A Squeaky Wheel Awaiting Results [and a further update]

A week has more or less passed since my last update, and I find myself again waiting on results. The poet John Keats speaks in laudatory terms of negative capability– “when man is capable of being in uncertainties, Mysteries, doubts without any irritable reaching after fact & reason.” Keats, of course, was not waiting on a potential cancer diagnosis when he wrote this; but a trained and licensed doctor, he was only a few short years away from his own diagnosis of the tuberculosis which would kill him soon thereafter. So who knows.

My capability, negative or otherwise, varies. The results I most recently waited for were, according to the CT scan diagnostician regarding the 1.5 cm lesion on my kidney, “inconclusive, but worrisome.” At the end of the narrative, in case the import was missed, the diagnostician reiterated, “I repeat, the findings are worrisome for the presence of cancer.” To boot, he made note of sundry cysts and a 2 cm mass on my liver– which is believed, but not known,  to be a hemangioma– a noncancerous mass made up of a tangle of blood vessels.

But there was also good news:  a) even if the mass on my kidney is cancerous, it does not appear to have spread– no metastasis; and, b) I am told that if it had migrated from somewhere else it would look very different. I was scheduled for a follow-up MRI with contrast and without  to try and reach more definitive conclusion– which I underwent on Tuesday.  I should have results on Thursday.

And therein lay a tale perhaps worth telling. With the MRI I had demonstrated, once again, in clear and unequivocal terms, the importance in medical care of either having an advocate or being one for yourself. My own history with hospitals over the years has made this clear; a number of studies have shown the same: proactive patients get better care. In this instance, I was initially told that there could be no appointment for me on Tuesday. I balked. I was assured that none was available. I explained: it takes two days to get results, my doctor does not have Friday office hours. If I take this MRI on Wednesday, I will have to wait until Monday for results– and by that time, I’ll have lost my mind. They said no. They conferred about something; I asked rather brusquely if there were a problem. I was told there was none. They conferred again. I was then given an appointment for Tuesday at 5:30 pm.

I arrived early with my son, who is 17 years old, signed in, presented my prescription and took a seat to fill in forms. A single parent, I have taken one of my children  to each of my appointments so far–except one. Although my 20 year-old daughter had offered to accompany me on a first bloodtest prior to the 2nd CT scan, I declined. I would merely have to give blood. As I walked towards the outpatient entrance I slowed, descending into myself. I sank as I entered and came to realize that I had made a mistake– I was, in that state, far less capable of advocating for myself if need be. Perhaps it’s as simple as having someone to talk to, or, as the case may be, make faces at. But I am better for their presence, less trapped in my own.I haven’t made the same mistake again.

I sat with my son in the MRI waiting room as a number of patients left. Finally, it was just us and three elderly women– none of whom could have been a minute over 92. Alone, the women sat waiting and quiet. When the room had cleared and the waiting room attendant asked their status it turned out that the one woman had a grandson on the way to pick her up, but the other two had seemingly slipped through the cracks. The one was primarily Spanish speaking and wheelchair bound. Having finished her test a while ago, records showed she had been waiting more than two hours for someone from the nursing home to come back and pick her up– a phone call to the nursing  home from the attendant seemed to indicate that no one had called the home prior to apprise them of this. The other woman, though ambulatory, had been taken from somewhere else in the hospital to have an MRI done, but no one remembered to sign her in– she, seeming somewhat confused, explained how she had been brought over–and it seems had been waiting for more than an hour, maybe two or more. They took her in right away as the techs were winding down and getting ready to close shop for the day.

I tell this because it was in such sharp contrast to my own experience. Just being there that day only happened because I was willing and able to advocate for myself.  In addition, my MRI prescription failed to direct an examination of my liver– despite the yet to be definitively determined mass thereon. I, however, had brought the printed results of the CT Scan with me, and as I sat and spoke with the MRI technician about both the intricacies of his job, some aspects of mine, and enough about my condition to have shown that I had done my research– he agreed it would be best to focus on my liver as well as my kidney as we’d “already be there anyways.” It was the reasonable thing to do. Not a huge victory by any means, but an important one. The prospect of having to come back for another test and await even further results would have served no one. And at 6pm it is highly unlikely that calling my doctor and sorting it out was all that much of a viable option. But the point is this, I was able to advocate for myself– having graduated from law school and passed the NY Bar I have, in fact, been trained to do just that. I was significantly better off for having done so. The two older women in the waiting room simply did not have that advantage, and suffered on account of it.

Truth is, whether with parent, spouse, child or friend– this, over the years has become clear to me: a patient needs an advocate. The MRI events were just a small, but telling, example.

And yes, no longer capable of “being in uncertainties,” tomorrow I will be engaged in the  “irritable reaching after fact & reason.”

UPDATE, 12:19 PM, 8/18/11: All in all I preferred the uncertainty. It seems I have kidney cancer. And although it has shown no sign of spreading, what was thought to be a 1.5cm tumor showed to be 3.1 cm in the MRI– a horse of a different color. I now await reasons for the discrepancy in size while attempting to schedule a second opinion. Sloan-Kettering (God and Cigna willing) here I come.

Getting Mental Health Coverage Wrong

Thanks to Frank for inviting me to review Barak Richman, Daniel Grossman, and Frank Sloan’s chapter,  Fragmentation in Mental Health Benefits and Services, in Our Fragmented Health Care System: Causes and Solutions (Einer Elhauge, ed. 2010).  The book is important and provocative.  The chapter on the fragmentation of mental health care couldn’t address a more timely issue.

People with serious mental illness, more than most other patients, struggle with health system fragmentation. As the Institute of Medicine described it,

Mental and substance-use (M/SU) problems and illnesses seldom occur in isolation. They frequently accompany each other, as well as a substantial number of general medical illnesses such as heart disease, cancers, diabetes, and neurological illnesses. *** Improving the quality of M/SU health care-and general health care-depends upon the effective collaboration of all mental, substance-use, general health care, and other human service providers in coordinating the care of their patients. *** However, these diverse providers often fail to detect and treat (or refer to other providers to treat) these co-occurring problems and also fail to collaborate in the care of these multiple health conditions-placing their patients’ health and recovery in jeopardy.

By some estimates, formerly institutionalized people with serious mental illness experience about 25 fewer years of life, mostly due to the effects of treatable physical illnesses such as cardiovascular, pulmonary and infectious diseases.  The effects of this health system fragmentation are experienced notwithstanding parity legislation, and they are felt also by people in the community with less serious mental illness, often because their primary care providers can’t find mental health providers to whom they can refer.

In Fragmentation in Mental Health Benefits and Services, the authors approach mental health system fragmentation by telling a story of the relationship between health insurance structure and income redistribution. The authors address the interrelationship between insurance “carve-outs” for mental health care and the growth of mental health parity laws. They assert that the carve out of behavioral health coverage from medical insurance provokes states to pass mental health parity laws. According to the authors, these parity laws fail to help their “intended” beneficiaries, and instead serve to redistribute resources away from low income and non-White employees.

To make their case, they mine a database of claims data for privately insured North Carolina patients. These claims data allow them to track employees’ (and, presumably, their dependents’) use of mental health services. Along the way, they raise several important issues. For example, they suggest that care provided by mental health providers may not be particularly efficacious. (299) Few would disagree that in most areas of health care — including mental health care — comparative effectiveness research is essential.   In addition, they suggest that access to and benefit from covered services varies by income and race. (298-99) It is undoubtedly true that there are class-based and race-based disparities in access to health care; this is so much discussed, in fact, that it somewhat puzzling that the authors would characterize as a “regularly overlooked question” the fact that “equal insurance and access does not translate into equitable consumption.” (279)

On some points, the authors seem to go a bit beyond their data. First, the authors assert (without citation) that mental health parity is “often” pursued “to benefit low-income and traditionally vulnerable populations.” (284) Many advocates (myself included) have argued for parity as a civil rights matter: as people with physical illness have access to insurance coverage, so should people with mental illness.  Certainly, insurance coverage is most valuable for those without the means to pay for care out of pocket, but that is as true for cardiac care as for mental health care. From this perspective, parity legislation seems no more a redistributive move than any other form of health insurance.

Second, and to distinguish parity legislation from other forms of insurance, the authors establish that the people of color and low-income insureds are less likely than others to take advantage of access to mental health practitioners. (298) Other researchers have pointed out the difficulty vulnerable populations have had gaining access to covered mental health outpatient care, even when their physicians attempt a referral, so this finding is uncontroversial. Does it follow from a finding that low-income people and people of color experience unequal use of and benefit from a covered service, that the coverage is illegitimate and should be curtailed? The logic of this assertion would call into question the continued coverage of cardiac services.  It might, rather, be wise to address the observed shortcomings in access to outpatient services for non-White and low-income patients and to seek the elimination of disparities here as elsewhere in the health finance and delivery system.

Third, the authors examine whether outpatient mental health treatment (as opposed to mental health treatment by primary physicians) is associated with a reduction in the rate of hospitalization for mental health services. They conclude that care from outpatient mental health providers does not reduce the rate of hospitalization for mental health care. (294) The authors here seem to argue that it would be unwise to “fix” the observed inequalities in access for the disadvantaged group, as the lack of association between outpatient mental health care and reduced hospitalization is weak. The authors, however, candidly acknowledge the limitations on using claims data to draw clinical conclusions, noting “unobservable heterogeneity of underlying health status” (294) and the possible “problem of unobserved severity.” (297) That being the case, it might be that the race and income disparities observed in access to outpatient mental health providers has carried though to other aspects of the mental health care system. For example, vulnerable low-income patients and patients of color might be unengaged in care, and therefore suffering with untreated mental health symptoms. Some employees or their dependents might be treated by the parallel public mental health system. It may be, in other words, that low-income people and people of color are poorly served by the mental health care system for reasons that have little to do with the efficacy of outpatient mental health care, notwithstanding their location in a university town.

The fragmentation of care for people with mental illness is an enormous public health and health finance problem. Much research needs to be done to approach the problem from all angles. The authors have done substantial work with an interesting set of claims data, and have creatively drawn links between patterns of usage and mental health outcomes.  As can be said of many forms of mental health treatment, their analysis fails to address the core issues.  But in such a difficult area of research, any advances are welcome.

Cross Posted at Concurring Opinions

Doctors, Patients and a Failure to Communicate

“What we have here is a failure to communicate.”  Fans of Cool Hand Luke (and who is not?) will recall the phrase in graphic detail–and for those of you without that memory, the video will provide.

A recent study highlighted in the Wall St. Journal’s Health Blog points to both a discrepancy in perception between hospital doctors and their patients and a failure to communicate.

The study was conducted by Douglas P. Olson, MD and Donna M. Windish, MD, MPH. The authors noted as “Background” in the study abstract that:

Hospital surveys indicate lack of patient awareness of diagnoses and treatments, yet physicians report they effectively communicate with patients. Gaps in understanding and communication could result in decreased quality of care. We sought to assess patient knowledge and perspectives of inpatient care and determine differences from physician assessments.

The results of the study were derived from two validated questionnaires given to inpatients treated by “house doctors” over a course of roughly eight months at one hospital.The corresponding doctors were also queried. Eighty-nine patients and 43 doctors participated.

According to WSJ:

The survey — which the authors note is limited by its reach (one institution), patient characteristics (older, indigent and less-educated than average), and general responses, rather than one-to-one-patient-physician comparisons — is published in the Archives of Internal Medicine.

The results? From the abstract:

• Only 18% of patients knew their main doctor by name.
• Sixty-seven per cent of doctors believed their patients knew them by name.
• Fifty-seven per cent of patients knew their diagnosis.
• Seventy-seven per cent of doctors believed their patients knew their diagnosis.
• Fifty-eight per cent of patients thought that physicians always explained things in a comprehensible way.
• Twenty-one per cent of doctors stated they always provided explanations of some kind.
• Sixty-six per cent of patients reported receiving a new medication in the hospital, 90% noted never being told of any adverse effects of these medications.
• Ninety-eight per cent of doctors stated that they at least sometimes discussed their patients’ fears and anxieties.
• Fifty-four per cent of patients said their doctors never did this.

Interestingly enough,the WSJ article notes that the

responses didn’t significantly differ by sex, age, race, language or payment source, for the patients, or level and type of training, for the doctors.

Only 57% of patients knew their diagnosis? Which is to say that 43% did not? 90% not told of potential adverse reactions to new medication?

Res Ipsa Loquitur.

Preliminary New Jersey Hospital Charity Care Budget Announced for FY 2011

New Jersey’s Department of Health and Senior Services released its preliminary data on charity care dollars for hospitals for Fiscal Year 2011: $665 million. Fiscal Year 2010’s total budget for such was $660 million, but $25 million of that was cut as part of mid-year budget reductions. If one counts the restoration of the $25 million cut prior, the increase amounts to $85 million.

In a press release announcing the preliminary data, Health and Senior Services Commissioner Dr. Poonam Alaigh said, “This funding increase clearly demonstrates Gov. Chris Christie’s commitment to maintain and strengthen the health care safety net for New Jersey’s most vulnerable residents when they need it most. Despite the state’s current fiscal crisis, the Governor has made charity care a priority.”

Some of the gains were wrought through the leveraging of increased assessments against hospitals for increased federal matching funds. According to the Daily Record:

To get the extra cash, Christie proposes to lift a cap that had limited a tax paid by hospitals; doing so increases the amount of federal matching funds the state receives.

In other words: To get the extra funds into the hospital system, hospitals have to pay $38.7 million in extra assessments. That puts hospitals as a whole $21.3 million ahead of the game — although extra dollars don’t necessarily flow back to the hospitals paying more.

Also according to the Daily Record, the reconfiguration and redistribution will leave 41 hospitals with more money, and 32 with less. The chart below lays out those details.

Obama’s Plan for a Health Care Summit and the Unenthusiastic Response

Last week, President Obama announced plans to hold a bipartisan health care summit to push forward on health care reform and to give both sides an opportunity to discuss ideas for health reform legislation that will be able to garner enough votes for passage.  While President Obama and Democratic Congressional leaders want to use the health care proposals that have already passed in the House and in the Senate, Republicans say that they are unlikely to vote for a bill unless the current proposals are scrapped and the process is started afresh.  It seems like Americans, once again, may be left watching the theatrics of the health care reform debate without actually being the focal point of it.

Some conservative Congress members have already responded to the President’s invitation publicly to make their steadfast positions known.  Representative Eric Cantor (R-Va.) said this past week that he was not willing to discuss a “health reform package that spends money we don’t have.”  He added that “House Republicans have offered the only plan that will lower health care costs.”  If that is true, it is likely attributable to the fact that the House Republican bill would cover only 3 million uninsured Americans, compared to the Democratic House bill which would  insure an additional 36 million Americans.

On Monday night, House Minority Leader John A. Boehner (R-Oh.) joined Cantor in submitting a letter to White House Chief of Staff, Rahm Emanuel, which said that the Republicans were not willing to come to the table unless certain prerequisite questions were answered.  You can see the whole letter here.  In the letter, Cantor and Boehner express their non-support for reform that the American people themselves are not supporting; the basis for such being the recent Republican Senate win in Massachusetts.

Exactly what are the citizens of American thinking about health care reform anyway?  CNN reported on Tuesday that nearly two-thirds of Americans want Congress to persist in passing health care reform legislation.  The poll, an ABC News/Washington Post survey, also indicates that Americans blame both Democrats and Republicans on their unwillingness to compromise.  HHS Secretary Kathleen Sebelius herself is quoted as saying, “When people look up close at the personal activities of Congress they are confused and disgusted with the whole process and too afraid that whatever is going on can’t possibly be good for them or their families.”

Many believe that the idea for the health care summit was to address the back-door processes that led to American distrust and to make it all more transparent.  Still, there appear to be more differences between the conservative version of reform and the liberal version than points of reconciliation.  Though the prolonged tug-of-war between both sides does not seem like one that might be resolved in a day of convening, the summit is, perhaps, at least a start.

And, while the political contenders decide what to do about the summit, the health reform stalemate has presently-occurring repercussions. Many hospitals, which were holding on to the hope of reform, are now at the point where downsizing their health systems is thought to be the only step left.  Hospitals all around the country have been seeing more and more uninsured patients, and with no one to cover the full cost of services, the hospitals providing unreimbursed care are said to be further sinking into debt– and must therefore cut staff as well as services.  On the individual level, Americans are also finding it difficult to  keep up with the costs of health care, and while many forgo insurance, those that cannot due to chronic illness or necessity of care are finding the cost further prohibitive.

It would make sense, then, that Americans do want reform.  Andrew Rubin, Vice President for Medical Center Clinical Affairs for NYU Langone Medical Center and radio show host for HealthCare Connect, says that one of the underlying reasons why Americans are reluctant to give support for legislation is their lack of understanding of what is happening, not because they do not want to see change.  Let’s hope that the proposed health care summit will be used to clarify issues for Americans who do need and want health care, instead of for just another political brouhaha.

Report: Uninsured Hospitalized Children Face a 6o Percent Increased Risk of Dying

Sometimes the numbers speak louder than words, and the words are just painful to hear: the New York Times’ Prescriptions reports that

Researchers analyzed data from more than 23 million children’s hospitalizations from 1988 to 2005.

Uninsured children who wind up in the hospital are much more likely to die than children covered by either private or government insurance plans, according to one of the first studies to assess the impact of insurance coverage on hospitalized children.

Researchers at Johns Hopkins Children’s Center analyzed data from more than 23 million children’s hospitalizations in 37 states from 1988 to 2005. Compared with insured children, uninsured children faced a 60 percent increased risk of dying, the researchers found.

On a regular basis writers on this blog have discussed health reform as a moral imperative: citing religious doctrine, philosophers, economists and statistics to show that health care, unlike the purchase of automobiles and designer shoes, is not correctly a conventional aspect of a market economy– that the distribution of healing and life itself should not be premised upon who is the best capitalist, or, for that matter, the child of the best capitalist. That uninsured hospitalized children face a 6o percent increased risk of dying says that in a way that I simply cannot add to. Lack of insurance kills.

The Times noted that “Although the research was not set up to identify why uninsured children were more likely to die, it found that they were more likely to gain access to care through the emergency room, suggesting they might have more advanced disease by the time they were hospitalized.”

According to the Times the study showed that “uninsured children were in the hospital, on average, for less than a day when they died.”

Which is to say that it was too late by the time they got there.

The Times noted that “Alison Buist, director of child health at the Children’s Defense Fund, a nonprofit advocacy organization,” said in response to the study’s findings:

If you wait until a child gets care at a hospital, you have missed an opportunity to get them the types of screening and preventive services that prevent them from getting to that level of severity to begin with.

The Times further noted that

The most common reasons for children being hospitalized were complications from birth, pneumonia and asthma. The study found that the reasons did not differ depending on insurance status.

Read the full NY Times article here.
Read the Report here.

Two New Reports Look at Increases in Health Care Spending

The Wall Street Journal reports that CMS estimates overall U.S. health care spending will reach $4.35 trillion in 2018, accounting for one-fifth of GDP. The findings by CMS were published Tuesday in the journal Health Affairs. In 2009, U.S. health care spending is expected to reach $2.5 trillion, a 5.5% increase from 2008.

The CMS study expects government health care spending to increase by 7.4% to $1.19 trillion this year. However, the study forecasts that, by 2016, the government will pay for more than 50% of total health care spending. The increase in government health care spending is expected to come from baby boomers enrolling in Medicare and increased enrollment in Medicaid.

Meanwhile, The New York Times reports that Medicare spending continues to vary widely across the U.S., according to a report to be published today in The New England Journal of Medicine.

According to The Times, Dartmouth researchers found that:

The regional differences in the growth of Medicare spending suggest doctors are helping to drive up costs when they more frequently order tests or admit patients to the hospitals. In areas where there are plenty of hospital beds and sophisticated imaging equipment available, doctors generally spend more on their patients.

Dr. Elliott S. Fisher, the director of the Center of Health Policy Research at the Dartmouth Institute for Health Policy and Clinical Practice and one of the work’s authors, told The Times that:

[A]ny attempt to rein in health care costs . . . needs to address how doctors and hospitals are paid, where they are rewarded on the basis of the volume of services they perform.

Read more

Hospitals Face Losses, Some Close

The Associated Press reports that hospitals are beginning to buckle under the weight of “tight credit, higher borrowing costs, investment losses and a jump in patients - many recently unemployed or otherwise underinsured - not paying their bills.” In response, there have been “more hospital closings…as well as layoffs, other cost-cutting and scrapping or delaying building projects.”

Tha A.P notes that “In November, Moody’s Investors Service changed its 12- to 18-month outlook from ’stable’ to ‘negative’ for nonprofit and for-profit hospitals, citing ‘prospects of a protracted recession,’ bad debt and the credit crunch.”

The article also notes that “many cash-strapped states already have begun cutting payments for poor people covered by Medicaid.” Tim Goldfarb, CEO of Gainesville-based Shands Healthcare–which just announced that it would be closing a hospital–said that “Florida started cutting Medicaid reimbursements two years ago, when its economy started to slow,” and that “he fears another huge cut next year.” Mr. Golfarb also reported that “his system, Florida’s second-largest provider of charity care, this year has seen bad debt jump 20 percent from patients with no insurance.” Read full story here.