By Grace Bender. Everyone needs to be their own healthcare advocate.  I realized this when I noticed my mother struggling to manage the numerous medications she was taking. With so many prescriptions and over-the counter medications to keep track of, I was concerned about her taking the correct dosages at the correct times and following all the various instructions.

So I decided to create a medication chart that allowed her to track her medications more easily and ensure she was taking them correctly. We then showed the chart to each of her physicians and pharmacist.  The result was a dramatic change in my mother’s medication regimen.  The chart enabled her physicians to view what they and all her other doctors were prescribing. They soon realized just how many medications she was on and that some medications were actually counteracting others.  Many prescriptions were changed or stopped and over time she went from taking 16 medications to nine.

Adverse events related to medications are the fourth leading cause of death in U.S. for patients over the age of 65.  This startling statistic led me into the patient-advocate role.  Since that time my own experiences have continued to reinforce my belief that individuals need to take control of their health and work to make sure all their healthcare providers, caregivers, and/or family members are working together as a team.

After being faced with several health scares in 2008, I decided to have an MRI breast scan for peace of mind.  I had learned that the scan was the best diagnostic and screening tool for women with large, dense breasts and a family history of breast cancer.  Since I had a mammogram six months earlier, which was normal, my physician did not think the MRI was necessary.  However, I decided to have one to be certain I was breast-cancer free.  To everyone’s surprise, the scan revealed three spots that biopsies confirmed to be multifocal breast cancer.  Since I knew my own body and had educated myself about available screenings, I may have saved my life because I was told a mammogram might have taken years to pick up the spots. This may not be the right course for every woman, but everyone should know that this tool exists.

I made the decision to undergo a double mastectomy and because it was caught early, I did not need chemotherapy or radiation.  However, I was prescribed Tamoxifen, which is a drug that can help prevent cancer from reoccurring. Like many medications, you must be careful about what other medications you are taking.  I discovered that the anti-depressant I was on counteracted the benefits of Tamoxifen.  Again, I acted as my own advocate.  Remember: Medications can save your life.  However, you must take them correctly and be very careful about what else you are taking, eating, or drinking in combination with your prescription.

Medical errors by physicians and hospitals are still prevalent and a staggering number of patients are misdiagnosed every year.  Compounding the problem is the fact that numerous prescriptions prescribed by various physicians are not being reviewed on a regular basis and patients self-medicate.

Patients should not just depend on a physician’s files of their medical information but take it upon themselves to create their own permanent medical records.  Before going into a medical appointment, everyone should be prepared with the following information:

• List of current medications and dosage
• List of ailments
• Medical history (if seeing a new physician)

A patient should also be prepared to explain to the doctor exactly what their problem is and offer an overall view of their health.  If a serious condition exists, perhaps they should bring someone else to the appointment.  In many cases a friend or loved one can interpret the information the doctor provides more objectively and be ready with questions that someone in an emotional state might have difficulty asking.

Ultimately, it is the responsibility of the individual to be their own advocate, know their own body, ask questions, and make sure everyone that is part of their healthcare “team” is communicating and basing decisions on the current, accurate medical information.

By Robin Strongin. Over the next several weeks Disruptive Women will be blogging about the various aspects of patient advocacy.  Then in September, we will disseminate an e-Book on the topic.  To get ready for this series, I invite your input; think about what patient advocacy means to you and share your stories with us. Please comment on this post to let us know what you think about the topic– its level of importance in health care and any questions you may have or experiences you are comfortable sharing.I hope you will join us in this very important dialogue.

I have always been a bit fascinated by people who make a living telling people what they want to hear.  To be perfectly honest, I actually think it is because I envy them. How nice is that for generating income: making people perky, reassuring them, telling them everything is fine, promising them they are right about everything, helping them keep their denial systems intact?

My envy stems from my irritation with myself for choosing a different path. I have spent most of my life telling people what they need to hear, hence often what they don’t want to hear. I try for balance, noting all the “good stuff”, then offering the counterbalance.  I find one unwelcome message can drown out all the affirmative messages. People home in on that “bad” stuff with an inerrant tenacity.

The differences between these two approaches are instructive.

 Feeling good is quite popular. Creating the conditions for feeling good can lead to fame and fortune. We want to hear from these purveyors of endless good news and reassurance. There is all that amazing research on happiness, the blossoming theories and practices of appreciative inquiry, the neuroscience data on endorphins: you cannot ignore this compelling information.  The reassurance that one is right about everything can make for intense feelings of joy, hope, and optimism. The person who triggers the feelings is brilliant, constructive, right.

In contrast, mentioning the elephants in the room can lead to all manner of irritable behavior, judgments that are hard to absorb. I am too negative, a prig, a moralist, a mean person, a downer. I make people feel bad. Why do I have to bring all that stuff up?

It has taken me several decades to understand that wisdom lies in the middle ground, so I persist. It is in that spirit that I mention an important health care elephant.

• 27 to 30 percent of Medicare payments cover the cost of care for people in the last year of life.
• 40 percent of Medicare dollars cover care for people in the last month.
• 12 percent of Medicare spending covers people who are in the last two months.

We need to have a conversation pretty soon about longevity. Longer life spans are supposed to be the stuff of a success story, not a promise of immortality. We are going to die, eventually.

Exactly how long are we supposed to live, and how much money are we going to spend on dramatic efforts to extend the life of an elderly person for another month or week?  What are we going to do about all these studies that say that the lion’s share of health care costs occur in the last year of life?

How do we as a nation start a constructive discussion about death and how to let go of those we love without insisting that we spend a few large chunks of change on them while we struggle with their inevitable demise? How are we going to help families have this conversation without triggering the “death panel anxiety syndrome”?

Who will lead us in this effort? Theoretically, health care professionals would, however many are ill equipped to do so. They were educated to sustain life at any cost, literally. For many of them, success is not tied to a good death but the ability to not let death happen.  Their job is to save us. It is perhaps unrealistic to expect that they would be good at both warding off death and embracing it.

The antithesis of this worldview is found in the amazing work of the hospice community. They have been around for a while now. As someone who is willing to talk about death, I have had numerous conversations about hospice care, and have yet to hear a single person say this community’s work was anything but splendid. Quite a record, albeit anecdotal!

Maybe we need to make sure that their voice is heard more clearly in the health care “debate” about cost. Maybe we need to make sure experienced hospice workers are at every health care policy table. Maybe they have answers to our questions that would help us all grapple with death and dying a little more constructively.

They might even tell us what we want to hear.  More importantly, they might also tell us what we need to hear.

The Kreeger Museum’s Great Hall. Photo by Robert Lautman, 2004.

By Judy Greenberg. Conversations at The Kreeger Museum: A Program for People Living with Alzheimer’s Disease and their Caregivers

On behalf of The Kreeger Museum, I am thrilled to announce the development of a new art program especially designed for people living with Alzheimer’s Disease (AD), their families and caregivers.  Modeled after the pioneering Meet Me at MoMA (Museum of Modern Art, NYC) program (est. 2006), Conversations at The Kreeger Museum will similarly provide a forum for dialogue and connection through looking at art.  Docents and other arts specialists will conduct small interactive tours and discussions through the museum’s accessible galleries and grounds. During the program, tours will have exclusive access to the museum’s great architecture, sculpture, and paintings on one designated day per month.  The program will be free of charge to not only patients suffering from the disease but also to caregivers and family members who often face significant medical, emotional and economic challenges as a direct result of this devastating disease.  Initially the program will provide art tours only. In future years, it is hoped that Conversations will grow to include art making workshops, outdoor garden walks and intergenerational components.

The Kreeger Museum is uniquely equipped to create a positive and beneficial experience for AD patients and their caregivers.  The museum is a private, non-profit art museum located in what was formerly the private residence of David and Carmen Kreeger.  The Kreegers were passionate about art, music, and architecture and about how these endeavors enrich, enliven, and enhance the human experience.   In the early 1960’s, they asked Philip Johnson to design a home for them that could be easily converted to a museum upon their passing.  After Mr. Kreeger passed away in 1990, we officially opened as a museum in 1994.

The building’s timeless elegance reflects the architect’s passion for and knowledge of history and architectural styles from many great cultures and traditions.  It displays the Kreegers’ permanent collection of 19th and 20th Century paintings and sculpture.  The nearly 200 works in the collection include paintings by Monet, van Gogh, Picasso, Cézanne, Chagall, Rodin, Mirό, Moore, Kandinsky, Léger as well as very fine examples of African and Asian Art.  Through our numerous contemporary programs and exhibitions, work by leading current artists, like William Kentridge, Sam Gilliam, and William Christenberry, is also displayed.

Although we are still in the development phase of Conversations, we have already forged partnerships with leading local institutions and service providers (The National Institute on Aging, the National Coalition on Creative Aging, Sibley Hospital and Grand Oaks Assisted Living, IONA Senior Services, and others) to deliver a distinctly rich and beneficial program.  We hope to be fully operational and offering tours by November 2010.

Please stay tuned here for future announcements and if you would like more specific information about the program please contact, Derya Samadi, Program Manager at Conversations@kreegermuseum.org or 202 337-3050 ext. 18.

The Kreeger Museum is located at 2401 Foxhall Road, NW in Washington, DC.  If you would like to make a reservation for a tour please contact the Reservation Office by email VisitorServices@kreegermuseum.org or by phone (Monday through Friday from 10:00 am to 5:00 pm): 202-338-3552.  For more general information, please check our website at www.kreegermuseum.org.

By Stephanie Mensh. House and Senate Appropriations health subcommittees are in full swing this month. On May 5, the National Institutes of Health Director testified to the Senate subcommittee.

I follow NIH funding because they have a leadership role in understanding and treating cardiovascular and neurological diseases. For example, NIH sponsored the recently-reported landmark CREST study comparing surgery to stenting for patients with carotid artery disease related to stroke, conducted in 117 centers over 9 years.

NIH also sponsored historic research on the clot-buster tPA treatment that reduces morbidity and mortality in acute stroke patients when initiated within three hours of onset.  Stroke is the third leading cause of death and the leading cause of disability in adults. So, I assumed that a lot of privately-supported research was underway.

I was shocked and dismayed to hear Story Landis, Ph.D, Director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS), tell the American Heart Association’s lobby-day lunch attendees that pharmaceutical and biotech companies are abandoning research into acute stroke and neuroprotective drugs that could extend the window for tPA treatment beyond three hours.

This means that NIH will be left to develop new treatments. Unfortunately, only 1% of the federal NIH budget goes to stroke.  President Obama’s proposed 2011 budget for NIH is $32 billion. I’m advocating for the American Heart Association/American Stroke Association’s recommendation that Congress appropriate $35 billion for NIH, so more grants can be made for stroke research.

My husband, Paul Berger, had a stroke 20 years ago at age 36.  Paul wouldn’t have qualified for tPA even if it was available back then because his stroke was the result of a ruptured aneurysm dumping blood in his brain, instead of a clot (80% of strokes are caused by clots).  I am very  encouraged to see NINDS support research into other treatments for the acute phase as well as post-stroke rehabilitation.

May is National Stroke Awareness Month. You can find information on stroke warning signs and risks posted to the NINDS website: http://stroke.nih.gov/ .

Even with emergency medical treatment, many stroke survivors will require rehabilitation and suffer chronic health problems—weakness or paralysis in arms and legs, difficulty with speech/language, and problems with everyday living skills.

Strokes affect people of all ages, including younger people who may lose their jobs due to stroke-related disabilities. The sudden, life-changing nature of a stroke impacts the survivor’s spouse and family as well.

To help make everyday better, my husband and I have written 3 new E-Books on stroke recovery just launched by Positive Power Publishing and  StrokeSurvivor.com:  (1) “Conquering Aphasia & Stroke TODAY!”; (2) “Conquering Aphasia & Stroke for Caregivers”; and (3) “Articles to Take With You.”  Excerpts and details are posted at: http://www.strokesurvivor.com/e-books.html.

Healthcare (insurance) reform has passed in the Senate and final negotiations are happening before it moves on to the President’s desk for signature. While the legislation is not perfect – in fact some would say far from perfect – it is a piece of legislation that is very much in keeping with our American philosophy, our constant pursuit of progress and change.

As the late Senator Kennedy’s career on Capitol Hill demonstrated, change is usually incremental, usually negotiated and usually compromised. But at the end of the day, change usually amounts to progress.

I see tremendous progress, too, as I look back on a decade’s worth of work to promote access to affordable quality health care using nurse practitioners in the role as primary care providers, thereby alleviating the burden on a strained primary care system.

We’ve come a long way regionally and nationally. The fact that we as a country are always striving to improve our path is what most invigorates me as a relatively new American. Our pursuit of progress is never ending, but it is what sets us apart from most countries in the world. We know our work is never done. As we enter a new year and decade, we always should remember that what makes us different from most people and countries in the world is that we have the freedom to purse progress and make change.

This health insurance reform bill is not the end all or be all, but it will help make affordable health insurance available to more than 30 million Americans who have been without it. Furthermore, the legislation contains many provisions for others who fall through the cracks and will need additional care and support.

That’s progress for individuals, families and America, as Walt Disney would have said. And not until you take a ride on the Magic Kingdom’s The Wheel of Progress will you truly appreciate how important it can be to take even a small step in the right direction.

Happy New Year! And a toast to a New Decade and our new Pursuits of Progress for individuals, families, and our country.

As I mentioned in my post last week, Disruptive Women in Health Care is tackling the issue of drug adherence, often referred to as America’s other drug problem.  From a health policy standpoint, the issues cross financial, clinical, behavioral, and cultural boundaries.

Over the next two weeks, Disruptive Women and guest bloggers, all experts in their respective field–each representing a different perspective — patient, physician, nurse, pharmacist, researcher, behaviorist, policy analyst, distributor, to name a few–will share their analyses, opinions, and solutions.

At the completion of this series, we will compile an e-book as we did when we tackled the issue of Comparative Effectiveness Research.

THE SCOPE OF THE PROBLEM

A new report, Thinking Outside the Pillbox: A System-wide Approach to Improving Patient Medication Adherence for Chronic Disease, issued by the New England Healthcare Institute (NEHI) found that patients who do not take their medications as prescribed pay a price in poorer health, more frequent hospitalizations and a higher risk of death.

Collectively, noncompliant patients incur up to $290 billion annually in increased medical costs–that’s $290 billion in avoidable medical spending every year, according to the NEHI report.

This is not a new problem, nor is it unique to the US.  In 2003, the World Health Organization (WHO) issued a landmark report entitled Adherence to Long-Term Therapies in which it noted:

Adherence to therapies is a primary determinant of treatment success. Poor adherence attenuates optimum clinical benefits and therefore reduces the overall effectiveness of health systems.

“Medicines will not work if you do not take them.”  Medicines will not be effective if patients do not follow prescribed treatment, yet in developed countries only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. In developing countries, when taken together with poor access to health care, lack of appropriate diagnosis and limited access to medicines, poor adherence is threatening to render futile any effort to tackle chronic conditions, such as diabetes, depression and HIV/AIDS.
This report is based on an exhaustive review of the published literature on the definitions, measurements, epidemiology, economics and interventions applied to nine chronic conditions and their risk factors. These are asthma, cancer (palliative care), depression, diabetes, epilepsy, HIV/AIDS, hypertension, tobacco smoking and tuberculosis.

In the intervening years since the WHO issued its report, adherence has become more problematic.  Numerous reports highlight the ongoing challenges, which are especially critical in the mental health arena.

A study in the American Journal of Psychiatry found that close to 60% of schizophrenics who were prescribed anti-psychotic drugs did not take the medication as prescribed by their physicians.  “We looked at adherence to anti-psychotic medication because they form the backbone of treatment for schizophrenics,” said Dr. Dilip Jesete, co-author of the study.  “These medications are good, but only work when taken properly.”

The study found that psychiatric hospitalizations were higher for people who did not take their medication as prescribed.

When schizophrenics, a disease which affects over 2 million Americans, do not take their medication, they are at risk for dying by suicide.  Four out of ten people who suffer from schizophrenia attempt suicide and one in ten die by suicide.

SOLUTIONS

Despite the complexity of adherence related challenges, a number of promising solutions, innovative responses and well-researched efforts are underway.  Many of these will be described in greater detail in our Drug Adherence series.

Some of these include:

• Text message alerts to remind patients
• Greater use of health care teams
• Integration of health information technology
• Creation of online and offline medication management systems, reminders
• Health e-games
• Insurance reforms
• Public awareness campaigns
• Patient education
• Mobile phone applications
• Research in gender-based barriers

We look forward to your comments and input as we shed light on this critical policy issue.

It has been estimated that 3 out of 4 people report that they do not take their medications as directed, resulting in hundreds of billions of dollars annually in related medical costs and an enormous number of hospital admissions and readmissions.

The reasons for this are complex and varied.  This is a particularly vexing challenge for young, chronically ill patients, for people with mental health diagnoses and for the elderly who may suffer from memory impairment.  Anyone on a complicated drug regimen knows how committed one must be to remain adherent.

For some, cost is an issue while for others side effects can be unpleasant, travelling can compromise the best of intentions as can the need for refrigeration when none is available.  Some patients must take some drugs on an empty stomach and others on a full stomach.  Some patients are simply not ready to accept they have a serious, or lifelong illness. It is complicated.

Because the implications, both clinical as well as financial, are significant, we have invited a number of our Disruptive Women bloggers, as well as some other experts in the field, to join us in a series of policy posts on this critically important issue.

Beginning next week, on October 19th, we will launch our Drug Adherence series which will analyze this challenge from a number of perspectives:  patients, providers, researchers.  In addition, we will also offer innovative solutions.

At the completion of this series, we will compile all the posts into an e-book, just as we did when we tackled the issue of Comparative Effectiveness Research and created our Comparative Effectiveness Research e-book.

If  you or someone you help care for has experiences you would like to share, or you have research, solutions and other thoughts on this topic, I hope you will share them with us.

Several months ago I was attending a funeral.  After being introduced to a relative’s relative, my family member asked me if I knew what had happened to Mr. Smith, pointing to the elderly man walking with a cane.  It was a miracle my family member said.  A miracle I wondered, looking skeptically at him.  Yes, Mr. Smith was having a CAT scan and the results showed that he had pancreatic cancer.  A miracle I asked, why so.   As it turned out the patient, who in his early 80′s went to his doctor complaining of not feeling well.  Abdominal pain. Distention.  General malaise and discomfort.  One thing led to another and CAT scans were ordered.   And as the family story goes, “by mistake” a CAT scan of his pancreas was performed.    And as I understand the story, the tumor was removed.  No metastasis was found.  The gentleman was advised to be sure to come in for his scheduled checkups and to tell his doctor about any subsequent health problems, and to be prepared for follow-up tests.   He was told that some tests will be repeated in order to see how well the treatment is working.  The recent death of actor Patrick Swayze reminds us that pancreatic cancer is so difficult to detect and diagnose early. There aren’t any noticeable signs or symptoms in the early stages of pancreatic cancer.  The signs of pancreatic cancer, are often like the signs of many other illnesses.[1]   Hmmm, I agreed, a miracle by accident.

We won’t ever be sure what could have been if we had paid more attention to the signs and symptoms. Mom had died in October 2006. Dad had visited her in the hospital and the rehab center and the nursing home for seven months, every day, day after day after day. They had been together for 50+ years. And he had been sure to tell the story of their meeting and their marriage and their lives together to anyone……. well actually to everyone that he met. After mom passed, he slowly managed to go on with his life without her. It was not easy. He had to learn how to use the microwave, how to make coffee, and how to cook. He mastered the art of grocery shopping and doing his own laundry. One day at a time we encouraged him. Slowly he managed to pick up the pieces and take care of himself. Or so we thought. Sure he often spoke of missing her. And he mentioned having trouble sleeping and not really feeling like eating. He told us that he often would get up in the middle of the night and then take naps during the day. He mentioned being invited to join friends for lunch or dinner but not feeling well enough to do so. He seemed more and more tired and uninterested in life. Dad we asked, did you go for a walk today? No, no, no he said, it’s too hot. Dad we said, perhaps you should see the doctor. No, no, no, I have an appointment next month. Dad we said, perhaps you could talk to the Rabbi. No, no, no, I don’t want to bother him. Dad, we said, your friends want to see you. No, no, no I am not good company. Dad, we said, please come visit ….. the grandkids want to see you. No, no, no…it’s just not that easy to travel at my age, he would say. Dad we said, why don’t we all take a vacation together? No, no, no he said, it’s just not easy to get around. Dad we said, why don’t you see a counselor or join a grievance support group? No, no, no, he said, I am just not ready. Dad, we agreed is really, really depressed about mom’s passing… his grief seems insurmountable. He’s really having a hard time being by himself. But even so maybe we should call his doctor…maybe it’s more than depression or grief. It looks like he’s losing weight and he’s always tired and seems to be sleeping more and more. The pain of his loss never seemed to subside. His grief seemed to appear mostly in physical ways: restlessness, exhaustion, sleeping problems, appetite changes, body aches, stiffness of joints, weight loss, and increased fatigue. But two years later he was still suffering much as he had back in 2006. Maybe it was time for us to insist that we go with him to his doctors.

Hmmm said the doctor…..weight loss, tiredness, loss of appetite, decreased energy, and depression. Let’s run some tests. Hmmm said the doctor lets get a scan. Hmmmm said the doctor I think we need an MRI. Hmmm said the doctor, I want to get a liver biopsy. Hmmm, said the doctor I am sorry but its pancreatic cancer and its spread to the liver and given your dad’s age and condition, I don’t think there is much we can do. Dad died in November 2008, two months after his diagnosis.

As the nation focuses on how to cut the cost of so-called health care reform, maybe it’s time to pay attention to demonstrated methods for improving care while reducing costs that are not yet supported by Medicare and other payers. We cannot afford the system we have and changing it should be on the top of the agenda for anyone who wants to extend coverage of health care to all and improve health outcomes.

For example, many readers of this blog will have had the experience of being a patient or family caregiver for someone who is older and has multiple chronic health problems that periodic become acute and require hospitalization. Once discharged from the hospital, the patient and caregiver often feel at a loss for how to manage some of the problems that can arise even within hours of discharge. A study published in the New England Journal of Medicine in April of this year reported that one in five Medicare patients who are discharged from a hospital will be readmitted within 30 days. That number keeps increasing with time, so that by the end of one year, about half of these patients will have been readmitted. This is costing the nation an estimated $17 billion.

Mary Naylor is a nurse researcher at the University of Pennsylvania who has spent more than 20 years developing and studying what she calls a Transitional Care Model (PDF). Under this model of care, an advanced practice registered nurse (APRN) goes into the hospital when high risk (for readmission) patients are admitted. The APRN assesses the patient and family caregiver, clarifies the plan of care and coordinates the input of sometimes multiple health care providers, prepares the patient and family caregiver for discharge, then makes a home visit within the first 24 hours after discharge and continues to work with the patient and family caregiver for up to 90 days post-discharge. Naylor says this is more than “care coordination.” She sees it as an opportunity to help patients and families rethink how they approach and manage their care. The APRN will even go with the patient and family caregiver on a follow up visit to the physician’s office to model how to make the best use of this time.

Naylor isn’t the only one doing this work. Eric Coleman of the University of Colorado at Denver Medical Center and Chad Boult of the John Hopkins University Health Institute have developed variations on the Naylor model. All show that hospital readmission rates decrease, money is saved and health outcomes improve in some way.

Now AARP has worked with Congress to develop a Medicare Transitional Care Act (H.R. 2773/S. 1295) that has been introduced into both houses of Congress. The Act calls for Medicare to pay for a transitional care benefit, first for high-risk patients and then, if the outcomes of this first phase are satisfactory, for low- and moderate-risk patients. It’s long overdue. I now believe it to be unethical for hospitals to discharge patients knowing that they don’t have the knowledge and resources to help them through this difficult transition to home. To read about the details of the bill, go to http://www.govtrack.us/congress/billtext.xpd?bill=s111-1295. The bill needs advocates who will urge Senators and Representatives to sign on as co-sponsors or, at the very least, support this important legislation.

My husband Paul Berger suffered a stroke resulting from a ruptured aneurysm when he was 36—that was 20 years ago. Some things have improved, like treatment—the CT scan then could tell there was bleeding in his brain, but couldn’t locate the site of the burst vessel. A week later, after a follow-up test, he had brain surgery to implant a platinum metal clip. The night before the surgery, he had a re-bleeding, which probably caused the severe stroke, devastating his speech-language functions, and paralyzing the right side of his body. If this had happened today, the improved diagnostics probably would have located the problem immediately, and he might have had a coil or stent threaded through the blood vessel to the aneurysm, instead of opening his skull. He might have had a shorter recovery and little residual disability and I might not be writing this blog as a caregiver.

Some things have not improved—like health insurance coverage. As the years have gone by, coverage for hospital stays and rehabilitation have been shrinking. For example, Medicare has a cap on outpatient rehabilitation that makes no sense—it’s not capped if performed in the more costly hospital outpatient department, but limited to about $1,800 for physical and speech therapy combined, and $1,800 for occupational therapy provided in an office. At current rates, that’s about 45 hours of total therapy, not nearly enough for stroke recovery (to be fair, there is an exceptions process, but it is scheduled to expire at the end of this calendar year).

This leads to a more difficult issue in the health reform debate—what exactly should be covered by health insurance? Acute care, annual preventive visits, post-acute, healthy living coaching? Commercial health insurance has many ways to limit its exposure to the costs of long term chronic conditions, like surviving stroke, including caps on therapy. Another way is challenging access through “pre-existing conditions” ineligibility and/or very high premiums. As a result, the physicians and therapists seem to prescribe and set treatment goals that match the insurance plan, often short of the patient’s needs, especially for rehabilitation following stroke. They look to the survivor’s family, particularly the spouse/caregivers, like me, to pick up the torch and carry on.

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Caregivers need all the help we can get in navigating the confusing and often conflicting health, medical, and financial decisions required to support a family member with severe or chronic health conditions. My husband, Paul Berger, suffered a severe stroke from a ruptured aneurysm at the young age of 36. Our insurance covered his acute medical needs—brain surgery, hospital care, and even some rehabilitation services. Reimbursement ended when he was discharged from the rehab unit of the hospital, but he still needed—and could benefit from—long term speech, occupational and physical therapy.

The first decision was how to continue care. Should we try to coordinate outpatient care through the hospital, or through independent practitioners? Should we sacrifice our savings by spending a lot of money to extend his inpatient time at the hospital or transfer to another less costly one nearby? Should we sacrifice our time together and support of local family and friends to send him out of town to the state’s only comprehensive rehab facility run by the department of vocational rehabilitation services a few hours away?

In my professional life, and intellectually, I strongly supported community-based care. My gut told me that Paul needed to stay connected in town, and find a way to make it work from home. My heart didn’t want us to be separated. I became Paul’s “case coordinator” and orchestrated his weekly therapy schedule, periodic doctor’s visits, paperwork, prescriptions, equipment, home modifications, a daytime driver/companion/homework helper (since I continued to work full time), vocational rehab assessments, contact with his employer, and many of the chores Paul had handled—taking care of our finances, among others.

This was twenty years ago. At the time, AHRQ’s predecessor agency had the ambitious goal of writing clinical practice guidelines for major conditions affecting Medicare’s budget. Cataract surgery and treatment of benign prostate enlargement were at the top of the list. Post-stroke rehabilitation made it into the mix, and Paul and I testified during a public hearing. We also coordinated testimony by speech and physical therapists to talk about the need to clinically recognize that stroke survivors – like Paul – could continue to make progress many months, indeed years, after their stroke.

These guidelines are in the archives at AHRQ. A few years ago, the Department of Veterans Affairs developed a set of post-stroke rehabilitation guidelines. I have seldom, if ever seen these guidelines provided to survivors and their families.

I believe that for comparative effectiveness research (CER) to be successful, meaningful public outreach is needed to get the information into the hands of the patients and their families. CER needs to provide advice for real life decisions in real time. Studies must be designed with the patient in mind. Myrl Weinberg, President of the National Health Council, said it best:

“Comparative effectiveness research should supply us with good evidence and data about what works and what doesn’t. However, it should not be just about one product against another, or treatment process, or combination thereof. We also need to look at how different delivery systems can be compared.” www.nationalhealthcouncil.org

According to local news, PETA sent a letter to Penn Health System CEO Ralph Muller urging him to follow the lead of hospitals in England, reducing their carbon footprint and improving patient health by eliminating the availability of meat for patients, visitors and employees.

HUP is one of my local hospitals; a place where friends have been treated for cancers, and last month, for heart failure. It’s got a big footprint in this town and I’m glad it was there for my friends.

If my hospital got a letter, maybe yours did, too.

A hospital spokesperson says they’ve not received the letter, but if CEO Muller wants my reaction – here goes.

Please don’t. I have five reasons:

Reason #1: Personal experience. I’ve been a vegetarian for nearly 40 years. It was not an easy transition to make and not an easy lifestyle to live even though I was already – and still am – healthy, highly motivated and made the choice voluntarily.

• The physical impact of the transition took a year and was rough sledding. I can’t imagine asking a person as ill as those recently hospitalized to take that on.
• The skill challenge is substantial, entails difficult re-learning and supports for doing so today are only slightly better than decades ago. In 40 years of care by a number of different physicians – including some who were vegetarians themselves – it was only recently that one took the negative health consequences serious, explored – and found – an important deficiency in my diet, for example. Vegetarian cook books have beautiful covers and great recipes, but few covers show – and few recipes guide – adequate alternative protein sources for a lifetime.
• The genetic challenge cannot be ignored. Genetics play a role in nutritional needs and some people – the Dali Lama, for example – will never be able to successfully make the transition.
• The practical challenges are many. For anyone who travels, does not or cannot cook or readily control food choices, it’s hell. Airline, banquet and restaurant meal planners are not savvy about how to provide non-meat alternatives and I was eventually forced to return to fish for protein. Men I know who do physical labor say that despite their best efforts, vegetarian diets have not satisfied the physical demands that labor requires.
• Finally, it can complicate life with other chronic conditions. For me, it came five years ago as my Irish genetic ancestral predisposition to celiac showed up – as it can later in life. All that good whole grains if wheat, barley and rye I was eating were, in fact, killing me. I easily adjusted to this new condition for at-home meals, but it complicates an already challenging dietary life style in travel and social situations.

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Women and girls turn to domestic work as one of the few options available to them in order to provide for themselves and their families. Instead of guaranteeing their ability to work with dignity and free of violence, governments have systematically denied them key labor protections extended to other workers. Domestic workers, often making extraordinary sacrifices to support their families, are among the most exploited and abused workers in the world.

In New York State, there are 200,000 nannies, housekeepers and eldercare workers. They provide primary care including healthcare to many people. Virtually all of them are immigrants, the vast majority of them undocumented, and mostly women of color – which makes it all too easy for employers to exploit them, wittingly or not. Workers usually achieve rights through strength in numbers, but when you work in 200,000 places it’s hard to organize. They have never been protected by state labor laws. Things are getting worse. Labor advocacy groups are hearing from household workers that abuses are increasing as their employers face strain in their own lives. Increased violence, lay-offs, unjust firings or wage cuts and workers given additional responsibilities for the same pay.

Abuses against domestic workers, in private homes and hidden from the public eye, includes physical, psychological, and sexual abuse. In the worst situations, women and girls are trapped in situations of forced labor or have been trafficked into forced domestic work in conditions akin to slavery.

In New York State, both the Assembly and Senate Labor Committees have passed the Domestic Workers Bill of Rights out of committee. It’s up to the New York State legislature now to pass the Domestic Workers Bill of Rights (A1470/S2311).

The New York Domestic Workers Bill of Rights is the first legislation of its kind nationally and will set a precedent for labor standards for domestic workers around the country. Contact Domestic Workers United at http://www.domesticworkersunited.org and help make this happen in NYS so other states can follow in legislating laws to protect the millions of domestic workers nationally.