Hurricane Sandy: Effects on Healthcare Seekers and Providers Alike

Health Care Professional Ratings Tied to Efficiency

The degree of effort put into selecting health care professionals varies among consumers.  For instance, many relatively young users of health care may only go through the motions of selecting a primary care physician, whom they may seldom visit, and never investigate specialists that provide more particularized care.  A recurring question, however, amongst more frequent health care consumers is “who provides the best care?”  As consumers become older, mature, develop ailments more frequently, and raise families, this question becomes asked more and more frequently.  Where is such a consumer to look for reliable information?  Yes, rating systems of health care professionals are available.  But the objectivity of such systems is often questioned because of the agenda of those developing the rating systems.  For instance, Andrew Cuomo, the former New York Attorney General, injected New York State into the practices through which an insurance company rated the health care providers in its network.  The concern identified by the Attorney General’s office was that insurance companies would rate health care providers based upon their ability to provide care cheaply, rather than on their ability to provide quality care.  This concern stemmed from the undeniable profit self-interest of the insurance company. However, was such a stance by the now Governor necessary or appropriate?  I think not.

Determining the quality of care delivered by a health care provider is an inherently subjective task.  The outcomes of individual patients will depend upon a multitude of factors, many of which are out of the control of the provider.  Different patients will react differently to different treatments because of their unique physiology.  The same ailment will have indiscernibly progressed to varying degrees in different patients.  A doctor could follow all the proper protocols, provide the care called for (i.e., satisfy the standard of care), yet a poor outcome could nonetheless result. The outcome in these instances is largely the result of the “luck of the draw” with respect to a patient pool.  Thus, trying to determine which doctors provide the best care is inevitably a limited, if not fruitless, endeavor.

Additionally, a mechanism is already in place to ensure that substandard doctors are not practicing.  The training to become a doctor and the required certifications to practice serves as the screening mechanism to ensure that health care providers have the requisite skill to perform their trade.  So long as doctors are meeting this minimum established by their field, patients should be led to believe in the ability of those doctors to provide adequate care.  Ranking doctors based on outcomes naturally leads consumers to believe that entry level standards are watered down such that doctors “at the bottom” are not competent to perform; which is simply not the case.

Finally, ranking doctors based upon efficiency or cost factors serves a valid societal purpose.  Firstly, putting utility aside, such metrics are readily quantifiable, accurate, and objective.  And with respect to utility, many patients want efficiency.  An efficient doctor is, it would seem, much less likely to engage in “defensive medicine.”  For a time pressed patient, as many of us are, reassurance that our time will not be wasted with unnecessary tests and precautions holds real value.  And on a societal level, it is obvious that health care costs are out of control.  I have recently been put in a position where I must acquire a policy for my family on the open market (I am leaving a secure government position with subsidized health benefits for a position as a law clerk with a small law firm, which does not extend health benefits to its clerks). My monthly contribution is currently $330 for a health plan with no deductible and $20 co-pays.  It appears as though my best option on the open market is a $1200/month plan, with a $1,000 deductible.  My family is young and healthy. Our annual doctor visits consist of well visits, totaling approximately $1,000 in total costs. With this in mind, if insurance companies can encourage the use of efficient providers (who have been vetted by their profession as proficient at what they do), then this practice should be encouraged.  A “high efficiency” network at a reasonable cost would certainly perform well on the open market, particularly among us consumers that don’t actually anticipate using their policies.  Health care is or will be a significant factor in everyone’s life at some point.   However, if we can prevent it from becoming the driving financial concern among the middle class, that would appear to be a worthy cause.

Adam Peterson is a third-year evening student at Seton Hall University School of Law. He received his B.S. in Conservation Biology from the State University of New York College at Cortland in 2007. Since that time he has worked for the New York State Department of Environmental Conservation as an Environmental Analyst, reviewing development projects for compliance with New York State environmental regulations.

Image by Ludraman.

Project Shows Substantial Decrease in Colorectal Surgery Infections

There was a time in medical science when doctors did not wash their hands prior to operating on their patients (some might say, that to a greater extent than seems possible, this is still the case among medical professionals and point to a number of recent studies as uncomfortable proof). This failure of doctors to wash hands in the medical forum led to the otherwise avoidable death of many of their patients. Up until the mid 1800s, medical science had simply not made the connection between bacteria, transference, infection and death.

Ignaz Semmelweis, a Hungarian physician who was Director of the maternity clinic at the Vienna General Hospital in Austria, made the connection after what is said to have been an extensive statistical analysis in the 1840s, and demonstrated that hand-washing could drastically reduce the number of women dying during childbirth. He introduced a rigorous hand scrubbing protocol and enough women stopped dying to earn him the honorific, “savior of our mothers.”

But as an article from the UK’s Science Museum, Exploring the History of Medicine, points out

Until the late 1800s surgeons did not scrub up before surgery or even wash their hands between patients, causing infections to be transferred from one patient to another. Doctors and medical students routinely moved from dissecting corpses to examining new mothers without first washing their hands, causing death by puerperal or ‘childbed’ fever as a consequence. As dissection became more important to medical practice in the 1800s, this only increased.

Semmelweis showing again that the common sense of one era is the uncommon brilliance of one bygone.

Which brings us to this latest study/project showing new solutions which decrease the risk of colorectal surgical site infection. According to the Associated Press in an article about the project,

“Almost 2 million health care-related infections occur each year nationwide; more than 90,000 of these are fatal.”

And:

“Infections linked with colorectal surgery are particularly common because intestinal tract bacteria are so abundant.”

 

According to the press release regarding the Project,

A project to reduce colorectal surgical site infections (SSIs) saved more than $3.7 million in costs for 135 avoided SSIs. The two-and-a-half year project included seven hospitals and was directed by the Joint Commission Center for Transforming Healthcare in collaboration with the American College of Surgeons.

The participating hospitals were able to reduce superficial incisional SSIs, which affect skin and underlying tissue, by 45 percent and all types of colorectal SSIs by 32 percent. The average length of stay for hospital patients with any type of colorectal SSI decreased from an average of 15 days to 13 days. In comparison, patients with no SSIs had an average length of stay of eight days.

The press release further notes that

Colorectal surgery was identified as the focus of the project because SSIs are disproportionately higher among patients following colorectal surgeries. Colorectal surgery is a common procedure across different types of hospitals, can have significant complications, presents significant opportunities for improvement, and has high variability in performance across hospitals. The project addressed preadmission, preoperative, intraoperative, postoperative and post discharge follow-up processes for all surgical patients undergoing emergency and elective colorectal surgery, with the exception of trauma and transplant patients and patients under the age of 18. Project participants studied the potential factors that contribute to all three types of colorectal SSIs – superficial incisional, deep incisional and organ space SSIs, which affect organs and the space surrounding them.

 

The AP article:

Solutions included having patients shower with special germ-fighting soap before surgery, and having surgery teams change gowns, gloves and instruments during operations to prevent spreading germs picked up during the procedures.

Some hospitals used special wound-protecting devices on surgery openings to keep intestine germs from reaching the skin.

The average rate of infections linked with colorectal operations at the seven hospitals dropped from about 16% of patients during a 10-month phase when hospitals started adopting changes to almost 11% once all the changes had been made.

The AP article further notes the timely nature of the Project’s benefits:

Besides wanting to keep patients healthy, hospitals have a monetary incentive to prevent these infections. Medicare cuts payments to hospitals that have lots of certain health care-related infections, and those cuts are expected to increase under the new health care law.

Drug and Alcohol Addiction, Costs and Lack of Care

Interesting article in the Washington Post/ Kaiser Health News I stumbled across in our sidebar; it discusses both the cost of addiction, with emphasis given to drugs and alcohol, and the absolute dearth of doctors trained in addiction medicine.

The article states that

“Of the 985,375 practicing physicians in the United States, only about 1,200 are trained in addiction medicine….”

And notes that

A recent comprehensive report by the National Center on Addiction and Substance Abuse (CASA) at Columbia University found that most doctors fail to identify or diagnose substance abuse ‘or know what to do with patients who present with treatable symptoms.’

Which is problematic, given that the report is said to have found that “Only about 10 percent of the 22 million Americans with a drug or alcohol problem receive treatment,” “addiction [including nicotine] is linked to more than 70 diseases or conditions and accounts for a third of inpatient hospital costs. The press release from the report, “Closing the Gap between Science and Practice,” also notes that “Costs to federal, state and local governments amount to 11 percent of total spending; 95 cents of every dollar pay for the consequences and only 2 cents go to prevention and treatment.”

And rather ominously, the WaPo/Kaiser Health News article reports that “The federal Substance Abuse and Mental Health Services Administration estimates that up to a third of the 30 million Americans who may gain health insurance under the Affordable Care Act have a substance abuse or mental health problem.”

There’s some math to be done here regarding costs, and I won’t suggest that I know what percentage the total spending should be for prevention- but I’ll guess that 2% for prevention and treatment is not ideal. And the thought that “most doctors fail to identify or diagnose substance abuse ‘or know what to do with patients who present with treatable symptoms,’” is less than comforting.

But, as someone with a rather large personal stake in all this- in recovery for nearly two decades- what is somewhat comforting is that if, as the report suggests, there is a gap between the science and practice (actually, the more you look, “chasm” seems more fitting a description), a closer look at the science shows some remarkable advances in medical science’s understanding of addiction-especially as it regards the  neurobiological processes, focus on the brain’s “reward circuitry,”  neuroadaptations maintained by former drug users long after drug use has stopped, with particular attention on the mesolimbic dopamine system, and, more generally, addiction as a disease of bio-psycho-social etiology.

Armed with this knowledge and the prospect of the newly insured and afflicted making their way to emergency rooms and court houses all across America, perhaps this next decade can be about implementation- always difficult, but surely the fruit of hard won knowledge. And if you have any doubts about the actual costs of drug and alcohol addiction- tallied in lives and families ruined- or to get a sense of just how important implementation is-I would highly recommend you find your way to an Al-Anon or Nar-Anon meeting, and just listen.

Childhood Cancer: Pushing and Pulling Against a Powerful Foe

Since September is National Childhood Cancer Awareness Month –a calendar of events can be found here– a review of relevant recent and pending federal legislation seemed appropriate.  The Food and Drug Administration Safety and Innovation Act (FDASIA), which the President signed into law on July 9, 2012, included a number of provisions that it is hoped will speed development of drugs to treat childhood cancers and other rare diseases.  As Peter L. Saltonstall, who heads up the National Organization for Rare Disorders (NORD), explains here, the central purpose of the FDASIA was to reauthorize the Prescription Drug User Fee Act, but several separately-introduced bills “of particular importance to rare disease patients and supported by NORD” were incorporated into it.  These included the Creating Hope Act, which was powerfully advocated for by Kids v Cancer and the bi-partisan Congressional Childhood Cancer Caucus.

The Creating Hope Act expands the FDA’s priority review voucher (PRV) program– which was passed to incentivize the development of treatments for neglected tropical diseases, malaria, and tuberculosis– to cover rare pediatric diseases, including childhood cancers.  Under the program, “[t]he [FDA] shall award a priority review voucher to the sponsor of a rare pediatric disease product application upon approval by the [FDA] of such rare pediatric disease application.”  The fully-transferable voucher can be redeemed for review of–and action on–another new drug application within just six months.  In an influential 2006 article in Health Affairs, David Ridley and colleagues estimated that if a “voucher speeds FDA approval by a year, it could increase the present value of sales of a blockbuster drug by more than $300 million.”

While a voucher worth as much as $300 million would seem to add up to an attractive “pull” mechanism, the PRV program for neglected tropical diseases has, unfortunately, not lived up to expectations.  Only one company, Novartis, has received a PRV, for an anti-malaria drug which was already approved and marketed outside the United States.  Writing at The Incidental Economist earlier this year, Kevin Outterson characterized the PRV program as “unsuccessful” and its extension to rare pediatric diseases as “disappointing.”  More promising, Professor Outterson suggests, are “push” mechanisms like the Innovative Medicines Initiative (IMI) in Europe, described here, which will, among other things, funnel $738 million to antibiotics researchers between now and 2020, with the initial goals of “building and training networks of researchers, facilitating and increasing the exchange of research data, and improving the efficiency of clinical trials on new antibiotics through better laboratory tests and better trial design” and the long-term goal of “speed[ing] up the development of much-needed antimicrobial drugs.”  Notably, the IMI was established with $1.23 billion of European Union funds and an impressive $1.23 billion of “mainly in kind contributions (consisting mostly of research activities)” from the European Federation of Pharmaceutical Industries.

The National Pediatric Research Network Act of 2012, which is currently pending in the House and Senate, bears some similarities to the IMI’s antimicrobial drug development effort.  The Act would appropriate government funds to support the establishment and operation of a network of pediatric research consortia that would conduct “basic, clinical, behavioral, or translational research to meet unmet needs for pediatric research” and “train[] researchers in pediatric research techniques.”  The Act provides that “an appropriate number of such awards” must be awarded to consortia that, among other things, agree to “conduct or coordinate one or more multisite clinical trials of therapies for, or approaches to, the prevention, diagnosis, or treatment of one or more pediatric rare diseases or conditions[.]”

Childhood cancers are not specifically mentioned in the text of the National Pediatric Research Network Act, however, and, should it pass, the Network it establishes is likely to focus on other rare pediatric diseases.  An existing network, the Children’s Oncology Group (COG), which is principally supported by the National Cancer Institute, “unites more than 8,000 experts in childhood cancer at more than 200 leading children’s hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe in the fight against childhood cancer.”  COG “has nearly 100 active clinical trials open at any given time … include[ing] front-line treatment for many types of childhood cancers, studies aimed at determining the underlying biology of these diseases, and trials involving new and emerging treatments, supportive care, and survivorship.”  The existence and success of COG — it’s “research has turned children’s cancer from a virtually incurable disease 50 years ago to one with a combined 5-year survival rate of 80% today,” although it has suffered from budget cuts in recent years–likely explains why advocates have turned their attention to pull mechanisms like the Creating Hope Act that build on existing incentives aimed at increasing industry investment in drug research.

Another model for increasing industry involvement is to require it.  This could perhaps be described as a strong pull mechanism.  The Pediatric Research Equity Act (PREA) takes this approach, requiring, with some exceptions, that a sponsor of a new drug application study that drug in children.  FDASIA, as the FDA summarizes here, makes PREA “permanent — no longer subject to reauthorization every five years[,] … requires earlier pediatric study plan submission by drug manufacturers subject to PREA and gives FDA new authority to help ensure PREA requirements are addressed in a more timely fashion.”  PREA, though, has not worked to generate research into pediatric cancer treatments, and the FDASIA reforms will not change that.  In remarks delivered at the 2^nd Annual Childhood Cancer Summit in September 2011, Dr. Peter Adamson, the Chair of the Children’s Oncology Group, explained that an exception to PREA’s requirements “can be granted for most new cancer drugs, as the common cancers observed in adults essentially do not occur in children.”

Of course, industry involvement could increase though profit-driven activity without additional pushes or pulls from government.  Childhood cancers have not, thus far, been an industry focus.  In the past twenty years, the FDA has approved just two drugs, clofarabine and erwinaze, to treat pediatric-specific cancers.  It was not until this past August that the agency approved the first “pediatric-specific dosage form” of a cancer-fighting drug, everolimus.  A story reported in Fortune’s September 3, 2012 issue entitled Rare Diseases Mean Big Profits (an online version is available here), suggests that there may be hope that the pace of development will accelerate.  According to Fortune:

Wall Street skews bullish on Alexion[, a specialty pharmaceutical company that developed and sells the drug Soliris which is used to treat two rare disorders,] and its peers in the ultra-rare-disease market.  With Pfizer and other big pharma companies facing devastating revenue drops as blockbuster drugs like Lipitor go off patent, niche players like Alexion look good because of their monopoly pricing power.

Soliris, Fortune reports, costs “around $400,000 per patient per year.”  There may be, then, cause for hope that in the coming years the private sector will increase its investment in the surpassingly important search for treatments for childhood cancers and other rare pediatric diseases.  I welcome your thoughts.

Originally Denied by the EPA, the Federal Government Now Acknowledges the Link between Ground Zero Air and Cancer

Two weeks ago, New York City held the 11^th annual name-reading ceremony for the victims who died in the collapse of the towers on September 11, 2001. Missing from the ceremony, however, were the names of victims who died years after the attacks.  Since 9/11, a multitude of ground zero workers, first responders, and inhabitants of Lower Manhattan have been diagnosed with a variety of diseases, including cancer and mesothelioma, believed due, and now presumed to be due, to exposure to toxic dust. Some have died from their illness, some survived, and some are yet to be diagnosed.

On 9/11, people from all over the nation rushed to New York City to help with search and rescue.  After the search and rescue mission ended, workers were hired to clean up and dispose of the rubble. Since the twin towers were constructed during the 1970s, there was an obvious concern that asbestos used to insulate the buildings, not banned at the time of construction, would pose major health and air quality concerns.

Former New Jersey Governor Christine Todd Whitman and then administrative head of the EPA assured the public that there was no need for alarm.  After reviewing scientific data, Whitman issued a statement on September 18, 2001 declaring the area safe for workers and nearby inhabitants. In a press release, EPA Administrator Whitman stated,

“‘We are very encouraged that the results from our monitoring of air-quality and drinking-water conditions in both New York and near the Pentagon show that the public in these areas is not being exposed to excessive levels of asbestos or other harmful substances,’ [...] ‘Given the scope of the tragedy from last week, I am glad to reassure the people of New York . . . that their air is safe to breathe and the water is safe to drink.’”

The credibility of this data was later called into question. In 2006, senior EPA scientist Dr. Cate Jenkins addressed a letter to members of the New York Congressional delegation stating,

“[T]est reports in 2002 and 2003 distorted the alkalinity, or pH level, of the dust released when the twin towers collapsed, downplaying its danger. [...] The test results helped the E.P.A. avoid legal liability. [... and] had a costly health effect, contributing ‘to emergency personnel and citizens not taking adequate precautions to prevent exposures.’”

During a June 2007 Congressional hearing, former Governor Whitman received harsh criticism for her statements assuring ground zero workers and Lower Manhattan inhabitants of safe air quality.  When pressed to acknowledge that the toxic dust from the collapsed buildings contributed to illness, she declined. Whitman stated that a lack of conclusive evidence existed “linking the dust to disease.” She denied any presence of pressure placed on her to report the air safe in order to quickly reopen the financial district.  She also expressed no regret for her statements in 2001.

Victims of ground zero exposure brought multiple lawsuits against Christine Todd Whitman, however; the Second Circuit Court of Appeals found that Whitman could not be held liable.

In January 2011, President Barack Obama signed into law the Zadroga Act, which expanded the September 11th Victim’s Compensation Fund to include ground zero workers who died from cancer or respiratory diseases, “under the presumption that the cause was due to exposure during recovery efforts.” The act “sets aside money for medical care and $2.775 billion dollars to compensate claimants for lost wages and other damages related to the illnesses.”

Although initially excluded from the Act, the Act was amended to include cancer to the list of ground zero diseases, acknowledging a link between ground zero air and cancer. To date, 50 types of cancers will be covered.  Noah Kushlefsky, an attorney representing 3,800 ground zero victims, foresees that with the addition of cancer, the $2.775 billion will be exhausted before all the victims receive adequate compensation. The addition of numerous cancers to be covered by the Act comes on the heels of Congressional attempts to reduce the deficit. The Zadroga Act faces $300 million in cuts.

The FealGood Foundation, an organization dedicated to supporting the health and welfare of 9/11 first responders, compiled a list of known first responders with cancer and those who died from cancer on their website. Ground zero victims and their families are now seeking legal representation in order to access the victim’s fund.

Teaching Communication: A Chaplain’s Efforts to Strengthen the Doctor-Patient Relationship

[Ed. note, we are pleased to welcome Suzan Sanal to HRW. A second year law student at Seton Hall University School of Law pursuing a Health Law concentration, she is a representative of Seton Hall's Health Law Forum and is presently interning at the Community Health Law Project, a New Jersey based nonprofit advocacy and legal services organization, working on issues relating to the Affordable Care Act and grant writing.]

As Health Reform Watch author Jae W. Joo wrote back in 2010 , studies have shown a “woeful lack of communication (and a wide gap in perception) between hospital staff physicians and ‘their’ patients.” Chaplain Sharon Hindle, oncology chaplain and educator at Robert Wood Johnson University Hospital, knows this woe all too well.  Hindle began in 1998 working as a hospital chaplain to comfort patients during the most traumatic period of their lives.  She soon found out, however, that patients not only need comfort, but they also need advocacy.

“I end up being a liaison between the doctors and the patients,” Hindle stated in an interview with Health Reform Watch. “I really felt that people were the most vulnerable and the least capable at this point in their life, because they don’t know the language and they’re making a life altering decision. I became a chaplain because I first wanted to become an advocate.”

Hindle places blame on medical education, “There are very few opportunities where [medical students] are being told how to communicate the medical information that they have to the patient.”  In response to this, Hindle began running workshops for medical students, interns, and fellows in order to address patient concerns. Through these workshops, she said, “We’re teaching physicians to be engaging, loving, caring, and intuitive.”

These workshops teach skills such as how to have a family meeting, how to deliver bad news, and how to train the patient to provide self-care. In these workshops, Hindle stresses two questions physicians should be asking their patients, the first being “Can you tell me about your medical situation?” From this, physicians can gather what the patient, or the family member if the patient is not conscious, understands and assess their intellectual, language, and emotional skills.  Hindle said, “That question gives you their starting line- that way you don’t offend, patronize, or start way ahead of the patient or family’s capability to comprehend.”  She described that doctors sometimes think that a patient is experiencing denial if they do not seem to understand the gravity of the situation, when in fact, the patient simply does not comprehend his or her diagnosis.

The second question is “Do you have any questions before we begin this conversation?” Hindle said that asking this question before communicating medical information allows the patient and the family to “Open-up their listening skills because they’re no longer ruminating about what questions they need to ask.”

At the cardiac and neurology intensive care units workshop held in Robert Wood, she meets with students during their one-month rotation.  Hindle teaches the importance of asking these two questions and holds a discussion on a current case where students are having difficulty communicating to the patient and/or the patient’s family. At the University of Medicine and Dentistry of New Jersey (UMDNJ), she participates on a panel that includes a social worker, a physician, and a psychiatrist.  The panel reviews a case and each professional discusses their role in interacting with the patient. Students may then ask questions.

There are also opportunities for students to participate in small groups reviewing a mock case study with an attending physician and professor at UMDNJ and a professional considered trained in verbal skills, like Hindle. In review of these mock scenarios, Hindle says, “When you are telling someone that they have a life-threatening or life-ending illness, it’s terrifying because you don’t know how the patient and the family is going to react, so it sets-up a situation where maybe these young medical students try to dance around it and make it seem less catastrophic than it is.  It’s important for them to practice the words coming out of their mouth.”

Hindle finds that family practice and oncology are probably the most engaged specialties in running these workshops.  She labels these types of fields as “relational,” because the physician may have a relationship with this patient over a lifetime, which is why she stresses the value of communication.  Hindle contrasts these types of fields with specialties such as surgery and orthopedics, where a patient may have only a short-term relationship with a doctor.  She therefore believes there is less of a need for refined communication skills with this second group. Hindle said, “If I need brain surgery, I don’t care if the guy’s a jerk, I just need him to do this brain surgery once.  I just need him to be the best brain surgeon in the world.  But If I need a physician that I’m going to have a relationship with, there needs to be a symbiotic relationship where there’s trust.  Trust that I’m heard.”

If patients do not feel that a symbiotic relationship is present, Hindle strongly encourages patients to speak up. “As a patient, you need to be your own advocate,” Hindle said.  She continues, “If, in fact, you do not believe you are being heard, you need to speak up until you believe you’ve been heard.  Nobody is going to know your body as well as you.  It’s terrible, but you’re a consumer.”

Other particular areas which Hindle believes need to be addressed are: teaching physicians how to cope with loss, failure, and rejection. She believes there is a need to have an appropriate connection with a patient while not becoming emotionally involved.

In the broad view, Hindle understands that good communication with a doctor can have a profound impact on the patient’s physical well-being and recovery. Hindle said, “My feeling is that our body only has so much energy. [...] If you feel you’ve been heard by your medical team, it really alleviates stress.  Your body can now use all of that towards healing.” In close, Hindle continues to feel encouraged about the strengthening of patient-doctor communication, “In the ten years I’ve been at Robert Wood, I’ve seen a tremendous difference in the patient perception on communication.  They see that on the whole, doctors are communicating better and they really do care.”

Chaplain Sharon Hindle is an oncology chaplain and educator at Robert Wood Johnson University Hospital in New Brunswick, New Jersey.  She also volunteers her expertise at the University of Medicine and Dentistry of New Jersey.  Hindle has a blog entitled “Taken Oasis” (
http://www.takenoasis.com/).  She was also recently interviewed by Inside Jersey and a video interview is soon to appear on Robert Wood Johnson’s You Tube channel. Hindle considers Robert Buckman’s techniques in his book, “How to Break Bad News: A Guide for Health Care Professionals,” the gold standard for doctor-patient communication. She also notes Christina M. Puchalski, MD and Harold Koenig, MD as important voices in the field.

Benefit Concert for Africa Surgery in Morristown, NJ

Dicey Riley Band

To present a BENEFIT concert for Surgical Efforts in Sierra Leone, West Africa

Featuring Traditional Irish and Celtic Music and Song, Plus the

Bethel AME and Assumption Children’s Choirs

Singing selected choral works

Refreshments donated by parishioners

Saturday, May 12, 2012, 7:30-9:30 pm

Assumption Church

91 Maple Ave., Morristown, NJ 07960

Suggested donation: $15 per adult, Children Free

All proceeds go directly to procuring badly needed medical care and surgical

Treatment for poor farmers and villagers in Sierra Leone.

For more information call, 973-539-2141

[Ed. Note: I've said it before and I'll say it again: Africa Surgery does God's work. They accomplish a great deal with very little.]

Lower Cost, But at What Cost?

Late last month, Essex County Mental Health Association director Bob Davison went undercover to experience the current conditions at Dover Woods, a residential psychiatric facility in Toms River, New Jersey.  His subsequent report was published in the Newark Star-Ledger.  It paints a bleak and jarring account of life within the large mental health care facility, as the state continues to remove individuals from state-run hospitals and places them in residential health care facilities like Dover Woods.

Davison spent just over 48 hours in the facility.  He reported his room was “small” – featuring cigarette burns, rips in the bed spread and sheet, and broken dressers and closets.   However, more disturbing was what Davison experienced while interacting with other residents — he was sexually propositioned by an “actively psychotic” woman, had “no heat on a chilly night,” heard individuals “actively hallucinating” and “up all night screaming,” and broke up a fight between two individuals when officials were nowhere to be found.

In addition to what he saw inside the facility, Davison was disturbed by what he saw outside of it.  Averaging 275 police calls per year, Dover Woods is located near two major state highways, and the area lacks safe sidewalks — even though residents are free to come and go as they wish.  During his stay, Davison nearly witnessed a resident get hit by a car while crossing Route 9, one of the highways near the facility, something that is apparently not uncommon.  In fact, just a week before Davison’s undercover visit to the facility, Dover Woods resident Edward Braden was struck and killed while trying to cross Route 70 at 11pm on a Monday night.

Davison’s interactions with Dover Woods officials seemed surprisingly infrequent:  when checking in, officials quizzed him about his criminal history (and took him at his word).  Further, three days after he left the facility, Dover Woods officials finally called his emergency contact in search of him.

Davison’s experience highlights the worst of the residential health care facilities for the mentally ill — which cost the state around $68,000 per year per resident (compared to $301,000 per patient per year in a state-run psychiatric hospital).  He hopes his experience will bring more attention to the residential facilities and will lead to long-term changes.  And with many states cutting funding for mental health services previously mentioned here, investigations like Davison’s that draw attention the plight of the severely mentally disordered continue to be invaluable.

Trip Report, Sierra Leone, Tom Johnson, Jr., Africa Surgery, Inc. (ASI)

[Ed. note: I had the honor of meeting Tom Johnson a few years back, here at Seton Hall Law when I was still a student and he held a fundraiser through the school. AfricaSurgery, Inc. does God's work-- and I'm well pleased to publish his updates here on HRW. With the help of others, he does a lot-- with very little.]

October 27, 2011 – February 15, 2012

Umu Sesay was brought to us by a Catholic missionary priest in 2007.  Her small, seven-year-old spine was so deformed by a tuberculosis infection that I could hardly believe she was still able to stand and to walk around.  We had Umu complete a six-month medical regimen to cure her TB, and we sent her to Ghana in April of 2008 for surgery by a team from the Foundation of Orthopedics and Complex Spine (FOCOS).   Unfortunately, Umu’s chest cavity was so compressed that she was unable to reach the minimum breathing required by the anesthesiologist before she could be cleared for surgery.   But Umu held onto the small plastic device used to measure her inhalation capacity, and she practiced breathing through it after her return to Sierra Leone.  By January, 2010 her persistence had paid off.   She was finally able to make all four of the small plastic balls rise up to the top of a plastic tube, when she inhaled through the testing device.  Umu was one of the four patients ASI sent from Sierra Leone to Ghana for spinal surgery by a FOCOS team in November, 2011.   All four surgeries were successful, and Umu and her three “surgery-mates” are out of pain and the danger of paralysis.  They all can now stand up quite straight.

Umu, whose parents are both deceased, is staying for one month at the ASI base in Freetown where she is receiving nutrient enriched food.  She is being tutored by an ASI helper who is himself a college student and who is a former school teacher.  Umu surprised us with how knowledgeable she is for an 11 year-old girl from a farming village.  Umu will soon be placed with the Cluny Sisters (Catholic missionaries) where she will live at their boarding school for the hearing impaired.  She will attend a primary school for hearing children, until the school year ends in July.  We expect that her spine will have healed by then so that she can be returned to her aunt in their home village.  Umu will no doubt be required to perform many chores, but hopefully she will be able to continue to attend school.

In November, a friend took me to a small village a couple of miles beyond his own to see a six-year-old boy with a “swelling and a sore in his mouth” which turned out to be a fast-growing tumor.  We took little Alimamy Kamara, along with his father, to be seen by the German orthopedic surgeons who were visiting Sierra Leone at that time and who had a reconstructive-plastic surgeon on their team.  The tumor was determined to be inoperable.  The team supplied us with palliative pain medication in the form of suppositories and a liquid formulation that could still be swallowed by the boy whose throat was closing up.   Alimamy died 13 days later. But our visit to his small village turned out to be a blessing for a young man who was also suffering with a painfully swollen face.

Alusine Kamara, age 20, had an abscess in his lower left jaw.  At first reluctant to accept our offer of help, Alusine’s increasing pain eventually forced him to allow us to take him 100 miles down to Freetown.  There the only oral surgeon in the country began what turned out to be a three-month-long process involving admission to the government hospital, heavy doses of intravenous and oral antibiotics and pain meds, and two surgeries.  Two more men completed similar treatments for abscessed jaws while I was in-country, and another man and one woman are to be admitted for oral surgery before the end of this month (Feb. 2012).  This will bring to 18 the number of persons for whom ASI has provided this rather expensive treatment.  The average cost is about $450.  Such abscess can be avoided by simply having decayed teeth pulled in time, saving much pain for the patient, and expense for us.  ASI did have the rotten molars of 55 persons pulled, between March, 2011, and February, 2012, at a cost of about $3.00 each.

While I was in-country, one of my helpers, Foday Tarawalie, brought 38 new patients with eye problems and 21 old cases in need of follow-up medications to the Baptist Eye Hospital in Lunsar.  Nine of the new cases received surgeries to regain their eyesight which was being obstructed by cataracts and/or pterygiums.   The 29 other new cases were medically treated for a variety of conditions including glaucoma and potentially-blinding infections.  ASI is continuing to fund Foday who is continuing to bring old and new patients to the hospital for sight-saving treatments.

Before I arrived in Sierra Leone, 48 surgeries to treat persons with hernias had already been done with funds provided by ASI since February, 2011.   While I was in country 11 more hernia repair surgeries were arranged and funded by ASI, including one for a seven-year-old boy.   Hernias remain a very prevalent health problem in Sierra Leone preventing thousands of men, boys and women from living productive lives.

New Jersey was well represented in Sierra Leone this year.  Dr. Nina Seigelstein returned to the Holy Spirit Hospital with a team including another gynecological surgeon, a scrub nurse, and a midwife.  They preformed 22 major surgeries on women brought to them by ASI, as well as for others who came on their own.   A detailed account can be found at the website: www.oneworldwomenshealth.org.

A member of the ASI board of directors, Sergio Burani, made a nine-day visit to Sierra Leone for the purpose of making a photo documentary of our work.  Sergio fell into stride with the ASI team.  At one point Sergio asked a vendor in an open-air market in the capital city, Freetown, if he could photograph him and his produce.  The man refused but was overheard by the market head-man who, after we explained our mission, insisted that Sergio “snap” away with his camera as much as he wanted to.  All the fuss caught the attention of a passerby who told us of his mother who was in the main government hospital.  Her family could not afford to pay for the medications needed to treat her badly-infected foot which had suffered a wound when a large mortis fell on it.  The young man explained that the entire congregation of their church had decided to pray for his mother to be healed as the only solution at hand.  We paid a visit to the hospital where we heard that the foot might have to be amputated.  We ended up transporting the woman and her daughter 100 miles up-country to our base near the Holy Spirit Hospital.  The woman is being treated as an out-patient for the infection and for a low hemoglobin blood count.  She is scheduled to receive a skin graft by the next reconstructive plastic surgery team that will visit the hospital in early March.  She will not have to lose her foot.

While there, Sergio also instructed six disabled students, three with severe hearing loss, and three post-operative spinal surgery secondary school boys, in the principles of photography and the use of six non-automatic, non-digital cameras which he donated.  One of the hearing-impaired students has already set off on his own, photographing students at their graduation ceremony.   He now is trying to scrape together the money to have his film developed in the hope that he will be able to reap a small profit selling his prints.

On behalf of all of the many Sierra Leoneans whom your generosity is allowing ASI to help, I want to thank you for your support and for your prayers.   I wish to extend special thanks to the Knights of Columbus George Washington Council 359, which gave ASI $3,000 last year.  This more than covered my personal travel and living expenses, enabling all of your donations to go directly to providing medical, surgical, and health care.  We at ASI will continue our work in Sierra Leone to the extent that our funds will allow.  If you are able to join us in this effort, checks can be made out to Africa Surgery, Inc., or to ASI, and mailed to:

Tom Johnson

Africa Surgery, Inc.

70 Macculloch Ave.

Morristown, NJ 07960

You can also donate on line at our website:  www.africasurgery.org

AT&T and Intuitive Health Team Up to Bring Down Health Costs and Reduce Hospital Readmissions

Hospital readmissions for chronic diseases such as asthma, congestive heart failure and diabetes are said to have been estimated to account for over 80% of hospital inpatient stays. In an effort to reduce these admits and consequently lower healthcare costs, AT&T and Intuitive Health have collaborated to pilot a home-based remote patient monitoring solution which would allow patients to spend more time at home and engage in their own care rather than with healthcare providers at medical facilities. Through wireless connectivity provided for by AT&T, the system works to send data from the patients’ unobtrusive personal health device, to a secure software platform integrated to the health ecosystem through Intuitive Health’s technology–emphasis placed on the confidential nature of the transmission of patient’s personal information.

“Innovation is desperately needed outside the four walls of the hospital,” said Eric Rock, CEO and Founder of Intuitive Health. “In order to increase our nation’s quality of care and gain control of our healthcare spending, patients of all ages and technical ability must be given intuitive tools to improve their own health, while remaining engaged and monitored by their caregivers remotely.”

In the April 2010 Position Paper on “Technologies for Remote Patient Monitoring in Older Adults” by the Center for Technology and Aging, it was hypothesized that the U.S. health care system could reduce costs by nearly $200 billion within the next 25 years if remote monitoring tools are utilized for chronic diseases. To be sure, figures are not easily discernible; the amount and types of people who choose to utilize such treatment cannot be easily predicted.

The collaboration between AT&T and Intuitive Health is not the first of its kind; and with the increasing popularity of Smartphones, it is reasonable to anticipate that mobile technology will play a role in rise of the use of remote patient monitoring services. It is, perhaps, however, worthwhile to reconsider Michael Ricciardelli’s related post written three years ago, as a way to evaluate the role technology has and may continued to play in areas of health reform.

Of provident kidney stones, health insurance and a CT Scan that may have saved my life

As we bid farewell to 2011 while ushering in the new year, some thoughts about health care — my own — emerge. I underwent major surgery this last year, having had roughly 15% of one kidney–or, more precisely, the cancerous portion of one kidney– removed. I chose to blog about the experience, chronicling the process from the onset, back when the tumor was initially thought to be a kidney stone or a cyst. But found early, it was small, they say they got it all and that it had not spread. I was lucky. A relatively rare form of the disease (roughly 50,000 cases per year), the survival rate for kidney cancer is not great because it is largely asymptomatic and is not generally tested without a family history for such.  Often, by the time someone wanders into a doctor’s office with complaints of an aching lower back or bloody urine, the tumor has grown to the size of a baseball, the cancer has spread, and the prognosis is not optimum. My tumor was found, as is so often the case, “incidentally” as they were looking at something else.

And that something else has me thinking; without it I’d be walking around with a ticking time bomb firmly ensconced and concealed in my kidney.  Which brings me to July of this past year when I awoke torn by excruciating pain from what I was to later discover were two kidney stones. Wave after wave of fortunate pain brought me to the emergency room. A CT scan discovered the stones–and something else– that ultimately turned out to be that cancerous tumor approximately 2.2 cm, lying in wait.

And there’s the rub. I had health insurance. Without health insurance I might have still gone to the hospital–the pain was immense– but I would have refused the CT scan.  I know of what I speak. A lack of health insurance is a state of affairs and a mindset that is distinctly different from that of having health insurance: as one deprives Peter to pay Paul “home medicine” takes on new meaning. And if forced to see a doctor, one minds the bottom line always ready to refuse treatment, especially avoiding diagnostic tests such as x-rays, CT scans and MRIs as they are the well traveled road to poverty if not bankruptcy.

And there it is. Without health insurance I would have refused the CT scan which may well have saved my life.

Instead, I ultimately had one of the nation’s top surgeons (the brilliant Dr. Paul Russo, most recently described by Maureen Dowd in the NY Times as “exuberantly blunt”) at Sloan-Kettering pluck the ticking time bomb from my body, while saving the affected kidney and me.

In the hands of a less skilled surgeon, my entire kidney may have been removed (it’s easier), and even if alive I’d have spent the rest of my life at a  increased risk for hospitalizing events from chronic  kidney disease, heart disease, and even hip fractures. The bill for my stay and surgery was roughly $27,000; my co-pay merely double digits (thank you Cigna).

And as I sit here reflecting on my good fortune and the providence of kidney stones timely sent, I cannot help but think of all those men and women across America without health insurance (or with junk insurance) who are left to face this coming year with health issues and hard economic choices each day–choices which will lead many to practice “home medicine” when faced with excruciating pain and the hidden harbingers of disease. Choices which will leave prescriptions unfilled. Choices which will lead many to refuse that costly x-ray, CT scan or MRI which might have saved their lives.

There but for the Grace of God–and a job with good health insurance.

And that’s not hyperbole: it’s a new year; it’s estimated that 45,000 people in America will die in it due to lack of health insurance.

Still Alive and Well

For those of you keeping track at home, an update of sorts is in order. My surgery went well on Monday. I awoke from the anesthesia, and I now write this without the roughly 15% of my kidney which had shown itself to be stubbornly  non-compliant. I am told “they got it all” and that it doesn’t look as though any further remedial therapy (i.e., chemo, radiation) will be necessary.

I’m told I awoke from the operation talking law, which had at least one surgeon laughing and saying that I was “hopeless” while muttering something else (she was right)  about lawyers. Having had my stomach muscles cut through in what appears to be about a ten inch gash, it hurts to cough or laugh but not anymore to walk–slowly. To leave the hospital I needed to walk a total of 14 laps around, equivalent to one mile.  I did either 20 or 21 and was discharged after 2 and a half days.

My stomach is strangely distended and, because of the cut to the core muscles, no longer symmetrical: it looks like an oddly flattened but fully inflated beachball. I’m told this will dissipate in time. But really– I woke up– surrounded by friends and family, still alive, the rest is just details.

But I am struck by how lucky I was– if I hadn’t had health insurance I probably wouldn’t have went to the hospital when struck by a pair of kidney stones in the first place, despite the excruciating pain. And even if I did go, I would have balked at the expense of the CT Scan which initially found the tumor. In addition (thank you Cigna), after a second opinion I was able to articulate my needs and have a world class surgeon in a world class hospital perform my surgery. The tumor, though small, was in a tricky spot– and a less skilled surgeon could have opted to have taken the whole kidney, a result which bears far greater risk for hospitalizing events over time, everything from heart problems to fractured hips.

Not everyone is so lucky.

The twelve-year survival rate for partial nephrectomy patients similarly situated to me is 96%. As the tumor grows and the stage progresses, that number drops significantly. And unfortunately, kidney cancer is largely asymptomatic. Men age 40 to 60 are most susceptible, and the most common symptoms are lower back pain and exhaustion. I know very few middle aged people for whom those aren’t just the symptoms of life. The other major symptom is, sometimes, blood in the urine–which is often pushed aside as just the result of kidney stones. And so undetected, the tumor grows. But, thank God, not this time.

And for all of you who offered your kind thoughts, advice, experience and prayers throughout this– thank you so very very much– it made it all so much easier.

I never really liked that part of my kidney anyways

I’ve been putting off the writing of this update, thinking perhaps that in writing these words, that which seemed surreal enough to be a part of someone else’s life would become more painfully my own. My last trip to Sloan-Kettering (thank you Cigna) did not go as I had hoped: “Mr. Ricciardelli, it turns out that thing we thought was a cancerous mass on your kidney is actually a stray piece of popcorn,” is not what anyone said. Turns out that although blessedly small, that thing on my kidney has blood flow to it and is a prime candidate for removal.

But again, at 2cm x 2.5cm it is blessedly small– 3cm to 7cm is considered small, this is, in a sense, despite the way it feels in my life, smaller than small. It is, however, in a tricky spot–lower portion of the upper pole–but inside the kidney itself, as opposed to outside and more readily accessible.  I’m told that this position narrows down the number of surgeons in the world who can actually perform this surgery, and there is a chance, if things go wrong, that I can lose my whole kidney instead of just part.

I have the surgeon (thank you again Cigna) and I have the date (beginning of November), what I don’t have is any sense of how I should be taking all this. I postponed the surgery a few weeks in order to attend to some work projects that simply needed to be done, and I was able to lose myself in them sufficiently to not think about much otherwise. They are now done.  I went to see my primary care physician today for an OK physical for surgery–I apparently am.  All that’s left is a few weeks and my appointment with the scalpel and the dreaded anesthesia.

And as I prepare to have a piece of my kidney removed, my mind, a decently read but unruly thing, turns to the admonitions of the 19^th century French symbolist poet turned gunrunner in Africa, Artur Rimbaud. Cancer ridden and returned to France he lay misdiagnosed and amputated on what would be his deathbed and wrote:

Where are the paths between the mountains, the cavalcades and promenades, the deserts, rivers and seas? And now living a legless existence!

….Were someone to ask my advice, I would tell him: You’ve come this far: now don’t let them amputate. Get hacked up, ripped apart, torn to pieces, but don’t tolerate amputation. If death comes, it’s a far better thing than life with too few limbs. Many have said as much; and if I had to do over again I would do it differently. Better to live a year in hell than to be amputated.

Losing a kidney or a part thereof is not losing a leg. And it’s probably never good policy to get one’s medical advice from a dead French symbolist poet–especially one I tried so hard to emulate in my teens. But I’d be lying now if I said that a part of me didn’t want to pack that same old traveling duffel bag I have stored in the trunk of my Jaguar and set out reckless again for “the paths between the mountains, the cavalcades and promenades, the deserts, rivers and seas.”

Second Opinion

Perhaps two of the nicest words in the English language: second opinion. Mine went better than expected as evidenced by my full complement of kidneys this week. Actually, as the right one has a mass on it, perhaps the complement is fuller than I would like– but not quite as full as my local community hospital had warranted.

The community hospital had initially, through ultrasound and CT scans with an without contrast, diagnosed the mass of the “worrisome,” and hypodense lesion as being 1.5cm– a measurement they adjusted upwards to 3.1cm after an MRI with contrast (it struck me at the time that even the average government economist forecasts better than that).

Small in terms of kidney cancer is basically 3 to 7 cm. At my community hospital, that 3.1 cm read was enough to have me on the fast track to losing at least a part of my kidney– “the quicker the better.”

The doctor at Sloan-Kettering, one of the top surgeons in the US (thank you Cigna),  did not find the images of any of those tests sufficiently clear to determine size– and told me, he “was not impressed” with the mass on my kidney. I was never so happy to be unimpressive in my life. A subsequent reimaging put the size at 2.5cm. A horse of a different color. A smaller and slower horse. A horse that can wait. A relief I don’t think I can sufficiently describe in words.

My conversations with my local urologist and two similarly situated kidney cancer patients who had already had portions of their kidney removed, as well as a tremendously helpful Yale trained oncologist introduced to me by a friend and colleague at another blog, gave me the reasonable belief that this week I would be sans a part myself. My worst fear was that because the mass was said once to be in the middle of the kidney (another time it was described as higher), it might not be suitable for a partial nephrectomy and that I would lose the whole kidney. But all that was based on  3.1 cm and my relaying that  diagnosis to others. 3.1 is not 2.5.

I had not even hoped to be so unimpressive.

With a serious instruction to make some lifestyle changes, as this particular doctor at Sloan “treats the whole patient,” I go back at the end of the month for another consultation. Truth is, with an approximate general growth rate of 1/2 cm per year, in 6 months part or all of that kidney may still have to come out. We’ll see. But I’m living, at least for now, in the 40 to 45% chance that nothing at all may have to be done. Roughly a third of all suspected kidney tumors turn out to be, upon removal, benign. Ten percent are said to be indolent– or aggressively lazy. I’ve always been fond of that word, “indolent,” and can at times be so. I’m hoping this mass on my kidney is as well.

I am relieved, but honestly exhausted. I spent last week preparing for what I reasonably thought (based on bad information) was inevitable. I spoke with my priest, made arrangements for my children, and began shopping for a used Jaguar.

And there it was, the two sweetest words in the English language: “second opinion.” My local urologist insisted I get one. Smart man.

I’m still thinking about the Jaguar.

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