Being there

Dr. Jeffrey Parks, a general surgeon from Cleveland, Ohio, recently blogged movingly about trying to save a 4-year-old child hit by a speeding car:

He lost his vitals the minute he arrived. He was blond and blue eyed and there was dirt under his fingernails and we were pumping his pale, frail chest and finally the trauma attending performed an ED thoracotomy. His tiny, little pink lung erupted through the wound and his heart fluttered uselessly in its pristine diaphanous sac.

Wanting to do something, anything, the team decided to open up the child’s abdomen in search of any internal bleeding or injuries that might be fixable.

“There was nothing,” Parks writes.

There was no blood. His little liver was beautiful, I remember thinking. Nothing to fix. The vitals never came back and the kid died right there in front of us all…

The thought that this child’s parents might have been present, witnessing the whole heart-wrenching experience, is “just outlandish to me,” Parks writes.

Should family be in the room while resuscitation is taking place? It’s an issue that has been under debate for several years, with strong opinions on both sides of the fence. Many hospitals don’t allow it, viewing it either as too much of a liability or too much for most laypeople to handle.

But the evidence doesn’t really support this position, a nurse writes in a journal article that appeared in 2005 in the American Journal of Critical Care.

Current evidence indicates that most families want to be present and would make the same choice again. Fears that codes would be disrupted and families tormented by adverse psychological trauma have not been substantiated.

Granted, the data are limited. Most of the surveys that have been conducted on this issue have involved relatively small numbers of participants, and the survey designs haven’t been consistent. Even with these limitations, however, families appear to be remarkably unanimous in their preferences for being present during resuscitation.

Among some of the findings: Most families believed it was their right to be present during resuscitation and found that being there was helpful to them and to the patient, especially when the patient is a child. For many of them, it was an important step in understanding the gravity of their loved one’s condition and knowing that everything possible was being done. Additionally, it did not appear to leave them with long-lasting traumatic memories. One study, conducted among families who had experienced the death of a loved one in the emergency room, found that 80 percent would have wanted to be in the room if this had been an option.

A slightly different picture emerges from surveys of emergency-room staff. Doctors and nurses worried that having families in the room during resuscitation would be disruptive. Many of them felt it would be traumatic for families to witness the resuscitation efforts, and that families would not be able to understand what they were seeing. Many of the doctors and nurses also were concerned about the added level of stress of having family members in the room during an already high-stress situation. And in one study, a majority of the respondents said they didn’t think family members would want to be present during a code. There were practical considerations as well; sometimes the room is just too small or crowded with equipment to allow anyone else inside.

Despite these reservations, however, many of the emergency-room personnel who’ve been surveyed say they would always respect the wishes of the family to be in the room. Many also say they would consider inviting the family to the bedside, as long as the circumstances could be controlled. More recently, a number of hospitals have begun developing policies to help guide the staff when families want to be present during resuscitation.

Some of this ambivalence is reflected in the comments to Dr. Parks’s story. “Family in the trauma room is just asking for lawsuits,” one person wrote. “When chest compressions start cracking ribs, I can’t imagine wanting to be in the room if it was my family member. It was bad enough doing the chest compressions.”

Resuscitation during trauma or a code “is no place for a loved one,” someone else agreed. “I think that when people see this stuff on ‘ER’ or ‘Grey’s Anatomy’ without the blood and guts everywhere, it seems rather benign. The reality is far different.”

Another commenter had a different perspective:

I generally don’t like having the family in the room initially – particularly if a procedure needs to be done. But once the tubes and lines are in I am certainly OK calling in the family to witness what almost always amounts to the end of the CPR (as they do whether or not the family is present). Usually I bring them in towards the end so they can take it all in and say goodbye while they are technically “alive” (only because I haven’t called the code yet). No idea if it helps them, but they seem to like the opportunity.

There’s often a disconnect between what health care workers think patients and families want, and what patients and families actually do want. Under some circumstances, families might truly not belong in the room while a loved one is being resuscitated. More study is probably needed to identify when this could be the case. Does it make a difference if traumatic injuries are involved? Does the patient’s age make a difference? Does it make a difference if the patient survives? All things being equal, however, it appears that many families do indeed want the option of being present at some point during resuscitation, and the health care community would do well to figure out how to support them when this is their choice.

West Central Tribune photo by Ron Adams

Getting serious about participatory medicine

There was fanfare in certain circles last week with the official launch of the Journal of Participatory Medicine. This new academic journal is the first to devote itself to studying the best ways of inviting and enabling patients to participate in their own health care.

You’d think patient empowerment would be rather easy to nail down. The term is frequently tossed around by health care organizations, advocacy groups and by consumers themselves. Most people think it’s generally a good thing for patients to be educated about their health and involved in the decision-making, and the research suggests that patients have a better outcome when they can participate in their care.

When you dig a little deeper, however, it starts to get murky. Should patients participate in all the decisions? Or are there some issues that require the doctor’s expertise to decide? What if doctors and patients don’t agree on the right course of action? How much should the physician’s training and experience weigh in the balance? What if patients want a drug or a treatment that goes against all the available clinical evidence? What if patients are misinformed or incompletely informed? Does participatory medicine always lead to better health for patients, or are there pitfalls and unintended consequences that haven’t yet been identified?

The Internet has opened the doors to a vast sea of information. For the first time, it’s not just the professionals and the academics who have access to studies and medical journals. Ordinary people now have access to these too, and it has shifted the power equation in ways that we’re just beginning to assess and figure out how to deal with.

It no longer seems to be a black-and-white question of whether participatory medicine is good or bad. This particular genie is already out of the bottle. As the Society for Participatory Medicine explains in the announcement of its new publication, “the journal’s mission is to transform the culture of medicine by providing an evidence base for participatory health and medicine.” In other words, this is the direction in which we should be headed, and we ought to learn how to do it as well as can.

The introductory issue contains several thought-provoking essays. There’s one on “Why Participatory Medicine?” and another on “Why the Journal of Participatory Medicine?” There’s also a view from a patient and an examination of what the research agenda should include.

Although participatory medicine is a two-way street, patients seem to have farther to go in order to fully be able to participate in their care, writes Kate Lorig, who provided the patient’s perspective.

The first point of contact should allow participation.

Most of our health care encounters, that aren’t in the physician’s office, are with a phone call or occasionally, a Web site visit. Our intelligence and patience are tested by having to listen to automated messages and pressing numbers and then waiting and pressing more numbers and waiting… If we pass that test we might actually get to talk to a person. However, that person is usually a clerk offering a limited range of options. If our needs fall outside of that range, one of two things happen. We either are scheduled to come in and talk to someone with more expertise, usually requiring time off from work, or we have to start all over again. Such strategies to screen and triage our concerns are discouraging. While this approach may prevent some unnecessary care, from my experience this can be dangerous and also costly – not only to me – but to my employer and my insurer. A clinic, practice or hospital that endorses participatory medicine will always welcome me.

Medical practices and centers should be clear about the rules of engagement.

Depending on the kind of care we seek, it may need to take place the same day we call or we may have to wait for months. We are seldom asked about our perception of urgency, given an explanation of the scheduling system, or even told that we might get an earlier appointment if there is a cancellation. (I’ve found that this latter information seems to be secret, but with effort and experience, we may discover.) How can we participate in our care if we are kept in the dark about the basic rules of engagement? A clinic, practice or hospital that endorses participatory medicine will tell me how I can best make use of its services.

Participatory medicine demands that patients also take responsibility for asking questions, communicating their concerns and following through on treatment plans, Lorig says.

I predict there’s going to be a fair amount of ambivalence about participatory medicine. Not all patients are able, or willing, to participate in their care at a high level – reading medical journals on the Internet, for instance, or compiling their own online copy of their entire medical record. Despite the growing numbers of patients who are empowered and technologically savvy, it’s not clear to what extent they might become the majority.

There’s also the question of how much patients should be expected to shoulder. Dr. Bob Wachter, one of the foremost patient safety czars in the U.S., wondered about this recently on his blog and confessed he has “several reservations” when it comes to patient involvement in safety, one of the subsets of participatory medicine:

The first is that it might not work, or might even hurt. In the early days of “sign your site,” before the process was standardized, patients often tried to be helpful by marking their own limbs before they went under the knife. Unfortunately, some patients marked the limb to be operated on, while others marked the limb to be avoided. As you might imagine, this kind of anarchy introduces new possibilities for errors.

Second, even if the well-informed and alert patient or loved one can help prevent some errors, too many patients lack the resources to act as advocates for their own safety. Particularly in the hospital, many patients are confused, anxious, or sedated or have language differences, health literacy challenges, or no involved family members. This uncertainty means that relying on a strategy of patient engagement will always be a crapshoot.

And what about health care professionals? In order for participatory medicine to gain more ground, the professionals will have to become comfortable with the concept, and perhaps be more willing to cede some of their power.

The road ahead is certain to be bumpy. There will probably be disagreements. There will probably be some surprise findings that reshape what we think we know about participatory medicine. Overall, though, participatory medicine is a trend we should welcome and one we’ll be hearing about much more often.

Health care professionals behaving badly

In one real-life case, an anesthesiologist failed to monitor a toddler who was being sedated in order to install a femoral IV line. Then he didn’t use sterile technique and contaminated the needle – and when an experienced nurse attempted to stop the procedure, heated words were exchanged, the doctor grew angry and threw the needle on the floor.

In another case, an orthopedic surgeon in residency training insisted on scheduling an elderly patient for surgery, despite concerns by the patient’s cardiologist that he was too fragile for the procedure. When a nurse questioned the surgeon’s judgment, he told her she was “stupid” and that the cardiologist’s concerns were nothing to worry about.

Both cases appear in the October edition of the Agency for Healthcare Research and Quality’s online morbidity and mortality rounds, and illustrate how challenging it can be to care for patients safely when disruptive behavior by health care professionals gets in the way.

To be sure, no workplace is immune from angry outbursts, harassment or bullying among employees. But when it happens in a health care setting, the stakes are much higher, as one of the commenters on the AHRQ’s case studies explains:

Although efforts to improve relationships among health care professionals have been under way for many years, the patient safety movement has given them greater urgency. It is clear that teamwork, communication, and collaboration enhance patient safety and quality. Yet patterns of disrespectful, disruptive, or hostile behavior remain significant issues in health care, leading to increased medical errors and sentinel events.

There’s a serious movement within health care to foster more civility among the players. The Joint Commission, which accredits the majority of hospitals in the United States, went so far as to issue a sentinel event alert last year, warning that “overt and passive behaviors undermine team effectiveness and can compromise the safety of patients.”

All the evidence suggests these types of incidents are far from rare. A few years ago, Rice Memorial Hospital surveyed its own workforce in an attempt to get a handle on the frequency of disruptive behavior, the severity and what tended to trigger it.

Among the findings: More than half of the 300 employees who participated in the survey had either witnessed or been the target of bad behavior.

Serious incidents, such as physical threats, weren’t common. But disrespect, failing to take responsibility, blaming others, and allowing disagreements to go unresolved were all high on the list. For the most part, these incidents weren’t widespread; they also generally involved a relatively small percentage of nurses and the medical staff, suggesting that individual personalities might be an important contributing factor.

How did disruptive behavior become part of the health care culture? Part of it probably stems from the high level of pressure that health care professionals often endure. Rice Hospital’s survey found, for instance, that bad behavior was more likely to occur in unexpected situations, such as when a patient’s condition suddenly deteriorates. Fatigue also probably plays a role, as do the pressures of cost containment, productivity and the ever-present threat of lawsuits.

There has been a tendency among health care organizations to look the other way when bad behavior occurs. It’s human nature to want to avoid confrontations. Employees don’t always want to speak up because they fear retaliation or they fear being labeled as a troublemaker. The Joint Commission also points out that “staff within institutions often perceive that powerful, revenue-generating physicians are ‘let off the hook’ for inappropriate behavior due to the perceived consequences of confronting them.”

It has only been within the past few years that disruptive behavior by health care professionals is being talked about more openly. Organizations are being urged to educate their staff on what constitutes professional behavior. Rice Hospital was an early adopter of policies that spell out a code of conduct and provide a pathway for addressing uncivil or unprofessional behavior among the medical staff, both of which became Joint Commission requirements on Jan. 1 of this year.

Where do patients and families fit into this? Although most of the public discussion about disruptive behavior among health care professionals centers on their interactions with each other, it’s hard to imagine this behavior wouldn’t spill over into their interactions with patients and families as well.

The AHRQ case studies don’t tell us whether the patients or families in these cases were aware of the conflict among the professionals who were supposed to be caring for them. Did the parents of the sick toddler know about the anesthesiologist’s temper tantrum? Did they overhear the altercation between the doctor and the nurse? If so, how did they feel about it?

Most health care professionals do behave professionally most of the time. According to the Joint Commission,

The majority of health care professionals enter their chosen discipline for altruistic reasons and have a strong interest in caring for and helping other human beings. The preponderance of these individuals carry out their duties in a manner consistent with this idealism and maintain high levels of professionalism. The presence of intimidating and disruptive behaviors in an organization, however, erodes professional behavior and creates an unhealthy or even hostile work environment – one that is readily recognized by patients and their families. Health care organizations that ignore these behaviors also expose themselves to litigation from both employees and patients.

Behaving badly, then, is a burden that’s shared by everyone involved, with consequences for everyone involved.

Update, Nov. 3: The latest issue of the Physician Executive journal contains a special report on this issue, including the results of a new survey showing the pervasiveness of disruptive behavior, its impact on patient safety, and some of the challenges of addressing it.

Graphic courtesy of Rice Memorial Hospital

The responsibility thing

I made a trip to Rice Memorial Hospital this morning to talk to someone for a story I’m working on. The minute I entered the lobby, a volunteer stopped me and asked if I was there to visit a patient. I wasn’t, so I declined the mask and hand sanitizer, but now I wonder if I shouldn’t at least have sanitized my hands just to be careful.

The growing spread of the H1N1 novel influenza virus seems to be demanding that all of us take more personal responsibility than ever before.

I mean, think about it. We’re supposed to wash our hands, and wash them often. We’re supposed to stay home if we’re sick. We’re being asked to cover our coughs and sneezes. We’re being asked to wear a mask if we’re visiting someone at the hospital. We’re being asked to think twice before going to the doctor or the emergency room unless we’re truly ill. We’re being urged to get flu shots.

These messages have always been out there and they’ve always been important for preventing the spread of flu and other germs, but they’ve gained even more urgency with the arrival of the H1N1 virus. When local health officials hosted a seminar last week for employers on dealing with influenza in the workplace, it was one of the first times I’d seen this level of effort to educate and engage the business community in limiting the spread of illness.

Face it, it’s not always easy to get the public on board – not just for influenza but for general health-related behaviors as well. People are busy. They multi-task and/or procrastinate or forget. Oftentimes they’re just not sufficiently clued in. Like exercise or eating fresh fruit, hand washing requires a mindfulness that can be hard for the average person to sustain, especially beyond a few weeks.

To their credit, local health providers have been proactive – aggressive, even – about educating the public, making sure there are opportunities to get flu vaccinations, and taking preventive steps such as asking sick people to wear masks. Is it helping? It’s hard, maybe even impossible, to know, but the fact that providers haven’t been overwhelmed (yet) with sick patients suggests they’ve been at least somewhat successful.

All the prevention messages in the world don’t do much good, however, if people don’t take some responsibility for heeding them. The next time I’m at Rice Hospital, I’m going to use the hand sanitizer. Just to be careful.

West Central Tribune photo by Anne Polta

To screen or not to screen

The message in a New York Times story earlier this week wasn’t one that the American public is accustomed to hearing: namely, that the benefits of cancer screening have been overstated and that even the American Cancer Society is rethinking its longtime advocacy of routine screening. It quoted Dr. Otis Brawley, chief medical officer of the American Cancer Society, as saying, "… I’m admitting that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated."

It didn’t take long for the reaction to follow. One science journalist called it "a bombshell, if true."

The American Cancer Society issued a statement from Dr. Brawley the next day, clarifying its stance:

While the advantages of screening for some cancers have been overstated, there are advantages, especially in the case of breast, colon and cervical cancers. Mammography is effective – mammograms work and women should continue [to] get them…

The American Cancer Society stands by its recommendation that women age 40 and over should receive annual mammography, and women at high risk should talk with their doctors about when screening should begin based on their family history.

The bottom line is that mammography has helped avert deaths from breast cancer, and we can make more progress against the disease if more women age 40 and older get an annual mammogram.

Since 1997 the American Cancer Society has recommended that men talk to their doctor and make an informed decision about whether or not prostate cancer early detection testing is right for them. This recommendation also still stands.

Did the New York Times article get it wrong, then? No one has actually come right out and said so. Some observers have already labelled the whole thing as a controversy, while others are dissecting it more thoughtfully.

In truth, there are many nuances when it comes to weighing the pros and cons of screening and early detection for cancer, explains Dr. J. Leonard Lichtenfeld, deputy chief medical officer for the national office of the American Cancer Society. He blogged a response that outlines some of the complexities:

… Developing and accurately promoting guidelines are complex processes that don’t lend themselves to sound bite messaging. They are also a "living process" that requires continuing assessment of the evidence, and changing guidelines when the evidence warrants it. They are not written in stone for all time.

He adds that "different experts can look at the same data and come to different conclusions."

It’s confusing for the public, acknowledges the New York Times in a followup article:

While the limits of cancer screening have long been known in the prevention community, the debate is new and confusing to many patients who have been told repeatedly to undergo screening mammograms or annual blood tests to gauge prostate cancer risk.

"The health professions have played a role in oversimplifying and creating the stage for confusion," said Dr. Barnett S. Kramer, associate director for disease prevention at the National Institutes of Health. "It’s important to be clear to the public about what we know and be honest about what we don’t know."

Amid the fallout of this much-discussed news story, there’s a very real risk that many people will misunderstand, focus on only one portion of the message, or not get it at all. Overall, though, I don’t think it’s necessarily a bad thing that this discussion is taking place – and that the discussion is happening on a broader, more public stage. You could say in fact that it’s overdue. When we have a better understanding of the risks and benefits of screening, maybe we’ll be in a better position to accept its limitations and to make decisions that are more informed.

West Central Tribune file photo

Lost in the fog of dementia

When you see the numbers, they’re more than a little staggering: as many as 5 million Americans living with Alzheimer’s disease and other forms of age-related dementia, 9.9 million unpaid caregivers (typically a spouse or other family member), $148 billion in annual costs.

In this sea of statistics, Jennings and Clarice Sunderland are mere pinpoints, yet their story is a compelling illustration of the challenges that families – and society – are up against when it comes to age-related dementia.

By now, many Minnesotans have probably heard about the Sunderlands, who live in northern Minnesota on a dairy farm near Bagley. Clarice, a retired nurse, has Alzheimer’s disease. As the Minneapolis Star Tribune relates, she “began wandering this summer, so Sunderland would settle her in a chair in the barn while he and his son, Kurt, milked the cows, or take her along in their pickup to the fields.”

At home in the late afternoon, he had the chain.

Tired from the chores he began before dawn, Sunderland, 78, would settle in his recliner beside his wife of 58 years, watch TV, and sometimes fall asleep. To keep Clarice close, he looped a length of chain around her and her chair, the other end in his hand. “If she started to get up or lift off that chain, well, it rattled and woke me up,” Sunderland said. “It was a pretty good idea, I thought.”

Clearwater County authorities did not agree with him. Apparently alerted by Sunderland’s brother, who was concerned about the situation, two sheriff’s deputies and a social worker showed up at the house this past August. Clarice Sunderland was moved to a nursing home. Her husband, charged with false imprisonment, spent the night in jail.

He could have been convicted and sentenced to up to three years in jail, but the charge was dropped this past week. At last report, the family is making arrangements to bring Clarice home and to line up daily visits by a home health worker. They’re also reportedly looking into a wireless security system that will alert them if Clarice wanders.

The case is being called an example of the desperation experienced by many families trying to care for a loved one with Alzheimer’s. What if you want to keep your loved one at home but don’t have the knowhow to provide safe, appropriate care? What if you can’t afford a paid caregiver? What if you live in an isolated rural area with few services nearby?

I think the Sunderlands’ story is an example of something else as well: the utter lack of preparation that many families have for dealing with Alzheimer’s and other age-related dementias. There is no dress rehearsal, after all, for something like this. Many families simply have no clue what to expect or what to do. As the disease worsens, or as behavioral issues such as wandering or aggression begin to develop, they are left helpless. They might not even know how to find out if there are any local resources to help them, let alone know how to tap into those resources and put together a plan. For people who have been self-reliant all their lives, there’s an additional barrier: They’re often reluctant to admit they need outside help.

Here in west central Minnesota, we’re fortunate that a network is being developed to help knit together some of these gaps. The West Central Dementia Awareness Network has only been meeting formally for a few months but it already is working to increase awareness of the resources available and to help make sure caregivers receive adequate support. The group also is pushing for earlier diagnosis of Alzheimer’s disease so families have a better ability to plan for their future.

The regional group, whose members include organizations that provide services and care to the older population, is officially introducing itself to the community this coming Tuesday, Oct. 27, with a series of events at St. Mary’s Church in Willmar. Virtual tours of what it’s like to have dementia will be available from 9 a.m. to 5 p.m. (registration is required; call the Willmar Community Senior Network at 320-214-7140). Free memory screenings also will be offered from 4 to 7 p.m., no appointment necessary. A representative of the Alzheimer’s Association will give a presentation at 7 p.m. on understanding Alzheimer’s disease.

As one of the members of the group put it, “We’re just trying to help people become more aware.”

For what it’s worth, many of the critics have been unduly harsh on the Clearwater County authorities for how they handled the Sunderlands’ case. Should Jennings Sunderland have been taken to jail and his wife removed to a nursing home where, as it turned out, the care was less than adequate? The answer is no. Compassion, not heavy-handedness, was called for here. But chaining a 76-year-old demented woman to her chair is not something that ought to be condoned either, regardless of how devoted or how desperate her spouse was.

Most families want to do the right thing. Unfortunately they don’t always know what the right thing should be. It’s hard to imagine the Sunderlands are an isolated case or that there aren’t other families who are overwhelmed to the point of neglecting or endangering an aging loved one who has dementia. Community and regional strategies to help ensure these people don’t fall through the cracks are something that’s long overdue.

West Central Tribune photo by Gary Miller

Linkworthy 1.3

A roundup of some interesting/thoughtful/informative reading I’ve encountered online lately:

If you haven’t already checked out the Kaiser Health News series "Are You Covered?", take the opportunity to do so. It covers the whole range of health coverage – the federal employee health plan, gold-plated plans, Medicare, Medicaid, the individual market and more. This excellent series, which is co-produced by NPR, also includes video and interviews with people about their experiences with their health coverage.

MinnPost has a couple of good reads published in just the past week. First, there’s an in-depth look at General Assistance Medical Care, Minnesota’s publicly funded health program for impoverished adults who don’t have children. The program was axed by Gov. Tim Pawlenty earlier this year during the state budget unallotment process. Its elimination doesn’t take effect until next year but, as MinnPost reports, time may be running out to find an alternative.

Pity the poor pig who came down with a case of swine flu at the Minnesota State Fair. What exactly is the story with inter-species transfer of the influenza virus? If humans, pigs and birds can share their influenza, why doesn’t my cat get sick too? MinnPost offers an interesting examination of the science behind this question.

For years, the mantra has been to screen, screen, screen for cancer. Increasingly, however, the evidence shows that the benefits of cancer screening have been overpromoted. Even the American Cancer Society, which has long championed the need for screening and early detection, is now starting to back off on this message. The New York Times explains what led to this change of heart and explores the difficulties of conveying it to the public.

It’s not uncommon to hear people boasting about how they "fired" their doctor. They shouldn’t get overly smug about it because doctors sometimes fire their patients too. No matter who initiates it, though, ending the relationship is hard to do, Dr. Rob Lamberts laments in "Breaking Up."

"The Exam Room – Three Views" is short but poignant. This vignette by a Minnesota physician was one of the honorable mention winners in Minnesota Medicine magazine’s annual creative writing contest and appears in the October issue online. No one in this fictional exam room is happy to be there, and I’m pretty sure they’re going to be even unhappier by the time the encounter is over.

Finally, from the sWell blog by Dr. Rahul Parikh, comes this story of "Regina Holliday and the Art of Health Care Reform." Regina Holliday is an art teacher and painter whose husband died of kidney cancer last year at the age of 39. Dr. Parikh writes:

The Hollidays’ experience is a case study in the ugliest, most festering problems of American health care. To share that horror story and to advocate for change, she began painting a portrait of a health care system that is fragmented and insensitive. It is a system where caregivers like Regina have to unfairly shoulder many bureaucratic burdens and one that needs to treat people better than the way it did her husband.

When we talk about health care reform, are we talking about changing the way patients and families actually experience health care? Or are we only talking about money and policy? Which of these is more important? Read the story to find out how Regina Holliday might answer this question.

Uninsured and out of options

For the past couple of years I’ve been following the story of Jeannine. We belong to the same online discussion group. Jeannine is in her late 30s, lives in Los Angeles and works as a medical records transcriptionist. Five years ago she was diagnosed with marginal zone lymphoma in one of her salivary glands. It’s slow-growing and was treated in 2004 with radiation.

A few months ago, problems started to develop with her other salivary gland. For most people, this would mean a visit to the doctor, a referral to an oncologist and some diagnostic work such as a PET/CT scan and a biopsy.

Not for Jeannine, because she’s been uninsured for the past four years. 

It has truly been eye-opening to watch her perspective unfold. When I read her posts (she doesn’t post often, perhaps only once or twice a month, and there’s no reason to think she’s a fake or an Internet troll), the strongest impression I get is of someone trapped in a corner with no way out. Here’s something she posted earlier this year, worrying about whether she’d be able to pay out of pocket for a PET/CT scan:

My CT/PET in 2005 while I had insurance was about $5,000. Now I don’t have enough on my credit cards to pay that, will they allow me to make a deposit of say $100 or so and bill me for the rest? Or will they demand full payment up front before they’ll even do the scan?

She ended up putting the cost, around $2,500, on her mother’s credit card. And she had to make the full payment up front.

More recently she’s been having problems with her teeth, at least partially due to the radiation to her neck and jaw. She writes, "I consulted with 3 dentists here in LA and none will see me pro bono and they had no connections or solutions… I am completely tapped as far as credit."

There’s sometimes an assumption that the uninsured either aren’t trying hard enough to find coverage or just don’t want to pay for it. What I’ve been learning from Jeannine’s story is that even when help is available, it often comes with eligibility guidelines and many people simply don’t qualify. Jeannine writes that she’s single and child-free and earns about $20,000 a year. "I apparently do not qualify for anything at all," she writes. "I am stuck in the middle. The poverty level in CA is $14,500 a year."

If she lived in Minnesota, she might be a candidate for MinnesotaCare, the state’s subsidized program for the uninsured. But she wouldn’t automatically be eligible; she would have to live in Minnesota for a minimum of six months and be uninsured for at least four months, and she couldn’t work for an employer who offered health insurance and covered 50 percent or more of the premium. She might also be a candidate for the Minnesota Comprehensive Health Association, the state’s high-risk pool for people who are otherwise uninsurable. Here again, however, she’d have to qualify. And state laws allow MCHA to charge a higher premium than the rest of the marketplace – a premium that many people might not be able to afford.

Even these types of programs for the hard-to-insure are not a sure bet. Many of them in fact are under fire, often because of runaway costs. TennCare, for instance, was at one time lauded for helping Tennessee achieve nearly universal coverage, but the state eventually had to rein in the program and cut people from the rolls, leaving them uninsured once more.

Jeannine has tried to buy health insurance on her own, but because of her health history she’s either turned down or quoted a price there’s no way she can afford. She’s looked into the possibility of joining a clinical trial but there’s nothing at this point for which she’s eligible. Someone pointed her in the direction of a nonprofit cancer organization that offered financial support in the form of a one-time check for… $150. No, there is not a missing zero or two in that figure.

Although we’d like to think that nonprofits and charity organizations are helping to meet some of the needs of the uninsured, the reality is that they’re overwhelmed with demand. A couple of months ago Jeannine attempted to get into a free eight-day clinic being held in Los Angeles for the uninsured. She reports:

I waited in line for many hours before being told they had reached their max amount of people that they could help and was turned away – I only had one day off that week to do this, yet the demand was so great that I was too late, and this was only on day 2 of the event. They had already reached their full capacity, they came out and told everyone they could wait, but the likelihood of someone not showing up was probably zero, so don’t waste your time.

There’s a belief that the uninsured are clogging up emergency rooms across the United States because ERs are one of the few places where they won’t be turned away. In reality, they’re not among the majority of emergency-room users; the most recent estimate puts those without insurance at about 20 percent of all emergency-room patients. Most of the time they aren’t using the emergency room as a substitute for regular medical care; usually they’re there because a chronic or non-urgent problem has gone unattended and has mushroomed into something acute.

I think the biggest lesson I’ve learned from Jeannine is how it feels to be uninsured:

… I am holding off far too long for medical care because of not just the fear of large bills but the absolutely unbelievable feeling of shame that comes attached to it. The looks and reactions I get are that somehow it is my fault, that I must have been irresponsible and somehow I deserve to be uninsured.

She has been MIA from the discussion group for a couple of weeks so I don’t know right now how she’s faring. She seems smart and savvy, and I can’t help wondering how someone could fall so completely through the safety net. One of these days her cancer will likely progress to the point of needing treatment, and I have no idea how she’ll be able to manage it.

A virus by any other name

Some people call it H1N1. Others refer to it as swine flu. Still others call it novel influenza.

You’d think it would be a straightforward matter for scientists, public health experts and the general public to agree on a name for the new worldwide influenza virus that emerged earlier this year. But it hasn’t been straightforward or simple at all.

Reporters for the Associated Press dug into this issue awhile back and reached the conclusion that the virus everyone is talking about is indeed "pretty much all pig."

Six of the eight genetic segments of this virus strain are purely swine flu and the other two segments are bird and human, but have lived in swine for the past decade, says Dr. Raul Rabadan, a professor of computational biology at Columbia University.

A preliminary analysis shows that the closest genetic parents are swine flu strains from North America and Eurasia, Rabadan wrote in a scientific posting in a European surveillance network.

So does this mean it’s accurate to continue calling it swine flu, as the majority of the media and the public are doing? Not so fast, say U.S. health officials. One CDC scientist suggests the correct term is "swine-like." "It’s like viruses we have seen in pigs, it’s not something we know was in pigs," says Michael Shaw, associate director for laboratory science at the CDC. Another scientist doesn’t think swine flu is an accurate name either, although for a different reason: This new virus spreads quite readily from person to person, while traditional swine flu does not.

As far back as last spring, the World Health Organization said it would stop calling the virus swine flu, citing concerns that the name is misleading and that it implies, incorrectly, that pork is unsafe to eat. Unfortunately it hasn’t stopped some panic, especially overseas, that has resulted in painful economic ripples among the U.S. pork industry. And the virus is still often referred to as swine flu, although it’s also increasingly being called H1N1 or, more formally, 2009 H1N1. (The initials derive from the names of two of the proteins, hemagglutinin and neuraminidase, found in the outer coat of the influenza virus.)

What about the common practice of designating various influenza strains by the geographic area – Sydney, Hong Kong, etc. – in which they were first identified? In some of the earliest news conferences with the Minnesota Department of Health, state health officials called this "North American flu," since its first appearance seemed to be on the North American continent. I don’t hear this term very much any more, however, and in fact some of most recent information from the WHO suggests that no one really knows where this particular form of the flu virus may have originated.

At some point last May I started using the term "H1N1 novel influenza," or H1N1 for short, in keeping with the Minnesota Department of Health’s terminology. The word "novel" is important because other influenza viruses also contain H1N1 genetic markers - but not in the particular combination the swine flu/2009 H1N1/novel virus contains.

Is this the most accurate or descriptive term for the virus everyone is talking about? I’m not sure. But for now, it seems to be the best we have and it’s the term I’ll continue to use until a new or better one comes along.

West Central Tribune file photo