbroken hours and constrained to come up with ways to render this Calvary tolerable not just for one night but for the rest of your life.

Here Judt, a teacher, pushes the class (us, the readers) into a scary thought experiment - "imagine for a moment..." Probably most of us have experienced at least occasional insomnia. Sleep difficulties are one of the commonest complaints in medical practice. But being awake in the dark, unable to move - that's insomnia writ super large!

...even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims...There is no saving grace in being confined to an iron suit, cold and unforgiving. The pleasures of mental agility are much overstated, inevitably—as it now appears to me—by those not exclusively dependent upon them. Much the same can be said of well-meaning encouragements to find nonphysical compensations for physical inadequacy. That way lies futility. Loss is loss, and nothing is gained by calling it by a nicer name. My nights are intriguing; but I could do without them.

It's hard to enter into the terrifying experiences Judt makes so real for us. That can lead us into expressions of "support" and "hope" that are meant for ourselves. Sometimes people need to be listened to and agreed with - what they're going through "has no saving grace."

(On October 19, 2009, Tony Judt lectured at the Remarque Institue on "What is Living and What is Dead in Social Democracy." At the start of his lecture he spoke briefly about ALS. The video gives a visual image that adds to the power of his essay.)

Michael Porter on the Employer Role in Health Care Reform

Here's what Michael Porter, the Harvard Business School strategy guru, said about employers in a New England Journal of Medicine article last summer:

We must keep employers in the insurance system. Employers have a vested interest in their employees' health. Daily interactions with their workforce enable employers to create value by developing a culture of wellness, enabling effective prevention and screening, and directing employees to high-value providers. Employers can also foster competition and drive broader system improvement in ways that are difficult for government entities to replicate. To motivate employers to stay in the system, we must reduce the extra amount they now pay through higher insurance costs to cover the uninsured and subsidize government programs. We must also create a level playing field for employers that offer coverage by penalizing employers that are free riders.

Employers didn't envision just how complex their role would become when they began to offer health insurance as a benefit during World War II. Wartime wage controls prevented them from using higher pay to recruit and retain desirable employees. Health insurance (and other benefits) allowed them to compete for the employees they wanted.

If we were designing a health system from scratch we wouldn't make employers so central for making it work. Health and health care isn't the business they're in. But that's the system we have, and we have to play with the cards that we've been dealt!

Employers are well positioned to change the system in positive ways.

1. Getting smarter about costs. Public discussion of health care costs last year was pathetic. If we listen to Democrats we believe "greedy insurance companies" are the villains. If we listen to Republicans we believe that "greedy malpractice lawyers" are the evil-doers. Neither party helped us understand the real drivers of the cost explosion: (1) our belief that more care = better care, (2) the corporatization of medicine, (3) fee-for-service payment, and (4) our national allergy to acknowledging the need for limits.
   
   Employers can educate the 160 million Americans who get health insurance through their work about health costs better than politicians can. How much is the total health bill for the company? What percentage is from insurance costs, and how much comes from the impact of "life style choices" on health and productivity? Are the practice patterns in the community efficient and effective, or is insurance money being wasted? Are individual employees (and their families) doing what they can to promote their own well-being?
   
   All but the smallest businesses are large enough to allow meaningful cost patterns to be understandable. And all but the largest multinationals are small enough for employees to feel allied to the employee population they share health costs with.
   
   
2. Influencing care delivery. Physicians, hospitals, and other providers are difficult for politicians to tangle with. We like and trust our providers more than we like and trust our politicians. But businesses are accustomed to looking at value for money in a matter-of-fact way. They can ask tough questions about whether the health services they purchase are producing good outcomes in an efficient manner or if the system that serves them is fragmented and riddled with waste - which, alas, it is!
   
   Quality circles, Lean, and other employee-centered approaches to process improvement have led to substantial gains in value in manufacturing and other industries. Wherever possible, employees should be enlisted in similar activities with regard to the health care they receive. Efficiency shouldn't be the exclusive province of PhD and MD experts. I appreciated the suggestions I received from my own patients about how I delivered care. Employees could contribute useful front line observations about how care can be delivered in a more integrated and efficient manner.
   
   
3. Improving health. Virtually every area of health has peer-led health improvement activities. AA and NA help with substance problems. Cancer support groups have often been shown to contribute to better outcomes. Peers can help each other stick to healthier diets and get more exercise. Over the years it was more and more common for me to encourage patients to go to the web to see what kinds of help they could get from others who have experienced similar conditions.
   
   When employers identify the areas of health that are most problematic for its workplace community it can encourage and support positive actions by individuals, ranging from weight loss and exercise to diabetes management.

Taking this kind of role with health and health care is demanding, and it isn't the primary concern of the business. But the reform debate shows that for the forseeable future we're wedded to employer-based health insurance. The business sector has tremendous potential for shaping our dysfunctional health care system.

(For additional advice from Michael Porter, see his article "What Should Employers Do About Health Care?"

The Medical Council of India Sets Tough Rules about Pharma

Rema Nagarajan, a journalist friend who writes for the Times of India, brought to my attention a recent ruling of the Medical Council of India about physician relationships with Pharma and other health sector industries. On paper at least, the ruling is very tough! The rules include:

• Physicians shall not accept any gifts whatsoever
  
• Physicians (and their families) shall not accept any paid travel, whether for CME or any other purpose
  
• Physicians shall not accept any "hospitality" (such as hotel accomodations)
  
• Physicians shall not accept any cash payments whatsoever
  
• Any research funding must come through institutions, subject to a range of regulations

India is an international target for drug trials, given the size of its population and the laxness of its human subjects protections. And, many physicians are struggling financially such that attendance at educational conferences, especially outside of the country, was essentially impossible for them, making them prey to the appeal of travel funds or gifts of office equipment.

Rules are one thing and enforcement is another. It's not yet clear what the consequences of violation will be. But the Medical Council has put a strong stake in the ground, for which it deserves international recognition.

(For previous posts about pharmaceutical ethics in India see here, here, here and here. For Rema Nagarajan's article in the Times of India see here.)

Tragic Choices at Grady Hospital (3) - Brinksmanship with Human Lives

Grady Hospital has done the right thing, as I predicted it would in a post last week (here):

Clearly, a safety net provider is accountable for using the funds it receives in the most efficient manner possible. But we the public can't be allowed to turf our moral accountability to the Gradys of the world. We the public created safety net providers to care for the underserved, not to take on the burden of our sins in the manner of Jesus. I believe Grady is right to provoke a crisis over dialysis services. If some of its patients are still in limbo on January 3, Grady can't simply set them loose. It will have to continue to provide for them. But it should keep pointing the finger at its funding sources, with the message that Winston Churchill gave in World War II - "Give us the tools, and we will [do] the job," along with this corollary message - "If you choose not to give us the tools, acknowledge that you are the killers, and take responsibility for your decisions!

In his ongoing series detailing the human meaning of the Grady saga, Kevin Sack of the New York Times tells us that Grady has extended dialysis coverage for another month for 50 uninsured patients, mostly undocumented immigrants, for another month "to help give patients more time to make long-term arrangements," according to Matt Gove, who has the thankless job of speaking for Grady.

Grady is still hoping that the patients will take an active role in figuring out what to do. According to Gove “it should be clear to the patients that there’s a responsibility on their side to continue trying to find a long-term plan because at some point this care won’t be available.”

Many of the patients from Latin American countries refuse to return, since they believe - correctly - that access to dialysis of comparable quality will not be there for them. For some, the explicit plan is to go to an emergency room - quite possibly at Grady - whenever funding for dialysis at Fresenius, the private vendor Grady has contracted with, ends.

No one is suggesting that Fresenius will have any obligation when Grady stops paying. That's the difference between being a safety net provider and a private enterprise.

There are three main ways to approach the problem:

1. Send the undocumented patients back to their country of origin, let them fend for themselves with whatever help the country provides, and hope for the best. (Given the national anti-undocumented attitudes, there will be a lot of support for this option. The ethical rationale for this position is that each country is a fully separate entity responsible for its citizens. Radically different standards of health care are unfortunate, but that's the way it is. Who said life on the planet is fair?)
   
   
2. Leave Grady with the problem, which is what's happening right now. (Mother Theresa and her Missionaries of Charity could care for the dying in Calcutta as long as they had nuns who volunteered to do the work and a space in which to do it. Grady's situation is different. Dialysis was costing it $50,000 per patient per year. In its finite budget Grady has to choose which needs to serve. It can't meet them all.
   
   From an ethical perspective, this is the least justifiable alternative. Grady is a public institution, funded by a combination of county, state, and federal funds. We can't make Grady responsible for the choices we force onto it by our budgetary decisions.)
   
   
3. Address the situation internationally as part of global public health. (This won't be easy, but it's the right way to go. If our national policy is to send the undocumented patients back to their country of origin, we should work with those countries to solve the immediate needs of the individuals, but more importantly, to improve health and economic standards overall. If we continue to pretend that nation-states are self-contained islands, we'll just have more and more Grady-like crises. Sadly, this is what we're likely to do for the forseeable future.)

The U.S. created its end-stage-renal-disease program under Medicare when patients on dialysis were brought to Congress to be seen as individuals. That's what Kevin Sack is doing through his series of stories. (He's my candidate for the next round of Pulitzers!) There's no sign yet that we the public, through the higher levels of government, are paying attention. Perhaps that will happen when the one-month extension Grady has created, or the one after that, comes due.

Tragic Choices at Grady Hospital (2) - Undocumented Patients with End Stage Renal Disease

As I've described in a previous post (here), Grady Hospital in Atlanta closed its dialysis clinic on October 3. Grady is a prototypical safety net hospital. It cares for a large number of uninsured patients - U.S. citizens and undocumented immigrants - and has been on shaky financial footing for several years. The dialysis clinic was losing $3 million per year. On January 3 the three month extension of coverage Grady promised to patients who did not have other sources of dialysis support ended.

Kevin Sack of the New York Times, who has been doing a terrific job covering the Grady situation, recently wrote about Monica Chavarria, a 34 year old married mother of 14 and 8 year old boys, who had been on dialysis at Grady and who returned to her original home in the Mexican state of Jalisco when Grady closed the clinic:

On Dec. 22, she exhausted the 30 free dialysis sessions that Grady had provided at a gleaming private clinic in Guadalajara. On her doctor’s advice, she had been stretching out the treatments...by going two times a week instead of the recommended three. Going without dialysis can prove fatal in as little as two weeks, and the twice-a-week regimen has at times left her weak.

...Everywhere, it seems, there are roadblocks to affordable care. The dialysis unit at Guadalajara’s public hospital, which offers heavily discounted prices to the uninsured, has a waiting list that extends for months. Ms. Chavarria is not eligible for the insurance plan known here as Social Security, which is limited to salaried workers. [And] the country’s five-year-old health program for the uninsured, Seguro Popular, does not cover end-stage renal disease.

Sack's article gave a link to an article in this month's American Journal of Kidney Diseases on care for undocumented immigrants with end stage renal disease (here). The authors estimate that there may be as many as 5,500 undocumented immigrants with ESRD in the U.S. If they were U.S. citizens their care would be paid for by Medicare. But the undocumented are not eligible for the Medicare program, and in most states are not eligible for Medicaid either. Safety net facilities like Grady that undertake treatment of undocumented patients are left holding the financial bag. Grady's no-win ethical dilemma was - risk going down the tubes altogether, and depriving a large population of its services, or put some of the dialysis patients at severe risk.

Kidney physicians have addressed the ethics of the situation Grady Hospital encountered in a thoughtful manner:

1. All health care professionals and health care systems have an ethical obligation to treat the sick.

2. The federal government has the ethical and fiscal responsibility to provide care for patients within the US borders.

3. The financial burden of this care should fall not only on states that have the highest number of uninsured citizens or noncitizens, but also should be a national responsibility.

4. Because of the unique nature of ESRD, all citizens and noncitizens with ESRD should be eligible for emergency federal funding if they do not have insurance or resources to pay for renal-related care.

5. Nephrologists should not be expected to act as agents for the Immigration and Naturalization Service and should not be expected to report undocumented noncitizens because of patient confidentiality and the fiduciary nature of the patient-physician relationship.

The kidney physicians are correct in placing the ultimate ethical (and fiscal) responsibility on the federal government. Immigration is a national concern. Safety net facilities like Grady should not be put in the "hot potato" situation of having lifetime fiscal responsibility for the patients it ministers to. If we play that game the safety net will implode.

Given the national backlash against the undocumented population it's hard to imagine that the U.S. will take on open-ended responsibility for the care of undocumented immigrants. This means that addressing the problem in a humane manner requires international cooperation. It's not clinically or ethically acceptable for the U.S. to "dump" undocumented patients back on the always poorer country the patient came from. If nephrologists and public health specialists from the U.S. and Mexico worked together to create a policy and care framework for patients like Monica Chavarria their care, and the services for other patients with ESRD in Mexico, would be improved.

A Remarkable Health Initiative at the University of New Hampshire

Watching the federal health reform process has strengthened my conviction that the changes our health system needs will have to come from the bottom up, not the top down, and that employers play a key role.

Here's how I put this idea a month ago in a post about employer incentives:

Federal health reform is the front page news, but states and businesses are the laboratories for change. Next to Governors, who have to deal with hideous budget problems driven by declining revenues and escalating Medicaid costs, employers who offer health insurance to their employees are most directly concerned about health care costs.

Health reform requires three ingredients: (1) facing facts, (2) thinking strategically and (3) embracing individual and population concerns. Given the virulent divisiveness of current U.S. politics, employers who offer health insurance are the most promising venue for applying this triad in a "businesslike" manner!

Employer insurance covers approximately 160 million of the non-elderly U.S. population. Because the business world is way ahead of health care in its zeal for (a) casing the environment for good ideas ("benchmarking") and (b) adopting those that work well elsewhere, (c) promising innovations have the potential for rapid diffusion.

I recently came upon the website for Healthy UNH, a remarkable program launched this fall at the University of New Hampshire. The scope of the program is breathtaking, as evidenced by this statement of vision and goals:

Vision: UNH will be the healthiest campus community in the country by 2020.

Values:

1. Transforming health care delivery
2. Creating value for the money we invest in medical care
3. Ensuring that the care we purchase is the right care at the right time
4. Following medical care practices that are evidence-based
5. Improving the health of our entire community, spanning multiple locations and audiences
6. Sustaining health and health care
7. Collaborating across our community
8. Engaging and educating our community
9. Advancing mental and physical well-being
10. Promoting work/life balance

The website includes action plans for changing the way care is delivered to the UNH community, educating the community about what's driving the cost trend, encouraging the use of evidence-based cost effective care, and increasing wellness-promoting behaviors. It's a comprehensive program about enhancing the bang for the bucks the University invests in health insurance (for approximately 2,800 faculty and staff) and improving the health of the entire community, which includes 15,000 students.

It's too early to know what the Healthy UNH program will accomplish. But the way the program is conceptualized can show other employers how worksites can become a force for health literacy, promotion of wellness, and delivery system change.

Over time, as more employers take a holistic approach to promoting health, reforming health care delivery, and getting a grip on runaway costs, state and federal legislators will get the message. Our leaders will lead us better when the front lines show them what needs to be done and how to do it!

(Additional posts about worksite initiatives are available via the "Employer Insurance Ethics" tab. See also a New England Journal of Medicine article - "The Employer as Health Coach.")