Where is the Health Care Poverty Gap?

Where is the Health Care Poverty Gap?
By Gary Votour, MHCA

* In Wisconsin, the state is providing Medicaid coverage for adults in 2014.

The Affordable Care Act is already cutting health care costs, especially at hospitals that in the past provided charity care for uninsured, low-income patients. The reduction in charity care in states that have expanded their Medicaid programs with federal funds means the costs for this care are no longer being shifted to insured and self-paying patients, which makes health insurance more profitable for hospitals and insurers without increasing consumer costs.

But this drop in costs is happening only in the states in about half of the nation that have expanded their Medicaid programs. The other states — mostly in the South and the Plains — have been involved in political struggles that have blocked expansion of health insurance for their poor residents.

Expanding state-run Medicaid assistance programs has been called critical for the success of the new federal health care law. In states that haven’t expanded Medicaid, it is currently available to those who have incomes at or below the federal poverty line, which in 2014 is $11,670 for a single person and $27,910 for a family of four. In the states that have expanded their Medicaid programs, the eligibility level is 138%, or $16,104 for an unmarried person and $37,375 for a family of four.

The federal health law was written with this expansion in mind, and it offers most people with incomes ranging from 138% to 400% of the federal poverty level the opportunity to be eligible for federal subsidies as they purchase health care policies through the new health insurance exchanges.

These subsidies were to be paid for by decreases in Medicare reimbursements to hospitals and doctors. The U.S. Supreme Court decided that the federal government could not force states to expand their Medicaid programs, but the cuts in Medicare reimbursements did not change.

Unfortunately, the cutoff point for a subsidy was set at 138%, leaving those between 100% and 138% with no options in the states that didn’t expand their Medicaid programs. The resistance to Medicaid expansion is creating a poverty gap.

“It’s a crime,” Lisa Dubay, a senior fellow at the nonpartisan Urban Institute, said of the poverty gap. “These are the most vulnerable people in our society. They have no other access to health care. We have no way to take care of them and that just seems wrong.”

Aside from the ethical dilemma of not providing health care to low income people who don’t have the ability to purchase subsidized insurance, there is a significant financial cost for the states that aren’t expanding. This cost is being passed on to providers and insurers alike, and they are beginning to exert pressure on state governments to agree to the federally funded expansions.

In the states that haven’t expanded Medicaid, at least 4,805,380 people are in the poverty gap.

These people won’t receive federal subsidies to help them purchase insurance, and they will continue to require costly charity care that is shifted to those with insurance and self-payers.

The Americans who fall into the poverty gap in their state also won’t be able to get preventive care they need and this in turn could shorten their lives. In addition, the number of bankruptcies will continue to grow, as nearly 2 out of 3 filings are caused by medical bills.

No one can predict the outcomes of these efforts, but one thing is certain:
The ones who are suffering the most are those being left behind in the health care poverty gap.

Here’s a closer look at four states — Maine, North Carolina, Utah and Virginia — that haven’t expanded their Medicaid programs with federal funds. These states have adopted widely differing approaches to the question of Medicaid expansion.

Maine

Maine Governor Paul LePage (R)

In Maine, Gov. Paul LePage, a Republican, who has vetoed legislative attempts to expand Medicaid in his state, cites the future costs once the federal subsidies for expansion end. The Democratic majority in the legislature plans to continue to introduce and pass legislation aimed at expanding Medicaid for the 24,390 people who are in the poverty gap.  Jeffrey Austin, vice president of government affairs and communication at the Maine Hospital Association, said the state’s 39 community-governed hospitals need Medicaid expansion to make up for scheduled cuts in Medicare payments. “The logic behind the tradeoff is sound,” he said in testimony. “Hospitals will receive less reimbursement under one program (Medicare) in order to expand another program (Medicaid). When the Supreme Court ruled that Medicaid expansion was optional, it did not rule that the associated cuts were optional as well. So hospitals across the country faced the prospect of significant pain (Medicare cuts) without the bargained for gain (Medicaid expansion). That is why you have seen significant hospital advocacy in favor of expansion in Maine and across the country. So it matters to us that people understand 100% federal financing of expansion in large measure equates to hospital-financing of expansion. Hospitals can not afford $30, $50 and $100 million annual cuts in Medicare without the benefit of Medicaid expansion.

North Carolina

NC Representative Rick Glazier (D)

In North Carolina, GOP state legislators have refused to expand Medicaid for the 318,710 people in the poverty gap, and are considering cuts to the state’s Medicaid program. Two weeks ago, 100 members of the North Carolina Hospital Association joined together to tell states legislators how difficult these cuts would make their job of delivering health care to current Medicaid participants. They told lawmakers that government programs pay for 2 out of every 3 patients hospitalized statewide and generally at rates that are below the cost of care. “They mean truly people getting care, people not, people getting jobs, and for some hospitals, they may mean survival,” said Democratic Rep. Rick Glazier. In recent years, after control of both houses shifted to Republican hands, the conservative agenda that trimmed rights and cut back on social services set off widespread citizen protests called “Moral Mondays.” To date, over 1,000 people have been arrested statewide for acts of civil disobedience.

Utah

Utah Governor Gary Hebert (R)

In Utah, Republican Gov. Gary Hebert is trying to work with the federal government to create a program to use federal funds slated for Medicaid expansion in his state to help the 57,850 who would be in the poverty gap purchase private insurance plans. The governor’s plan would use federal Medicaid funds to purchase health care insurance for all residents earning less than 138% of the federal poverty level. Unlike other Medicaid expansions, this proposal would allow Utah to drop the eligibility to 100% of the federal poverty level in three years, when federal officials expect the states to pick up 10% of the cost of the expanded Medicaid programs. Opponents of the proposal are worried that employers will cut back on insuring low-earning employees and that at the end of the three-year pilot project, there will be more uninsured residents if the state returns to the 100% level. Utah House Speaker Becky Lockhart said she would rather use $35 million in state funds for limited coverage. “Attaching ourselves as a state to Obamacare is extremely concerning to me,” she said.

Virginia

VA Governor Terry McAuliffe (D)

In Virginia, a court battle is brewing between  and the GOP-led state legislature over 190,840 people in the poverty gap. Citing a moral imperative, McAuliffe tried to use his existing executive powers to create a procedural path to provide Medicaid to Virginia’s 400,000 potentially eligible adults. “Secretary Hazel will have a plan on my desk by no later than September 1st detailing how we can move Virginia health care forward even in the face of the demagoguery, lies, fear and cowardice that have gripped this debate for too long,” McAuliffe said about Bill Hazel, the state’s Secretary of Health and Human Services. Virginia’s House GOP leaders warned the governor that they will block him. “We are prepared to challenge this blatant executive overreach through all available avenues, including the court system, ” said a joint statement recently by Republican House Speaker William Howell. McAuliffe just vetoed seven items, including an amendment passed by Republicans that stated Medicaid can’t be expanded unless the General Assembly explicitly appropriates money for it.

 

This article was originally published on NerdWallet’s Advisor Voices.

Learn more me on NerdWallet’s Ask an Advisor
or visit my web site at Fierce Advocacy.

Source: Kaiser Family Foundation

The ACA begins to lower costs for all, in some states more than others

The ACA begins to lower costs for all, in some states more than others

By Gary Votour, MHCA

The Affordable Care Act is beginning to have its predicted impact on health care costs across the country. Many hospitals are finding reduced demand for charity care—that is, care provided for patients who cannot pay for hospitals services due to low income or a lack of insurance. This is happening only in states that expanded their Medicaid programs using the incentives and funding provided by the health law. Still, this change is beginning to have a significant effect on the cost of health care for everyone.

In the United States, we spend more on health care than any other country in the world, about 17% of our gross domestic product. Yet by most standards of health care quality, we do not rank the highest. This is mainly due to our approach to health insurance, where an unregulated market of insurers has been able to make huge profits that bring few benefits to care quality. Another major reason is that hospitals are required to provide care for everyone, whether or not they have insurance. Hospitals do not simply provide charity care at their own expense; they instead shift the burden to other patients by raising the cost of their services. This increases the cost of health care for everyone through higher premiums for those with insurance and higher costs for those who pay out of pocket. The health law is changing both of these features in an attempt to lower costs and improve access for everyone.

Two of the key provisions in the law are limitations on the amount of profit health insurers can make from selling insurance and an expansion of health care services for those with low income through increasing the income limits for state-run Medicaid programs. The Affordable Care Act originally sought to require all states to expand Medicaid with federal funding, but in 2012 the U.S. Supreme Court ruled that each state had the right to decide for itself whether to expand its Medicaid programs. In a show of opposition to the law, 24 states have decided not to expand.

The Kaiser Family Foundation reports that 7.6 million Americans who could be eligible for Medicaid live in states that have decided not to expand Medicaid. In these states, public attention to the cost-saving facts of Medicaid expansion are making a difference in how likely they are to implement expansion in the future. In many of these states, notably Georgia, Missouri and both North and South Carolina, protest movements have arisen to demand a legislative reversal that would allow Medicaid to be expanded with federal funds to cover health insurance for those uninsured millions. Medicaid expansion in these states will not only lower the number of uninsured but also reduce health care costs for everyone. The more people who are eligible within a state, the greater the cost-saving effect will be if the state decides to expand Medicaid.

Using the recent data from the Kaiser Family Foundation report, I have created this map. States that have expanded Medicaid are shown as green. States that have not expanded Medicaid are red, and the numbers in those states are the number of people who would be eligible for Medicaid if they did expand.

A new study by the Colorado Hospital Association examined charity care provided by 456 hospitals in 30 states during the first half of 2014. Half of the states in the study had expanded Medicaid programs and half had not. In the expansion states, the study found a 30% decrease in hospital spending for charity cases. Many of those hospitals had provided on-site staff to assist charity care recipients in enrolling in Medicaid programs. As these states continue to sign up people for Medicaid, it is expected that the cost of charity care will continue to decrease. The study also found a significant decrease in self-paying patients who had no insurance, as many of these patients became eligible for Medicaid under the expanded programs.

In governors of Ohio and Kentucky each found ways to use legal quirks to expand Medicaid, despite legislative attempts to block it. Ohio’s John Kasich, a Republican, used an administrative board that normally oversees state contracting to approve the expansion. Kentucky’s Steve Beshear, a Democrat, was able to order the expansion because the eligibility rules are set in state regulations that can be changed by executive order. Virginia Gov. Terry McAuliffe, another Democrat, is exploring the option to bypass the legislature by issuing an executive order that would enroll 400,000 Virginians in Medicaid.

Hospitals are also complaining in the states that have not expanded Medicaid. Two hospitals in the Jacksonville, Alabama, area have filed complaints with the state that the decision not to expand Medicaid has cost them $1.2 million in revenue this year already. As more hospitals realize that the higher costs in these states are making them less cost-effective than hospitals in expansion states, the pressure will continue to increase.

In addition to expanding Medicaid and limiting insurance companies’ profits, another important factor is that the Affordable Care Act mandates everyone must have health insurance. Large amounts of federal subsidies are helping those with limited income to afford qualifying insurance, but the Medicaid expansions decrease the need for these subsidies. In fact, the expansion states are showing huge decreases in the overall numbers of uninsured, most notably in Kentucky (down by 50%), Minnesota (down by 40%) and New Jersey (down by 38%). Increasing the number of insured people helps the insurance companies remain profitable. In insurance, spreading risk across a larger, healthier population returns greater profits than does overcharging a smaller, less-healthy population.

The opposition in states that are not expanding Medicaid will continue to be costly to those living there. Insurers will be able to charge higher premiums, and hospitals will continue to shift the costs of charity care to its insured and self-paying patients. Most importantly, people with low incomes will not be able to enjoy the benefits that insurance provides to improve health, such as preventative medicine and increased lifestyle awareness, that hospitals do not provide as charity care. As the old saying goes, an ounce of prevention is worth a pound of cure.

 

This article was originally published on NerdWallet’s Advisor Voices.

Learn more me on NerdWallet’s Ask an Advisor
or visit my web site at Fierce Advocacy.

Un-Informed Consent.

Un-Informed Consent.
By Gary M. Votour

If you are a patient facing surgery during a major, life-threatening illness,
or you are a surgeon proposing surgery for that patient,
you MUST read this before giving or seeking informed consent.

Near the end of 2005, my wife Lyn and I were at one of the largest surgical hospitals in the country, waiting to give her informed consent for surgery to remove the second vertebra (C2) from her neck. Lyn had a congenital form of bone cancer, Chordoma. The cancer had been found in a routine X-Ray following a car accident almost a year before and we had been to a half dozen local oncologists and orthopedists before we were sent to a large cancer hospital and then referred to the surgical hospital. Traditional treatments for bone cancer like radiation or chemotherapy had been ruled out long before as too risky or ineffective.

Chordoma Cells

Doctors had told us that with Chordoma, there were only two outcomes if untreated. The first was that the cancer would travel to her head, causing fatal bone spurs to grow into her brain. The alternative was that the weakened vertebrae would simply break apart. If that happened, the spinal cord would be severed, and her brain would lose control of her heart and lungs. She would literally have dropped dead, or had her brain crushed by bone tumors from within.

After months of misdiagnosis and false leads, the doctors at the surgical hospital had finally done a biopsy of the cancer and identified it as Chordoma. This is a very rare type of cancer that only affects hundreds of people each year in the United States. Not only is it difficult to diagnose, but the small number of patients affected by it means very few doctors have experience treating it. The average life expectancy is only 5 to 10 years without treatment, and for Lyn that treatment was a C2 Chordectomy. This entailed the surgical removal of the second vertebrae in her neck, intact, through the back of her throat and its’ replacement with titanium hardware. (About Chordoma, 2008)

Lyn was very fearful of losing her mind if the cancer reached her brain, and had decided to take the surgical route. The confidence of the doctors, especially the surgeon who would be performing the surgery, led her to decide this was her only chance to live a longer life.

Yet I sit here, alone since 2008, missing her. You see the surgeries did not go well. Following the second phase of Lyn’s C2 Chordectomy an ischemic stroke deprived almost a third of her brain of the blood it needed to survive. It left her mostly paralyzed and in permanent pain. The woman who walked into the hospital with me at her side… my wife of almost thirty years… rode home in ambulances six months later. most of which we spent in the Intensive Care Unit (ICU) together. She was unable to walk or eat, with a whisper of a voice, and had a tube in her stomach for feeding, a permanent catheter for urinating, and a bag attached to her stomach where her colon had been removed due to complications during recovery. She cried in her sleep for the next three years, while I sat next to her. I was unable to do anything but manage her care in our home, which had become the ICU we thought we had escaped from. Eventually the results of that stroke, not the cancer, ended her life with her decision to stop eating and drinking. I sat by her side as she took her last breaths.

After almost 30 years together, I was left alone with a massive emotional hole in my heart that will never fully heal. For a long time, I focused on surviving the greatest emotional suffering most could ever even imagine, the loss of my wife. I waited for the intense pain of what we had gone through together to abate. Eventually I realized that my heart would always hurt from the loss I felt, and I learned I could live with that pain. I decided to instead focus on giving our experience a greater meaning. I returned to school, earned a Master’s degree in health care administration and became a Patient Care Advocate. From great adversity often come great advocates.

I try very hard not to second guess the decisions we made then to have the surgery, but I have had the most difficulty coming to terms with one lingering question… were we given the information we needed to truly allow Lyn to give informed consent? In order to answer that question, one needs a clear understanding of what informed consent is and the value it provides. I hope that by explaining this answer to patients who are facing similar choices, I can save them or someone they know from making a wrong choice. I also hope to show their doctors how to ensure truly informed consent is given.

I also write this with doctors in mind… if you are a doctor, I hope I can instill in you the desire to examine how you pursue consent from your patients. Although what I am about to say may make some of them uncomfortable, my goal is to help them to live well with the ethical ramifications of the pursuit of consent by ensuring that consent, when given, is truly an informed decision.

So let us start at the beginning. What is informed consent?

The origins of the concept of informed consent are found in the ethical principles of enhancing a patient’s wellbeing (do no harm) and the need for respecting a patient’s right to make decisions for themselves that are based on factual information (autonomy). This belief has its roots in a famous court case almost 100 years ago which stated “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” The value this has comes from how it is now interpreted: that every patient “should be able to participate in decisions about their medical care, weighing the risks, benefits, and alternatives of a proposed intervention to ensure that the care they receive reflects their goals, preferences, and values.” (Meisel and Schenker, 2011)

Informed consent is generally given in the form of a patient signature on a form prior to every procedure or treatment in a health care setting, from surgery to participation in clinical trials. As described by Aiken (2009), it has 8 components. The form must include the name of provider(s), the patient diagnosis, a disclosure of conflicts of interest, a description of the procedure or treatment and its purpose, a description of the potential risks, likely outcome and available alternatives and a statement of consequences of no treatment. Health care professionals have several key responsibilities when seeking informed consent. It is specifically the responsibility of the physician performing the procedure/treatment to obtain the consent, although the actual presentation of the form can be accomplished by his/her authorized agent, such as a Physician’s Assistant. Others providers (ex. nurses) can act as witness to the signature. Effort must be made to ensure that patients who speak a different language are provided with translation services. When circumstances require a third party (a spouse or other proxy holder) to give the patient’s consent, the conversation leading to that must be documented as well.

Truly informed consent requires a truthful statement of the potential risks and most likely outcomes.
What happens when we can not trust our doctors to be truthful to us, or even possibly to themselves?

In a 2009 survey of over 1900 doctors was conducted by the journal Health Affairs. They found that “approximately one-third of physicians did not completely agree with disclosing serious medical errors to patients, almost one-fifth did not completely agree that physicians should never tell a patient something untrue, and nearly two-fifths did not completely agree that they should disclose their financial relationships with drug and device companies to patients. Just over one-tenth said they had told patients something untrue in the previous year.”

That means a third of the doctors surveyed would hide an error, a fifth of them felt it was all right to mislead a patient regarding the truth, and a tenth of them admitted to lying to a patient within the last year. That equates to a fair amount of uncertainty that a doctor will always be honest even if you ask them the right questions when deciding to give informed consent. (Lezzoni et al, 2012)

So… as shocking as it is to realize some doctors will admit to lying about errors,
does that mean they would be less than truthful when seeking informed consent?

Apparently it does. ABC News in 2012 ran a story called “8 Things Your Doctor’s Not Telling You”. On the list of what they will not say is “I’ll always push surgery”. They reported that many doctors will always recommend surgery as the only option, even when studies show that some surgeries do not actually improve patient outcomes at all. “You should always ask what the alternatives are to surgery, including an approach that most physicians feel uncomfortable offering: to do nothing,” stated Christopher Meyers, head of the Kegley Institute of Ethics at California State University.  (Dailey, 2012)

All too often we make choices based on incorrect information. Lyn had been told the cancer would proceed a certain way, but my own research later shows that was not a certainty. Without evidence of growth, a Chordoma site can stay dormant for years. Despite multiple X-Rays, CTs and MRIs there was no evidence to indicate that her lesion had grown in the ten months since it had been discovered.

If it was me, I’d have the surgery.”
or
 “If it was me, I’d skip the surgery and live my life to the fullest.”

Not only were there possible flaws in Lyn’s diagnosis, there was an absence of personal opinions from those recommending the surgery. Not one doctor ever said “If it was me, I’d have the surgery.” Nor did they say, “If it was me, I’d skip the surgery and live my life to the fullest.” We did not ask them that question. We assumed that because they proposed it as a solution for her, it was what they would have chosen for themselves. And today, looking back, I believe that assumption was the single greatest mistake we made.

I recently read an article written by Ken Murray, a physician at USC titled “How Doctor’s Die.” What he had to say on this subject made me think hard on what had happened to Lyn. He wrote, “Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist.”

Those are strong words indeed…
“misery we would not inflict on a terrorist.”

He is correct… when futile care is brought to bear on a terminal illness, what is accomplished? Often it nothing but pain, suffering and anguish. The last few days or weeks are spent clouded with medication to relive the pain and suffering, and often that pain is from the treatment itself. If there is no cure to grasp, no solution at hand… why then do we as patients often choose futile care rather than begin to prepare for death? I used to think it was because we are tenacious beings who simply want to live no matter what the cost. I felt that every day lived, regardless of accomplishment within that day, was important. I was wrong. This is the bitter pill of health care we all will likely face someday, either for ourselves or with someone we love… and it is simple.

Accepting death in the face of a terminal illness is not giving up. I am not advocating that everyone with an illness that is terminal should forgo treatment… That is not what I mean. What I am talking to you about here is the situation where there is no realistic treatment that will have a positive outcome. It is fine to buy more time with treatment, but I am stating that we all need to understand what the quality of that time would be when making the decision to pursue it.

When a surgery has a high risk, we are making a choice between treatment and doing nothing. Would we give up up months spent living, spending time with our friends and family, fulfilling our dreams and goals, checking off the items on our individual ‘bucket lists’… in exchange for a year or two spent extension of life spent in pain, staring at a ceiling, watching those who love us suffer along with us? Sometimes that is the actual question we are answering when we decide to give consent to a treatment or not. Sometimes giving informed consent means asking yourself “Do I trust this doctor to cut me apart and reassemble me without error?” Those are the actual choices Lyn made when she gave her consent. I believe we do not always receive the information we need to make that informed consent… and we need to understand why.

Dr. Murray believes the reasons for this are three-fold: the patients, the doctors and system. Patients facing a life ending illness are scared of dying and overwhelmed by despair. Desperate for a different outcome, when a doctor offers them a choice of survival, no matter how slim it is, they grasp at it without thinking of the alternatives. If you are drowning and someone throws you a life preserver, do you look to see if it is tied to a boat or an anchor? It is hard to blame a dying patient for wanting to live and despair does cloud one’s judgment.

Then there are the doctors. Dr. Murray points out, even doctors “who hate to administer futile care must find a way to address the wishes of patients and families.“ He argues that because many doctors are poor communicators, they often find themselves in situations where they agree to the wishes of a patient and their family. They lack the ability to explain the downside of a particular treatment or course of action, and focus on the outcomes that end in success. It is, after all, a calling to save lives that brought most of them to their chosen occupation. Take his opinion along with the study I mentioned earlier… factor in that percentage of doctors who will lie about errors or give a rosier picture of a prognosis… and the blame shifts even more to them.

I would add that, from my personal experience, sometimes it even goes a bit further. Surgeons in large hospitals are often under extreme pressure to perform high risk procedures to gain acceptance from their peers. Even the very best surgeons are often in a competitive environment, where their fellows grant them acclaim and acceptance based upon their ability to perform complicated procedures. Being able to meet the high performance standards set by others in their own field can drive them to minimize the risks of a procedure and even overstate their own skills when seeking a patient’s informed consent. When this occurs, the patient facing a high risk surgery is not always given a clear understanding of the realistic risks of complications.

It is indeed unfortunate that Lyn’s doctors were not more like Dr. Murray. He describes his approach “…of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly.” Lyn’s doctors spoke in clinical terms like ‘transmandibular approach’ and stated a risk level no higher than any other surgery. We did not know that there were other, less risky approaches that could be used to gain surgical access to the tumor. In surgical reviews of this procedure, this approach is defined as “provides the most complete exposure, but it is a morbid procedure and is associated with the risk of complications.” (Celtiklioglu, 2001). The term morbid is defined from its Lation roots, where morbi means to “to die” and is generally defined in medicine as meaning “Adverse effects caused by a medical treatment such as surgery.” (Morbidity, defined. 2013)

Doctor’s need to supply a patient with a complete view of the risks of the surgeries they seek consent to perform. They need to use words that patients can fully understand when explaining procedures and risks, and have an actual discussion of the risks of any surgery, not simply a passing statement of the likelihood of complications.  If any of the doctors on Lyn’s consultation team had shown us the stroke care floor at the rehab we ended up in and told her she could end up there, I am certain she would have taken those few months or maybe even years walking, talking and living instead.

Then there is the system itself. Once again, Dr. Murray sums it up. “In many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.”

All of this leads me to one inevitable conclusion, the one and only answer to the question that plagues me still.  Lyn didn’t say no to the surgery because she had truly no idea what could happen.

Back we go to that day a little over six years ago when they explained to Lyn what the surgery entailed while seeking her informed consent. Using clinical terms like ‘transmandibular approach’, barely discussing the elevated risks, and never once discussing the alternatives, Lyn was not told whether they would have the surgery themselves if faced with this diagnosis. I know we did not ask, but we did not know enough to be able to. They did know the risks and the high likelihood of failure and complications, and had an ethical obligation to tell Lyn what they knew. But they did not do so.

Consent was given that fateful day,
but it was not an informed one…
and there’s my answer.

I just wish I could accept it. I can understand now why Lyn made this choice, but that’s only because in hindsight I have knowledge that comes from study and wisdom that comes from experience. All I can do now is help others not to make the same mistakes, and if they do help them improve their outcome. As patients we are evolving into far more educated consumers. As more educated consumers, we are demanding transparency and the truth that comes along with it.

I am not alone in this belief. David Mayer, a doctor who speaks about the growing need for transparency, sums up this need quite succinctly. He writes, “[Our patients] want Transparency in outcomes. …They want Transparency in shared decision-making. Informed consent doesn’t cut it anymore. More and more patients want their caregivers to fully understand their values, preferences, needs and goals before any discussions on care options, risks, benefits and alternatives begin. They want information on the hospital and their physician’s experience related to the procedure they will undergo–more succinctly–how many similar procedures have we performed, and how well have we done? They want to know our infection and complication rates. And more and more patients also want to understand the costs related to different treatment options. … It is my opinion these new patient demands for transparency have been long overdue, are badly needed, and will help move us to a more cost-effective, higher quality, lower risk patient care model. It will be a new and better health care system, but history has taught us change will not come easily or quickly.”

He also instructs doctors on how to better reach out to their patients. “…When you enter a patient’s room, instead of standing at the foot or side of the bed (as I had done for so many years) pull up a chair, sit down and have a true conversation with them. Research has shown that patients perceive caregivers who did this to have spent twice as much time in the room with them, versus a comparison group of physicians, who actually spent the same amount of time with the patient, but stood at the foot of the bed while talking to them.”

So I say, on behalf of Lyn and all other patients who have given un-informed consent, to every doctor:

Sit next to us, and explain it to us
as if was you lying in this bed.

Tell us if you would have this surgery or treatment yourself whether we ask the question or not.

Remember we are desperate to survive our
illnesses and injuries and may not think to ask.

Above all else, tell us the truth.

---

Sources

About Chordoma. (2012). The Chordoma Foundation. http://www.chordomafoundation.org/chordoma/

Aiken, T. (2009). Legal and Ethical Issues in Health Occupations. St. Louis: Saunders Elsevier.

Celtiklioglu, Feridun. (2001). A new case of a branchial cyst of the parapharyngeal space. Ear, Nose and Throat Journal. June 1, 2001 http://www.thefreelibrary.com/A+new+case+of+a+branchial+cyst+of+the+parapharyngeal+space-a076877194

Dailey, Kate, 20120. “8 Things Your Doctor’s Not Telling You”. ABC News, April 20, 2012 http://abcnews.go.com/Health/Wellness/things-doctors-telling/story?id=16175754

Lezzoni, L., Rao, S., DesRoches, C, Vogeli, C and Campbell, G. (2012). Survey shows that at least some physicians are not always open or honest with patients. Health Affairs. February 2012, vol. 31 no. 2 pp.383-391. http://content.healthaffairs.org/content/31/2/383.abstract

Mayer, D. 2013. Sitting Down with Patients. Educate the Young. March 18, 2013. http://educatetheyoung.wordpress.com/category/patient-advocacy /

Meisel, A. and Schenker,Y. (2011). Informed Consent in Clinical Care: Practical Considerations in the Effort to Achieve Ethical Goals. Journal of the American Medical Association. AMA. 2011;305(11):1130-1131.

Morbidity, defined. A Wiki based open content dictionary. June 7, 2013.
http://en.wiktionary.org/wiki/morbidity

Murray, K. (2011). How Doctors Die: It’s Not Like the Rest of Us, But It Should Be. California HealhCare Foundation, Zocalo Public Square. http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/

On Being Malpatient

On Being Malpatient

by Gary M. Votour, MHCA

Medical malpractice is defined as a doctor’s failure to exercise the degree of care and skill that a physician or surgeon of the same medical specialty would use under similar circumstances. A while ago, an advocate and fellow blog author (Hari Khalsa, the owner of Healthcare Whisperer) used the term “malpatient” to describe me in an article entitled “When Doctors Sue Patients? Malpatient?”.

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At the time I was being sued for defamation by a neurosurgeon. Malpatience, as the author put it, is the opposite of malpractice. It is part of a growing trend where doctors are suing patients for the comments they make online about the quality of the care they or their loved ones receive.

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The defamation claim had arisen because I wrote and published a letter online directed at the neurosurgeon, where I stated my opinion that I felt there was a lack of compassion in her care of my wife after her discharge from the hospital where the surgery was performed. I had gone through the appropriate channels at the hospital in an attempt to speak directly to the neurosurgeon, and despite the willingness of the hospital to allow me to speak, I was met by the neurosurgeon’s refusal to meet with me. I felt, and still feel, that I was well within my rights to exercise my right to free speech. At no point did I lay any blame on the surgeon for strokes that had happened to my wife during the surgeries, nor did I even suggest that anyone considering that surgeon as a health care provider should reconsider their choice or seek a different surgeon or hospital. You can read more about the lawsuit and its settlement at the site of the original open letter to that doctor here at “I Forgive Her“.

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While I was earning my Masters Degree in Health Care Administration and now as a patient care advocate, I have learned a great deal about our health care system. I believe that one major problem is that when we are sick we give up our autonomy to doctors because we trust them to “do no harm”. We put our faith in a system that is based on our belief that doctors always have our best interests at heart. The reason I believe this is a significant issue is that although the vast majority of doctors do deserve this trust, some may not.

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You would think our current system of government oversight of medical professionals and peer review procedures between doctors would be enough to weed out the doctors who do not deserve our trust, but it isn’t. For example, Medicare keeps accurate records of doctors’ errors and the impact they have on patient outcomes, but they do not release that information to the public. State medical review boards rarely take a doctor’s credentials away for making mistakes, and when they do doctors are often able to simply move to another state and start over again. Even unfavorable peer reviews kept within a hospital between doctors often  results in nothing more than horizontal employer changes, with doctors moving from one hospital to the next and leaving their mistakes behind them each time.  Many doctors will also admit that peer review is heavily influenced by the potential of vengeful payback, where a doctor chastised by their peers in the medical community will wait for a chance to unjustly damage the reputation of those doing the chastising.

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Since the established system does not create enough accountability, what do we… the patients who pay for doctors mistakes, the ones who suffer from their lack of compassion, the ones who bear the often crippling burden of grief when we lose a loved one or watch them suffer… what do we have left to hold them accountable with? If we can not hold them accountable, how can we trust them?

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We have our protected speech, in the form of our online comments. Most importantly of all… we have our forgiveness. As long as we speak truthfully, and with the intent to improve our health care system, we should never fear being sued for being “malpatient”. We do not choose to become patients, or in my case the widowed husband of a patient. We should be allowed to express our truthful opinion in a way that may be helpful to the care providers themselves and their future possible patients, because having said what we need to say we can move on to forgive those who we believe have done wrong to us.

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Doctors can learn to either accept the blame they deserve, and ask for that forgiveness from us when they do not meet our expectations, or not. If they choose not to, they can find ways to offset the perceived damage done to their egos by our truthful voices by emphasizing other voices that praise them, or they can simply ignore us. The web is full of opinions… and we all know enough to recognize the voice of someone who is angry about a medical error or grieving the loss of a loved one. Just because that one voice appears in your Google search results does not make it defamatory. It does, however, raise the question of accountability… and a doctor who does not feel accountable likely does not deserve to be trusted.

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In our current health care system, medical errors are often met with a “deny and defend” response. To earn our trust, this needs to shift to a response of  “admit and apologize” to be worthy of our trust. To regain lost trust, doctors can seek our forgiveness by promising to learn from their mistakes. If that surgeon had reached out to me, a grieving husband, and sincerely apologized to me for not allowing me to speak to her three years ago, or even tried to explain her reasons for being so un-compassionate following my wife’s surgery, I would have removed the blog then. Better yet, if she had simply allowed me to speak to her from my place of grief, the blog would never have been written. What doctors should not be allowed to do is sue us for speaking up, so long as we speak truthfully. What doctors should not be allowed to do is make us revisit our grief and loss just to defend their egos. We have a right to set our own expectations of our doctors, in order to better trust them to care for us. We have a right to speak when we feel they have not lived up to that trust. We have a right, and a responsibility, to hold them accountable.

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If we set realistic expectations of our doctors, we can speak out when they do not meet them. If we feel wronged, we must speak out, with truthful voices, to hold them accountable so we can continue to trust them with our lives. When we do, they should not be able to wrongly threaten or harm us.

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Why?

Because two wrongs do not make a right.

Medical Truth And Dare

Medical Truth And Dare
by Gary M. Votour, MHCA

In his book Reality Isn’t What it Used to Be, Walter Truett Anderson relates a joke about truth. He writes “Three umpires were having a Coke after a baseball game. One says, “There’s balls and there’s strikes and I call ’em the way they are.” Another responds “There’s balls and there’s strikes and I call ’em the way I see ’em.” The third umpire says “There’s balls and there’s strikes and they ain’t nothin’ till I call ’em.” (Anderson, 2013). It is a funny joke, because it makes light of umpires and the power they have to control the outcome of a baseball game. Yet it also digs a little deeper at the something far more important… what happens when we let truth be decided for us by those we give our autonomy to.

To the doctors reading this blog…. What would you think if that joke was about doctors and how they disclose error to patients? I challenge you to change the context of the joke to your own profession, and play a little game with me called Truth And Dare. Let us start with a multiple choice question.

Which doctor are you?
A. The one who discloses all potentially harmful errors to patients (calls ’em the way they are)
B. The one who discloses errors he sees himself accountable for (calls ’em the way I see ’em)
C. The one who decides to disclose only errors he feels are actually errors (ain’t nothin’ till I call ’em)

More importantly, which doctor do you think your patients want you to be?
Before you answer consider these facts.

A 2010 New England Journal of Medicine study concluded that as many as 25 percent of all hospitalized patients will experience a preventable medical error of some kind, and 100,000 will die annually because of errors. If medical error were a disease, it would be the sixth-leading cause of death in the country. (Makary, 2012)

In the last 20 years, almost 10,000 malpractice payments were made due to Serious Reportable Errors (SREs). Half of these were because of medical instruments left in patients, and the other half were split evenly between wrong site and wrong patient surgeries. These payments alone paid $1.3 billion to those harmed by them, and surgeons make such mistakes more than 4,000 times. Almost all of these were preventable errors. (Ruch, 2013)

One-third doctors surveyed in 2009 by the journal Health Affairs did not “completely agree with disclosing serious medical errrors to patients”. More importantly, almost one-fifth of them felt it was “all right to mislead a patient regarding the truth”, and, amazingly, over one-tenth of them admitted to lying to a patient within the last year. (Lezzoni et al, 2012)

Now answer the question I asked, but change it slightly… Which of those three doctors would you give your autonomy to if you were sick? I would wager it would be the one who discloses all the errors they make, who apologizes when a mistake is made, and then promises to do everything possible to prevent that error in the future.

Is the doctor you would choose for yourself the doctor you are to your patients?

When people are ill, they give up their autonomy to doctors because we trust you to “do no harm”. Those three words are the basis for our faith that you will always have our best interests at heart. I believe that the vast majority of doctors act in light of that good faith, so why are there so many preventable errors that risk patient lives?

I think the answer is simple. A total lack of transparency in medicine has created a deficit of truth when it comes to errors. That is why we are witnessing a ever-increasing movement demanding accountability regarding medical errors. Dr. Sidney Dekker, the author of “Just Culture: Balancing Safety and Accountability” explains why patients need to feel our doctors hold themselves accountable to us.

“Calls for accountability themselves are, in essence, about trust. Accountability is fundamental to human relationships. If we cannot be asked to explain why we did what we did, then we somehow break the pact that all people are locked into. Being able to offer an account for our actions is the basis for a decent, open, functioning society.” (Dekker, 2007)

Harvard surgeon Dr. Lucian Leape has asked audiences of thousands of physicians to “raise your hand if you know of a physician you work with who should not be practicing because he or she is too dangerous.” Every hand goes up. (Makary, 2012). Would you raise your hand if asked that questions? Would any doctors who know you be thinking of you when they raise their hand? Are you certain of your answer?

So what is next? How can you become the doctor you would want to see if you were sick? How do you become the one who sets the standards that forces the change that restores the faith? It starts with truth, admitting to your patients every mistake you make that might threaten their health. Show them the extra measure of compassion that comes from your heart… go the extra mile for the ones who need you the most, the ones you have harmed by your errors.

Earn the trust that gives you their respect.

Studies of malpractise lawsuits have shown there is no typical plaintiff. People who sue doctors are not poor, not chronically ill, not single or married, not one race or another… those are stereotypes. Plaintiffs in malpractise lawsuits are usually angry because of an error, made by a doctor who likely tried to mislead them about the true cause of the error. Studies have also shown that telling the truth about errors reduces the chances of malpractise lawsuits, because most patients who sue are angry because they have been given the “deny and defend” response.

Be truthful, and show them how you will change whatever led to that error to prevent it from recurring. You will find that patients who are told the truth are far more likely to forgive you and your likelihood of being sued for malpractice will decrease.

So far I’ve talked to you about “truth”, but here is the “dare”: Commit to restoring patient faith in you. This starts by first learning to hold yourself accountable to the highest of standards, and then it extends to holding those you work with to your standards. The best part of being a truthful and caring physician is that you do not have to spend much on promoting yourself.

Your integrity, honesty and compassion will become your best advertisements.

References

Anderson, Walter Truett. 1992. Reality Isn’t What It Used to Be: Theatrical Politics, Ready-to-Wear Religion, Global Myths, Primitive Chic, and Other Wonders of the Postmodern World. 02/14/1992. Harper One.

Ruch, Rob, MHA, FACHE. 2013. “The epidemic of medical errors: Emerging expectations under health reform legislation.” 08/15/2013. http://www.protectconsumerjustice.org/the-epidemic-of-medical-errors.html

Lezzoni, L., Rao, S., DesRoches, C, Vogeli, C and Campbell, G. (2012). “Survey shows that at least some physicians are not always open or honest with patients.” Health Affairs. February 2012, vol. 31 no. 2 pp.383-391. http://content.healthaffairs.org/content/31/2/383.abstract

Dekker, Sidney. 2007. Just Culture: Balancing Safety and Accountability. 12/21/2007. Ashgate Publishing Company.

Makary, Marty. 2012. “Are Hospitals Less Safe Than We Think?” Newsweek Magazine. 09/27/2012. http://www.newsweek.com/are-hospitals-less-safe-we-think-64799

Medical Air-rogance

Medical Air-rogance
by Gary M. Votour, MHCA

In the middle of February, 2006, I had been living in the neurosurgical ICU for the last few weeks hoping for my wife, Lyn, to wake up from a coma following a massive stroke. The stroke was a result of a high risk surgery to remove a cancerous vertebrae from her neck. Her surgeon had told us that the stroke had occurred because Lyn had a congenital defect in her heart that had allowed a clot to reach her brain during the surgery. There was no evidence that this was the cause, and despite many tests in the coming weeks, there never was.

An expert neurosurgeon from another hospital had been flown in to consult on Lyn’s case. He had agreed with Lyn’s surgeon that the theory about her heart was valid and suggested some follow-up tests. While he was there he presented several of his cases to the surgical team of the hospital and, strangely, I had been invited to attend the presentation. I sat through a three hour presentation and watched with horror as he showed slides of his patients surgeries. I was the only person in the room not wearing a white coat. At the end he presented what he said was his most successful case.

He told us he couldn’t show pictures of the patient because the patient had not given consent, but that he had decided he could show what had been removed during the surgery. On screen was a female body, from the lower abdomen down, lying on a stainless steel table. The patient had a spinal cancer that was very advanced, and he had removed her hips and legs in order to save her life. He went on to tell the room how well she had done following the surgery, even recovering to the point where she was able to return to work as a secretary, although she had to sit in a bucket instead of a chair.

Then he explained that despite all he had done for her, she had let him down because years later she died from lung cancer. He said it was because she had so little respect for herself that she did not quit smoking. While many of the older doctors laughed along with him at that comment, most of the younger residents did not. I felt like I was in a room surrounded by humans who had fallen from God’s grace.

At the end of the presentation, I was waiting for the elevator when Lyn’s surgeon and the expert approached me. He said how much he respected me for staying by Lyn’s side, and reassured me that her surgeon had not caused the stroke. Then he asked me if I wanted to go to lunch with them. I turned away, and with a mouth tasting of bile, I said words I will forever remember… “No thank you. There would never be a restaurant large enough go hold both of your egos and still have room for me to sit in.” Foregoing the elevator, I walked down the nearby stairs, back to Lyn’s side.

Years later, I read what Max Lucado has written about air-rogance. He used the term to compare arrogance to climbing a mountain and breathing thin air.

“You can climb to high for your own good. It’s possible to ascend too far, stand to tall, and elevate too much. Linger too long at high altitudes, and two of your senses suffer. Your hearing dulls. It’s hard to hear when you are higher than they. Voices grow distant. Sentences seem muffled. And when you are up there, your eyesight dims. It’s hard to focus on people when you are so far above them. They appear so small. Little figures with no faces. You can hardly distinguish one from another. They all look alike. You don’t hear them. You don’t see them. You are above them.”

I realized that on that day I had briefly visited that mountain. What I saw there scared me so much that and I quickly climbed back down to reality. Many of the doctors in that room had been there so long they actually saw nothing wrong about their laughter regarding that patients death. They saw nothing disrespectful about that image of a discarded life, burned now into my memory. Worse than all of that, they acknowledged they felt the visiting surgeon had the right to be angry and disappointed that his patient had shown HIM such disrespect. Only the newer ones, hoping to find acceptance amongst their seniors but not fully acclimated to the thin air, remained silent.

I believes God hates human air-rogance. It must make him very sad when people, especially doctors that he has gifted with great life-saving skill, decide to live on that mountain. I believe God hates to see his children fall from His grace. The Bible has much to say about pride and arrogance, many of which we have all heard before: “When pride comes, then comes disgrace, but with humility comes wisdom…. Do not keep talking so proudly or let your mouth speak such arrogance, for the Lord is a God who knows, and by him deeds are weighed… Pride only breeds quarrels, but wisdom is found in those who take advice… The eyes of the arrogant man will be humbled and the pride of men brought low… Pride goes before destruction, a haughty spirit before a fall.”

The most relevant quote is in Obadiah 1:3 “The pride of your heart has deceived you, you who live in the clefts of the rocks and make your home on the heights, you who say to yourself, ‘Who can bring me down to the ground?’ ” Isn’t it amazing that words written so long ago continue to have such relevant meaning? “The pride of your heart” is the arrogance that comes from unbalanced egotism. I say “unbalanced” because egotism is not necessarily a terrible thing- it is much like self-confidence, and it can come from a sense of self-pride that is well deserved amongst those who have great skills bestowed upon them. Yet egotism must be balanced by great compassion and humility, for to be uncaring of those who have lifted you up to that mountain is to risk a great fall from God’s grace.

The cure to medical air-rogance is humility. C.S. Lewis once wrote “Humility is not thinking less of yourself, it’s thinking of yourself less.” It means you think of others more than yourself… and is that not why most of you chose a career in medicine in the first place? “Do nothing from rivalry or conceit, but in humility count others more significant than yourselves.” (Philippians 2:3-4)

To those on that mountain, please… Come back down.

The thin air of air-rogance will not sustain you.
You can be forgiven you for being there, but only if you come back down.
When you find yourself breathing that thin air, look for the stairs.

 

Failure Fixation

We hear a lot of buzz in the media about the implementation of the Affordable Care Act (ACA) but is it meaningful journalism? Why are they so fixated on 4 million insured people who may lose their current and mostly sub-standard health insurance policies and ignoring the fact that 30 million people who have never had health insurance will finally be able to buy health insurance? The news is focused on reporting the ACA’s failings, but little is said about it’s successes.  Despite the initial problems with the web site designed to help people find health coverage, it is working and continued efforts to fix the problem are having an effect. After the ACA’s first month, over 100,000 people had enrolled in health care plans online. Eighty percent of them did so using the State exchanges established by the 14 states who shouldered their fair share of this techno-burden and worked with, not against, the Federal government in the ACA rollout. (Logiurato, 2013)

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The 4 million insured have had the ability to purchase insurance all along. Now, due to circumstances beyond their control, including the greed of insurance companies, they could potentially lose their current policy. But they still have the option to get another plan… a better plan, and in most cases a cheaper plan. Yet the mainstream media still calls this a failure, pointing out the shortcomings under the guise of critical analysis. That’s not exactly the fair and unbiased view that I expect from journalism.

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The 30 million people that have never had coverage would not be able to get any health insurance coverage if it were not for the Affordable Care Act. And we, as a society, have been paying for most of them all along, through higher premiums and taxes. They are the people we have not been paying for, ones we allowed to die from terminal illnesses that resulted in cancelled policies and from pre-existing conditions that meant they could not get policies to begin with.

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For most of those 30 million people, the coverage they get will not only be better, it will be cheaper.  “Two-thirds of the 30 million Americans… will be eligible for individual coverage next year are uninsured today, whether because they can’t afford it now or because they’re barred by pre-existing condition limitations, which will no longer be legal. And more than three-quarters will be eligible for subsidies that will cut their premium costs and even co-pays and deductibles substantially.”  (Hiltzik, 2013)

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The ACA is not something we should label with a word like “Failure” just to get a reaction, unless the word is “Love”. As in Love for each other, as the Lord has commanded us to do. “And they ask “When did we see You sick… and come to You?’ The King will answer and say to them, ‘Truly I say to you, to the extent that you did it to one of these brothers of Mine, even the least of them, you did it to Me.’ ” – Matthew 25:40

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References:

Hiltizik, Michael. “The Obamacare success stories you haven’t been hearing about.” The LA Times, November 25, 2013. http://www.latimes.com/business/hiltzik/la-fi-mh-obamacare-success-20131125,0,1801769.story#ixzz2lmpDbNVt

Logiurato, Brett. “Just 100,000 Have Selected Health Care Plans Under Obamacare.” Business Insider, November 13, 2013. http://www.businessinsider.com/obamacare-enrollment-numbers-healthcare-gov-october-affordable-care-act-aca-2013-11

Time to Stop Counting

Time to Stop Counting
by Gary M. Votour, MHCA

In a few days it will be the five year mark since she died, and I have decided I need to stop counting.

October 13, 2008, 8:35 am: I had sat by Lyn’s side all night as her breathing became slower and slower, and now there was only a breath or two every minute. Her hand had grown cold and lifeless as I held it, and hours ago I had let it go. I had not slept in three days, fearful I would not be there when she left. This was the final moments of my wife of nearly 30 years. She took that last breath.

I became widowed.

The last three years had been spent watching her struggle and suffer from the effects of a surgical stroke that had left her in agony, both physically and mentally. I had washed and fed her, cleaned her wounds, and tried to bring a sense of normalcy back to her life. I could not change how much she had lost, I could not end her pain. Two weeks before she had decided to stop eating and drinking, and told me it was her time to go. She didn’t give me a choice but to let her go, and I was not ready to give her up.

But I did.

It took me a long time to accept that she was gone. During the months following her death I cleaned out our house, and a part of me kept waiting for her to come home. I made my life a dream from which I wanted to awake and find this reality was just a nightmare, and that she would be lying next to me, snoring as usual. The denial was so pervasive that I became suicidally depressed. I self medicated in a style that would make a heroin junkie bow down and worship my ability to dull my life to the very point of exsanguination.

Then I woke up.

I was wasted one night, drinking all day and eating ativan like they were pez. I had a loaded 25 caliber berretta in my hand, and kept putting it to my temple and trying to get my finger to pull the trigger. My life hung on my ability to move that little piece of metal one-eighth of an inch. I downed a couple more shots of skyy, took a few deep breathes and told myself if I could do this, I could be with Lyn again. I raised the gun, feeling the barrel against my forehead and closed my eyes. As my finger tightened, I heard a voice. Calmly and quietly, someone standing behind me in my empty house said “If you do that, Lyn is going to be very pissed that you showed up here with a hole in your head.”

I lowered the gun.

Stairway to Heaven:
Lyn’s ashes are atop this hill in Barre

God spoke to me that night, and I began to crawl back away from the precipice I had been ready to jump from. Over the next few months, I stood back up and began to walk. I moved forward through my grief, slowly at first. I enrolled in school, and in two years I had a masters degree in health care. This summer I was even baptized again in the ocean, born again in the knowledge that God cares for me. I became an advocate, learning how to use the experiences Lyn and I had shared to help others. I now help others move through their grief, helping heal their brokenness. I write about the need for improvement in health care, challenging a broken system that has abandoned the spiritual needs of patients to find once more the compassion that originally founded it.

I am not done.

Now I am here, five years since she died. I keep looking back, letting the pain of my loss keep me from moving forward. C.S. Lewis wrote, “In our adversity, God shouts to us,” and again, God is speaking to me. He is telling me that he wants followers, not fans. He is telling me to give that pain to him, to let it go. He is telling me that I can put that pain behind me and fix my eyes firmly on the road ahead He has made for me, the one that follows Him. He is telling me that I can not see that path if I keep looking back with eyes clouded by tears of grief, and I am listening. My life is His, for he owns what He has saved. On Sunday, October 13th, 2013 at 8:35 am, I will stop counting the days, months and years since Lyn died. I am becoming advocate at large in a world that has no definition for what I truly am. Nor do I yet. I do know what I am not.

I am Gary Votour,
and I am not a fan.

Keisha’s Kairos Moment

Keisha’s Kairos Moment
By Gary M. Votour, MHCA

A kairos moment in health care… can you name one from your life?

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The ancient Greeks had two words for what we call time. One was chronos, which referred to the linear progression of time itself. Chronos is the one day follows another method we measure the passage of time with, as in “yesterday, today and tomorrow”. Whenever we measure time in seconds, minutes, hours, days, weeks, years, decades or centuries, we are speaking of chronos time, or as we more commonly call it chronological time.

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The Greeks also had another word used to define time, kairos. This unique word is lost in our language, but its meaning is still with us. Kairos refers to specific moment (or moments) of time where we make a decision based on possibilities presented to us in that very moment. What makes these moments in time different than chronos time is their potential. A kairos moment has the potential to change the future based on the decision the person experiencing the moment makes. Obviously, in some ways life is filled with reflexive kairos-like moments. We couldn’t walk down the stairs without falling down them if we didn’t decide to move our feet forward and down with each step. Kairos moments are somehow different, moments where we make decisions we should not make casually or based on reflex.

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A kairos moment can be the second when a  someone decides to say “I do” to a marriage proposal, or it can be the moment you and your spouse decide you want to have children. It can even be the moment you decide to give a homeless person the extra ten dollars you found in your wallet this week. A true kairos moment is when God gives us a unique opportunity to make a mindful decision to make a difference in our own or someone else’s life. A kairos moment in health care is no different, for both patients and providers alike.

Putting aside his own feeling that he has failed to save a life, a doctor decides to advise a terminally ill patient that the treatment they are seeking may prolong their life but will likely have an adverse impact on the quality of the time they have left. He recommends they consider hospice instead of treatment. A nurse chooses to speak up on behalf of a patient in her care regarding the ethics of a doctor, knowing that although it will likely improve her patient’s outcome she will probably have to face repercussions from the respect she is given professionally by that doctor and her own peers in the future. A therapist decides to visit a discharged patient at their home to give them moral support in their recovery, knowing that it is against her employer’s policy to do so and risks punitive action from her employer by doing so.

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These are all examples of kairos moments in health care, where health care providers make a decision when they feel God has given them the opportunity to make a decision that shapes lives, a chance to express their compassion and love for the people they care for, regardless of the personal consequences. I have personally witnessed examples of all of these decisions, and can testify to the power they had to make a difference in the lives of others.

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It is not just providers that are given these opportunities to make life altering choices. Patients, family members and friends get these wonderfully unique opportunities given to them when someone they or someone they love is recovering from an illness or injury or even dying from a terminal disease. Visiting in the hospital, offering a meal, offering  companionship and even consciously praying for someone all have the potential to be kairos moments. Sometimes it goes even deeper, and we find ourselves challenged by God to make the right ethical or moral choice.

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In 2006, I was living in the ICU of a major surgical hospital in Boston. My wife, Lyn, was struggling to survive a surgical stroke. We were in that ICU together for weeks on end, and I met other family members who were struggling as well.  At my worst one day, when I was filled with self pity and feeling hopeless that we could possibly survive the ordeal, I met a young woman I will call Keisha and her parents. I’ll never forget them. Once I tell you about them, I doubt you will either.

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Keisha was 17. I met her parents in the waiting rooms one day, and they let me visit her whenever I wanted. She was an awesome young lady that I will never forget. She had been having tumors in her brain sue to a rare form of cancer all of her life. Over a dozen surgeries over a ten year period removing tumors had been performed successfully. She was back this time because after a two year remission, her latest scans showed three new ones. Keisha and her parents had decided to tempt fate one last time.

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I first met her a week before her last surgery, so I did not get to know her very well. But I will never forget the first time we met. She was sitting in her bed, her scarred head shaved and prepped. Just sitting looking out the window.  I told her about Lyn, who was three ‘rooms’ away. I asked her if she’d like some company, and she said, “Sure. Pull up a chair”. I asked her what we were looking at. It was snowing outside and we were up on the 12th floor, so all you really could see was the snow swirling around outside the window.  She told me, “Outside.. we’re just watching outside. I need to know it’s still there waiting for me.”

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I sat there, quietly looking outside with her for an hour or so. We didn’t say much. Then she started to cry. I reached over and held her hand, and she said “My parents love me so much… but to be honest with you… I hope I don’t make it through this again. I hate watching them suffer along with me.”

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It was an epiphany for me. My eyes opened through all the pain I felt and saw how hard it must be for anyone to actually be so accepting of their own death. To be so selfless and loving that the only reason a fighter – a survivor like her- the only reason she would give up would be her love of others.

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I remember holding her hand for hours over the next few days, rather it was her holding mine. I would quietly disappear back to Lyn’s side when her parents were around. After they would visit the three of us would get a bite to eat. They told me stories of their daughter growing up, how strong she was, and how they knew she would survive this and that eventually she would be OK, and I knew Keisha was right. She couldn’t live up to their expectations any longer.

I said goodbye to Keisha after her parents left in preop before her last surgery. We held hands as the meds started to kick in. As she fell asleep, she looked at me and said, “Would you tell them I am sorry?” I promised I would.

She did not survive the surgery. She passed on in recovery. I was with her parents when it happened. I sat and cried with her parents, wondering how I could possibly tell them what she had asked. I knew I would probably never see them again after that day.  Then her mother said “She was always struggling and trying so hard… I knew she did this for us. We should have never asked this of her again.” Through my own tears, I looked at her and said “She wanted you to know she was sorry… she asked me to tell you.” Her dad said, “We know. We were both outside when she told you. It was the last thing she said…”

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Keisha and her parents had created one of the most notable kairos moments in my life. I learned that day that the things we promise to do for those who are dying are not as hard as they may seem. It is an honor and a privilege to help someone at the moment of their passing.  I am honored to have known Keisha. My memory of her and her softly spoken words helped me get through what came in the next few years.

I hope it helps you someday.
Keisha would like that.
I share her story to honor her memory.

Do No Harm, or at Least Make No Profit From It When You Do.

Do No Harm, or at Least Make No Profit From It When You Do.

by Gary M. Votour, MHCA

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There is a really big reason why most Health Care Organizations (HCOs) do not support the changes to our health care system being driven by the Affordable Care Act… and that is that it will cut into their profits. It is time for us, as their consumers, to understand why so we can demand change. Health care in the United States is big business. As costs have been driven upward for the last fifty years, so have profits. Contrary to what many politicians like to say, the health care industry in the United States is not a free market,an economic system in which prices and wages are determined by unrestricted competition between businesses, without government regulation or fear of monopolies. In reality, the health care industry in our country has become a seller’s market,a system in which goods and services are scarce and prices relatively high. (Davis, 2013)

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I am not referring to the occasional emergency room visit for a broken arm or the trip to your primary care provider for antibiotics during a relatively mild illness. In major urban and suburban areas, choices exist for those with more routine medical issues. The proliferation of “Doc in a Box” health care services, which are often franchised out like fast food restaurants, are options for those with insurance or who can self pay, and add value to their service by allowing the convenience of drop-in appointments with little or no waiting time. It is when you or someone in your life is hit with a major illness or a complicated life threatening condition that your options become narrowed to the nearby specialized care providers, and that’s where free market competition ends. When it comes to specialized care it is a seller’s market, and what they are selling for profit is life itself.

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It is all about the profit. We have “for-profit” hospitals and “non-profit” hospitals in this country. Study after study shows hospitals whose decisions are controlled by shareholders seeking profit do not offer services that do not make as much money, which in itself is hardly surprising. Instead, they specialize into the areas where the maximum profit from investment can be made. Hospitals which do not make a profit are more likely to offer the services most people need, like emergency rooms, preventative programs and home care based services. In fact, studies have shown that patient mortality rates increase when nonprofit hospitals switched to become profit-making, and their staff levels declined. Many politicians, sponsored by health care organizations making profit, argue that we need less government involvement, less regulation and more competition. American consumers hear arguments that more privatization and less governmental control will lead to lower costs and higher quality when it comes to the medical care we need. Unfortunately, a lot of people do not understand enough about the economy and what drives it to realize that these arguments are self-serving and spurious. (Porter, 2013)

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The reality is that HCOs make money providing treatment to patients, and there is money to be made whether the problem being treated is from an illness or from a complication cause by an error. This problem is even more of a concern when the patient has private insurance. A recent study published in the Journal of the American Medical Association (JAMA) found that when patients with private insurance had complications following surgery, hospitals made nearly $40,000 more profit than when there were no complications. For patients insured by Medicare, that profit is reduced to less than $1,800 for the same surgery with the same complications. The profit difference is because Medicare does not reimburse for overhead and fixed costs, it only pays for the items and services directly involved in a patient’s care. Atul Gawande, one of the studies’ co-authors and a Professor of Surgery at Harvard Medical School, said ” The magnitude of the numbers was eye-popping… That’s an indication of the level of perversity here. Having a complication was profitable, and fighting complications was highly unprofitable.”(Shute, 2013)

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The JAMA study indicates that this the case in 90% of the hospitals in this country. The reason is that there is no financial incentive to hospitals to reduce errors. The Affordable Care Act includes changes that will make changes to the system, including reductions in payments for complication related care. A major step forward are changes to Medicare that include bundled payments, where the hospital is paid the same amount for a procedure, with or without complications. They still have to provide the care, they simply will not be reimbursed for it. Even this solution is not going to solve the problem, for hospitals will simply shift the uncharged costs to their patients with private insurance. What needs to happen is reform system wide, an adoption of a consumer driven standard that takes control of the system that is running out of control. Mark Lester, executive vice President of Texas Health Resources, was another of the JAMA studies’ co-authors. “It’s just more evidence that payment reform is key to health care reform. We’ve unmasked some hidden perverse incentives that are just part of our system…. We’re all moving toward payment reform. It’s happening incrementally, because it’s very complex.” he said. (Shute, 2013)

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I am not trying to build a case against a health care system based on profitability. In fact, profit is essential in health care as it can be used to drive innovation, research and ultimately improved levels of care.  If there was no profitability in health care, there would be no doctors, no nurses and no hospitals. In order for them to defend their right to make a decent living, there must be an ethical decision about when and how that profit is made. Amesh Adja summarized this belief in his recent opposing editorial in Forbes magazine. He wrote, “For those who want to preserve and extend the advances in the standard of living that have been made possible by innovations in medicine, the moral defense of profit–against those who view profit as an evil to be banished–is a crucial and necessary step.” His explanation is thorough and thought provoking. “…physicians are often considered by the public to be part of an exalted class who labor tirelessly with no thought other than serving their fellow man and are, for the most part, paid well for their sacrifice. To ascribe profit-seeking to a profession that is heralded as an embodiment of self-sacrifice would offend the sensibilities of the public and many physicians”, he wrote. He is correct, and that is where the thinking needs to change. Consumers and providers both need to acknowledge that health care is built around the concept of profitability. Once we do that, we can begin to decide where it is morally acceptable to  make that profit, and how much profit is enough. I am proposing that we declare complications that are caused by errors are not ethically profitable. (Adja, 2013)

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Can these changes be made without reducing the overall profitability of the health care system?
Of course they can, but not without the cooperation of HCOs.

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At The Brigham and Women’s Hospital (The Brigham) in Boston, MA an innovative approach to reducing errors has been introduced and we should all be watching how this unfolds. Since 2011, a monthly newsletter to its 16,000 employees called “Safety Matters” has included anonymous yet detailed accounts of patient errors and descriptions of the steps they have taken to remedy them. By providing the narrative details of specific cases where errors have been made, the leadership of The Brigham are trying to make the steps needed to solve this problem. Dr. Elizabeth Nabel, The Brigham’s chief executive has said that one of her goals is to create a more open culture around medical errors, in which staff can report them and seek help without shame. She even describes the occasion when, years ago at a different hospital, she was repairing a patient’s heart valve when she accidentally punctured a ventricle of the heart with a wire. This caused bleeding and required the patient to undergo surgery.  She did disclose the error to the patient but felt she had no one else she could discuss it with besides her husband. She said, “I felt very insecure and my confidence was shaken… Think about how much easier it would have been if I could have talked to my colleagues rather than living in fear I would get stabbed in the back because I made this mistake.”  (Kowalczyk, 2013)

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Janet Barnes, The Brigham’s executive director of compliance, was at first hesitant about the project.  Concerned that disclosing errors in a public forum could give lawyers grounds for lawsuits, her staff review each newsletter to make sure the event is related factually and without editorializing. “There’s definitely a balance,’’ she said. “We want people to know we are working to improve. But you want them to come here and feel safe and not come in the door and worry.’’ Their goal is to tell of the problems they encounter in a more memorable way than a simple statistical report, so that the staff retain a greater understanding of the importance of the changes being introduced as a result. (Kowalczyk, 2013).

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Physicians take an oath, to do no harm. At it core is the belief that every patient has a right to complete autonomy, and that it is unethical for a physician to withhold information from a patient concerning any aspects of their condition or the potential positive or negative outcomes of a recommended treatment. This is in direct opposition to the traditional paternalistic views held by physicians in the past. Practitioners of medicine long considered themselves as the the givers of life saving treatment and patients as the recipients. This has its origins in the core of values defined by Hippocrates that relied on the fact that physicians had more information in the form of advanced knowledge about medicine than patients. This perspective gave them the right to make the decisions on the behalf of their less knowledgeable patients. His original precepts of medicine, which included ‘do no harm’, established the strongly paternalistic view that a patient had no need to know their current diagnosis. It was a cultural belief, not far removed from religion. Hippocrates lived in the 5th century BC, and his version of the physicians oath guided medicine (with many modifications designed to keep it in contemporary terms) until this century, when a sense of ethics began to change medicine and challenge the paternalistic physician view. (Garrett, 2010)

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In 1964, Louis Lasagna (while serving as the Academic Dean of the School of Medicine at Tufts University) wrote a new oath for doctors that is used in many medical schools today. Lasgana’s oath, in part, states “I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug. I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery. I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death.  If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.  I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure. I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.” (Tyson, 2001)

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Prevention is preferable to cure.  As medicine has become more and more complex, the quality of the health care services we receive as patients continues to increase. Yet with that increased complexity inevitably comes errors. The standard that we, as consumers of a very profitable segment of our economy, must insist on is a standard of excellence based on transparency. Errors must be examined to prevent them from recurring. To the 90% of hospitals still operating under the concept of profitability above all else, I challenge you… adapt to the new standards. Embrace changes being mandated regarding errors. Do not delay, do not hesitate, for your patients require it now. Our lives are the ones impacted by errors you choose to ignore and repeat.

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The Oath above contains strong words that I believe sum up the ethical principles of most doctors, and they bear repeating. “I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.” It is not just the oath a doctor swears to uphold, it is the ethical principle we insist that every HCO must uphold. We want them all to be like The Brigham, and embrace the changes that are coming. We are fine with them making a profit, they deserve to do so in exchange for the services they provide and the financial risks they take in doing so. At the same time, we are becoming more educated about the choices they make in pursuing that profit, and we can not and do not have to tolerate profit from errors.

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Do no harm, or at least make no profit from it when you do.

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Sources:

Adlja, Amesh. 2012. “Why are profits in the healthcare sector so demonized?” Forbes OP/ED, November 01, 2012

http://www.forbes.com/sites/realspin/2012/11/01/why-are-profits-in-the-healthcare-sector-so-demonized/

Davis, Paula. 2013. “Learn about obscene profits of health care industry.” Standard Examiner. March 06, 2013.

http://www.standard.net/stories/2013/03/06/learn-about-obscene-profits-health-care-industry

Garrett, B. (2010). Health Care Ethics Principles and Problems.  5th  Ed. Boston, MA: Prentice Hall.

Kowalczyk, Liz. 2013. “Brigham and Women’s airing medical mistakes:Hospital reports errors to staff in drive for improvement”. The Boston Globe. April 09, 2013.

http://www.bostonglobe.com/lifestyle/health-wellness/2013/04/09/brigham-and-women-publishes-stories-medical-errors-focus-staff-attention-solutions/heFVdgGnLc2O9QqL1eiMnN/story.html

Porter, Eduardo. 2013. “Health Care and Profits, a Poor Mix.” New York Times, January 08, 2013

http://www.nytimes.com/2013/01/09/business/health-care-and-pursuit-of-profit-make-a-poor-mix.html?pagewanted=all&_r=0

Shute, Nancy. 2013. “Quality Conundrum: Complications Boost Hospital Profits.” National Public Radio, April 16, 2013.

http://www.npr.org/blogs/health/2013/04/16/177481476/quality-conundrum-complications-boost-hospital-profits

Tyson, P. 2001. The Hippocratic Oath Today. NOVA, PBS. March 27, 2001.

http://www.pbs.org/wgbh/nova/body/hippocratic-oath-today.html#modern