Top 10 rural issues for health care reform

In the national discussion on health care reform, it’s important not to ignore or overlook the needs of the rural United States, contends the Center for Rural Affairs.

The think tank has put together a list of the top 10 issues that deserve consideration. The paper’s author, Jon M. Bailey, suggests using it as a checklist against which bills and policy proposals can be evaluated.

Here are Bailey’s top 10:

- Health insurance access and affordability, especially for small businesses and the self-employed.

- The strength of publicly funded health programs such as Medicaid and SCHIP, on which many rural residents rely.

- The rural health care delivery system.

- The rural health care work force.

- The needs of rural seniors.

- Access to health care services and coverage for rural people who have chronic conditions and/or disabilities.

- Preventive care and wellness resources.

- Access to mental health services.

- Health information technology.

- Emergency medical services.

If you’d like to weigh this list against the White House’s current proposals for health care reform, you can read more extensively about the Obama administration’s priorities at HealthReform.gov. And there’s more information at the Center for Rural Affairs Web site about its own agenda for health care reform.

Waiting too long to call hospice

Over the years I’ve spoken to many people who’ve had a family member spend his or her last days in hospice care. Unanimously, they’ve found it one of the best decisions they could have made. Many of them, however, said they wished they had done it sooner.

Why do people wait to call hospice? Author Paula Span tackles this issue in a guest post on the New Old Age blog for the New York Times.

"Sometimes, simple misconceptions are to blame," she writes.

People may think of hospice as a place rather than a service that aims to let people die in their homes. (A few hospices also operate residences.) Or they think hospice is for cancer patients, though in fact the majority of those in hospice have other terminal illnesses.

And sometimes families have a hard time letting go, Span says.

So even if your physician will sign the form saying that in her best judgment, death is likely to occur within six months if the disease follows its normal course — and that’s all that’s needed to enroll in hospice — often it’s the children who can’t bear to acknowledge that a father probably won’t rebound this time, that a mother is dying.

So families wait. And the parent dies anyway — maybe in pain that could have been eased, maybe with fears that could have been assuaged or lessened had hospice workers been able to offer more than brief crisis management.

 The discussion thread adds a dimension of personal experience and views on hospice care. Not all of it is positive. One person called it "a nightmare from start to finish." Others complained about excessive paperwork and insensitive staff. "All in all, we had no sense our hospice helpers were angels. They muddled through the experience, as we did," one commenter said.

Overall, however, most of the comments were favorable, such as this one:

Our hospice experience was most positive and provided my wife with a pain free, peaceful death. I knew nothing of hospice care before her illness. I am so thankful they were recommended to us.

For yet another perspective, here’s a guest column by oncology nurse Theresa Brown that appeared recently in the Well blog at the New York Times.

The patient, a woman in her 40s, was suffering, Brown writes, but although she had agreed to not be resuscitated if her heart stopped, she and her family wanted her to continue receiving antibiotics and blood products.

What should be done in a case like this? Brown called the doctor "and expressed my deep misgivings with the plan of care." After a conversation with the doctor and family, a decision was made to send the patient home with hospice care.

The ensuing comment thread contains an interesting ethical debate on who should make these kinds of end-of-life decisions. An intensive care nurse writes:

Would I want someone else to determine whether my life was worth saving? I believe that only you can know when it is time, and how much you wish to suffer. The lady in the article obviously knew and was already in pain before she was admitted. Yet, she wanted to live a few days more. You can grouse about the cost of treatment, but I do not believe you can begrudge her her sacred decision to live, despite her suffering. Perhaps at some point she would have given up, but maybe not. But, would you not want that choice?

Brown’s essay sparked almost 300 comments, and the thread is worth the time it takes to read it. The lesson here, if there is one, is that people tend to face death in their own way and their choices need to be respected, even if they happen to conflict with our own beliefs and values.

When a teenaged patient says no

Is it ever OK for a patient to refuse medical treatment? What if the patient is a child or a teen? What if it’s the parents who are refusing treatment on their child’s behalf?

These are some of the issues that’s swirling around the story of Daniel Hauser, the 13-year-old from Sleepy Eye whose mother has fled the state with him to avoid chemotherapy for his Hodgkins lymphoma.

Blogger Amy Rea, from Other Voices at the Star Tribune of Minneapolis, sees this as an important case for medical ethicists:

Where is the line drawn? When is it OK to let a family – or boy – choose to refuse medical care for their likely terminally-ill child, when treatment would most likely save him?

One of the questions that has been raised is whether Daniel Hauser, at 13, is old enough to understand his diagnosis and treatment and give informed consent. If part of the maturation process is allowing adolescents to become more independent and make their own decisions, should this extend to medical self-determination?

 There have been other cases of teenagers who have turned down cancer treatment – Abraham Cherrix, for one, whose decision was upheld by a judge in 2006. Abraham was 16, however, as was Billy Best, who ran away from home in 1994 to avoid continuing chemotherapy. And there’s also the issue of Daniel’s inability to read, which arguably makes him more vulnerable and less able to understand his disease and treatment in a way that would allow for informed consent.

These are not easy issues to address, as participants in a Harvard Medical School medical ethics seminar found out a few months ago. They were divided on whether to involve the court system on forcing a teen to undergo cancer treatment.

The seminar was divided, much as society is. One group, including students with a libertarian bias, couldn’t stand the idea of a 16 year old who loved being alive dying an avoidable death. This group would turn to the court. Others were impressed with Billy’s thoughtfulness and the fact that his parents loved him, understood what the doctors were saying, but supported his choice. They took Billy’s stand to reflect an informed consent that should be respected. This group proposed to follow Billy, hoping for the best, but intending to negotiate with him if the cancer progressed.

But to Dr. Arthur Caplan, one of the foremost medical ethicists in the United States, the Hauser case, at least, is "not a tough call for me."

"Parental rights are strong, but they do have a limit when you’re basically sacrificing your child for a religious belief that they themselves can’t articulate," he said. Caplan and CNN legal analyst Jeffrey Toobin discussed the Hauser case this week with CNN’s Anderson Cooper in a Q and A that’s worth reading.

Caplan, and the doctors who testified earlier this month at a child protection hearing in New Ulm, said that even though Daniel Hauser has said he’ll physically fight any cancer treatment, this seldom actually happens.

What’s key is to get at least one family member on board, Caplan said. "When you’re really up against it and you start to realize the doctors are saying this is the cure and you’ve got to go with it, pretty soon, or you’re going to miss the opportunity, one or both parents usually begin to waver."

Survey: Recession taking a toll on patients

The recession is taking a toll on patients and their ability to pay for health care, a new national survey of family doctors has found. The survey’s findings were released this week by the American Academy of Family Physicians. Just over 500 family physicians filled out the online survey, which was conducted in March and April.

The survey results help confirm what many doctors are seeing in their clinics: Since January 2008, the recession has been taking a toll on people’s access to health care.

Nearly three-fourths of the respondents said they were seeing more patients who are uninsured, and more than half said they’ve been seeing fewer patients since the recession began more than a year ago.

Among the most worrisome findings: Sixty percent of the physicians who answered the survey said they were seeing more health problems in patients who had skipped preventive care. And nearly 90 percent reported a significant increase in the number of patients showing major symptoms of stress.

Dr. Ted Epperly, president of the AAFP, said many patients have been deferring or cancelling screenings such as mammograms and colonoscopies.

They also are failing to return for recommended followup visits or refill medications that are vital to managing their chronic conditions. Rather than forgoing needed medication altogether, some patients opt to cut their prescriptions, without their physician’s knowledge, to make them last longer.

In response, many of the doctors who took part in the survey said they were taking specific actions to help make it easier for patients to receive access to care. Two-thirds said they were discounting their fees, providing more charity care, offering free screenings, and/or switching patients to cheaper generic prescription drugs. 

The next chapter for Danny Hauser

A Brown County judge has ruled today in the case of Danny Hauser, the 13-year-old from Sleepy Eye who has been refusing treatment for Hodgkins lymphoma on religious grounds.

The decision: Danny will remain in the custody of his parents, but the family has until Tuesday to find an oncologist and obtain medical treatment for him.

The spectacle of a child being forced to undergo unwanted cancer treatment is abhorrent. But for what it’s worth, I think the judge’s decision is the right one. Thirteen is too young for a child to make his own medical decisions, and parents have a legal, moral and ethical duty to be responsible for their children’s well-being. Although no one can ever predict the outcome, Danny’s cancer is highly treatable and this youngster deserves the best chance medicine can give him.

It’s too bad it came down to this. And the whole story begs another question: Could this entire conflict have been avoided in the first place?

More than anything, the Hausers seem frightened, mistrustful and under a great deal of stress. Possibly they didn’t have much trust in the health care system to begin with. Then their son, one of eight children, became seriously ill and in urgent need of chemotherapy. Danny’s mother, Colleen Hauser, testified last week that she felt overwhelmed and intimidated. There was testimony that Colleen Hauser’s sister died of cancer when Danny was 5 and the impact this had on Danny. Danny’s first treatment didn’t go well, making for a rough start to what is surely an ordeal under even the best of circumstances.

Sometimes the medical team can get so caught up in the immediate situation that the patient’s and family’s emotional needs take a back seat. Was anyone making sure the Hausers understood what was happening? Was there adequate communication? Were there opportunities for the family to ask questions and express their concerns? Was anyone aware that Danny has a learning disability and has difficulty reading and may have been less able than other 13-year-olds to truly understand what was happening to him?

I hope someone on the medical team was able to recognize this was a family who perhaps needed more time and attention so they could trust and feel comfortable with the plan for Danny’s treatment.

When Danny didn’t come back for the second round of chemotherapy he was supposed to have in March, did someone follow up? Was there an effort to reach out?

Finally, before this case made it all the way to the courtroom, was there any attempt to talk to the family and try to settle this in a less adversarial way?

I’d like to think all these things happened but I don’t know if they did. I spoke earlier this week with a reporter who has covered this case closely, and he said these questions were not asked during the hearing.

The adults in this case have all been well-intentioned (with the exception of Nemenhah and its shameless exploitation of this crisis in the Hausers’ lives) but there seem to have been some missteps that perhaps left the family feeling pressured, mistrustful and not fully prepared for the reality of his first, difficult chemotherapy treatment. Misunderstandings can build up on both sides. Families can feel disrespected and under attack; the medical team can feel sabotaged and ignored. Although calling in Family Services may ultimately have been the only way to resolve the situation, it could well have been the deal-breaker for the Hausers.

This story has been cast as a struggle over religious belief. It has been cast as being about a child’s right to self-determination and a family’s right to make critical medical decisions on behalf of their child. But I think it’s about more than this. I think at the heart of it, this is a very human story about a family who is scared and overwhelmed and feeling under siege, and who has chosen a questionable, unproven path because, to them, it seems like the only way to keep the threat manageable. Brow-beating them is not going to work; in fact it has clearly been counterproductive. But neither should Danny be left to the mercy of some dubious therapy because of decisions driven by fear and misinformation.

It should not have come to this. But it did. And even though the story will eventually fade from the headlines, Danny and his family still have to live through the next chapter and the one after that and the one after that.

For better or worse, a tremendous amount of damage has been done. Someone will need to talk this youngster down from the ledge he’s on. This family will need a lot of reassurance and a lot of support to repair the bridges that have been burned.

The Hausers also will have to work harder with the medical team. This is a two-way street. They’ll have to find reasons to trust the team and give them the benefit of the doubt.

Right now, in Danny’s mind and in his family’s mind, they might think they can’t do this. They might think this is all too hard and they’ll never be able to get through it. But they’re not the first family who’s ever dealt with cancer and they won’t be the last.

My hope for this 13-year-old and his family is that they can be connected with another family with a child who has had Hodgkins – someone who can be honest with them, share their feelings, help them know what to expect during the months ahead, and give them the kind of support that can only be found from someone who has walked the same path. It’s something that probably should have happened much sooner. A lot of things probably should have happened much sooner. But it isn’t too late, and the Hausers may yet be glad of the court’s decision today.

Public invited to fill out health survey

What do you think about your clinic? Do you think your primary care doctor does a good job? In what areas do you think your clinic needs improvement?

Minnesotans have a chance to share their opinions about their health care experiences in an online survey that’s being conducted through May 27. You can click here to begin taking the survey.

You have to be 18 or older and a Minnesota resident to qualify. You can answer the questions either for yourself or as a caregiver for someone else.

It takes 15 minutes or less to complete. Most of the questions are multiple choice but some also call for written answers.

The survey is being conducted by the Minnesota Academy of Family Physicians Foundation, the Minnesota Academy of Family Physicians, Minnesota Academy of Pediatrics Foundation, Stratis Health and the Minnesota chapter of the American College of Physicians through a contract with the Minnesota Department of Health.

A summary final report will be posted this summer on the Minnesota Department of Health’s health reform Web site.

If you don’t want to take the survey online, you can have it faxed or mailed to you. To request a copy of the survey, contact the Minnesota Academy of Family Physicians Foundation at 952-224-3873 or survey@mafp.org.

Has doctor shortage been oversimplified?

In rural Minnesota, a growing shortage of doctors is a genuine concern, as the local health care community discussed recently.

But the shortage may be more complicated than a simple there-aren’t-enough-primary-care-doctors,  suggests a commentary in the May 13 edition of the Journal of the American Medical Association.

Dr. Gary Freed and Dr. James Stockman write that "there has not been an appreciable change" in the number of medical students who opt for pediatrics/primary care. In fact, the number of pediatricians in the U.S. has increased since the mid-1970s, even though the number of children has remained stable. Pediatric subspecialists also have grown.

The American Academy of Pediatrics conducted its own analysis in 2005, showing a similar conclusion: There’s no current shortage of pediatricians in the U.S., although they are in short supply in some geographic areas.

This fact has been obscured, however, among studies and reports that have focused on an overall physician shortage, Freed and Stockman said.

They caution that if public bodies and policymakers fail to examine the numbers more closely, the result might be a misdirection of training funds, oversaturation of physicians in areas where the workforce is already adequate, and lack of improvement in areas with imminent shortages.

Said Freed: "Oversimplifying the nuances of the primary care workforce may lead to policies and priorities at odds with needs."

A month of awareness

There isn’t a single month of the year that doesn’t come with some kind of health/disease awareness campaign. Heart disease in February; colon cancer in March; diabetes in November.

The calendar is especially full during May. There are no fewer than 43 promotions, ranging from ALS, allergies and stroke to mental health, osteoporosis and teen pregnancy prevention. For organizations such as the Children’s Tumor Foundation and the Sturge-Weber Foundation, it’s also a chance to call attention to health issues that don’t receive much publicity the rest of the year.

For more resources on any or all of these, take a few minutes during the month of May to check out this compilation of links to information and sponsoring organizations:

- American Stroke Month

- Asthma and Allergy Awareness Month

- Better Hearing and Speech Month

- Better Sleep Month

- Clean Air Month

- Healthy Vision Month

- Hepatitis Awareness Month

- Lupus Awareness Month

- Lyme Disease Awareness Month

- Melanoma/Skin Cancer Detection and Prevention Month

- Mental Health Month

- National Amyotrophic Lateral  Sclerosis Awareness Month

- National Arthritis Awareness Month

- National Bike Month

- National Cancer Research Month

- National Celiac Disease Awareness Month

- National High Blood Pressure Education Month

- National Neurofibromatosis Month

- National Osteoporosis Awareness and Prevention Month

- National Physical Fitness and Sports Month

- National Teen Pregnancy Prevention Month

- National Toxic Encephalopathy and Chemical Injury Awareness Month

- Older Americans Month

- Sturge-Weber Awareness Month

- Tuberous Sclerosis Awareness Month

- Ultraviolet Awareness Month

- North American Occupational Safety and Health Week, May 3-9

- Melanoma Monday, May 4

- National Mental Health Counseling Week, May 6-12

- Cornelia de Lange Syndrome Awareness Day, May 9

- Food Allergy Awareness Week, May 10-16

- National Alcohol- and Other Drug-Related Birth Defects Week, May 10-16

- National Women’s Health Week, May 10-16

- National Stuttering Awareness Week, May 11-17

National Neuropathy Week, May 11-15

- National Women’s Check-up Day, May 11

- Sex Differences in Health Awareness Day, May 12

- Recreational Water Illness Prevention Week, May 18-24

- HIV Vaccine Awareness Day, May 18

- Phelan-McDermid Syndrome Day, May 19

- National Employee Health and Fitness Day, May 20

- Older Americans Mental Health Week, May 24-30

- World No Tobacco Day, May 30

And don’t forget that May is also National Nurses Week (May 612), National Hospital Week (May 10-16), National Emergency Medical Services Week (May 17-23) and National Nursing Home Week (May 10-16).

Winner takes pink; loser gets… nothing?

The Twin Cities will be awash in a pink tide this weekend for the Susan G. Komen Race for the Cure.

It’s going to be a big deal. Thousands of people are expected to participate in the events Saturday and Sunday: a 5K race, 5K and 1K walks, a wheelchair race, children’s events, a health expo and a survivor celebration. In Minnesota, Susan G. Komen for the Cure has raised $25 million over the past 15 years, much of which is spent in Minnesota on breast cancer awareness, education, outreach, screening and research.

It’s all well justified. Breast cancer, after all, is the single most common cancer among women in the United States.

But seeing all the hoopla, the pink ribbons and the commercial sponsors climbing onto the bandwagon, I can’t help but wonder how other women – you know, the ones who have cancer other than breast cancer – feel about it. Do they feel left out? Not as worthy of attention? Lonely? Maybe even a little resentful?

This in no way is meant to diminish what it means to have breast cancer. And it’s a genuine accomplishment for women to have raised so much awareness and support for a disease that in the not-so-distant past was seldom publicly addressed.

It’s worth asking, however, whether the breast cancer community, with its sheer numbers and vocal activism, has unwittingly cast a long pink shadow over everyone else.

If you look at the statistics, women with cancer other than breast cancer are frankly a minority, outnumbered on every front. In 2008, an estimated 182,460 women in the United States were diagnosed with breast cancer, according to the American Cancer Society. Lung cancer came next – 100,330 cases among women last year – and colon cancer was third, with 54,310 new cases among women last year.

Look at some of the other cancers that women get: melanoma, 27,530 new cases in 2007. Kidney cancer, 21,260 new cases. Brain tumors, 10,030. Hodgkin and non-Hodgkin lymphoma, 34,490 new cases combined. Pancreas, 18,910.

At the Willmar Cancer Center, breast cancer accounted for 18.3 percent of all cancers diagnosed and/or treated locally in 2007. In fact it is the most common cancer among women that local health providers deal with or treat in some way.

When these are the numbers, it makes sense for cancer-care programs and community projects to target their resources to reach the most people. And that’s what many of them have done: here, for example, here, here and here. Women and their families and friends don’t have to go too far to find information, services and support to help them weigh their treatment options, live well during treatment and afterwards, and promote awareness in their community.

Sadly, however, this often becomes a zero-sum game. There are only so many resources, after all, to go around. There’s only so much money and compassion and awareness to spread around. Inevitably there are gaps, especially for younger women who are in an age group that’s a minority in the cancer world to begin with.

Local statistics in the annual Willmar Cancer Center report aren’t broken down by gender. But of the 13 people who were diagnosed with melanoma or had their first course of treatment for melanoma there in 2007, it would be interesting to know how many of them were women. Ditto for the other statistics. How many of them lived in Kandiyohi County and how many came from farther away? Was there any way they were able to connect locally with other women going through the same thing they were? Did they feel supported by their community?

This isn’t a plea for pouring more money and resources into new or additional services or fancy awareness campaigns. It’s a plea to revise our perspective into something broader.

Cancer is a burdensome disease, no matter who has it or what kind they have. We owe it to the cancer community to be more inclusive, so we don’t unintentionally make the journey harder for some of them than it needs to be.