A recommendation to minimize costs backfires

The following anecdote is by Alexis Ball, the daughter of a patient from New Mexico. Her story was originally submitted to the 2011 Costs of Care Essay Contest.

My mom passed away last December to Stage V breast cancer metastasized to her liver. During this battle she developed ascites (an accumulation of fluid in the peritoneal cavity) as her liver failure progressed. This accumulation of fluid was not only extremely uncomfortable but painful as well. In an attempt to find symptomatic relief for the last months of my mom’s life, the oncologist presented us two options: we could come in to clinic weekly and be tapped to have the fluid drained or we could implement a permanent drain in her peritoneal space.

Per the doctor’s advice, we opted for the latter option. The doctor recommended this option because my mom was on blood thinners and this plan obviated the need to continually reverse her Coumadin dose. Thus this equated to less time for her in the clinic and was less expensive for the hospital and our family… or so we all thought.

Our insurance company approved the top of the line specialty drain for this procedure. After the procedure, the hospital provided us with the first batch of drainage supplies. My dad and I learned how to properly drain my mother and change her dressings. We got into a routine of draining every night before bed. There was a dramatic improvement in my mother’s quality of life due to the release of extra of pressure in her abdomen. All was copasetic until it came time to reorder our supplies,

“Hello Ms. Ball! I understand that you are reordering the drainage and dressing kits , unfortunately they are out of plan for your insurance”

We were dumbfounded. How could the insurance cover a system in which they did not support the supplies?

“These are non durable goods and not covered. The cost of the kit will be 600 hundred dollars monthly with a deductible of 750 for the first month”

Our jaws dropped.

Due to my mother’s illness she was no longer working and was waiting to receive disability benefits. Six hundred dollars a month was more than a third of her entire income on disability. Our oncologist was horrified to learn that the nondurable goods associated with the drain were not covered. He had no idea that this was the case. Our doctor had recommended this plan to not only reduce chances of infection but also minimize costs for our family. This knowledge would have altered his recommendation of treatment plan for our family.

Yet it gets better, the drainage system leaked, requiring dressing changes two to three times a day. These extra dressing changes increased our out of pocket expenses by two fold. The cost of maintaining this system was extremely prohibitive. We could either afford to pay our bills or pay for the supplies of this drainage system. Thus, we resorted to using non sterile dressings instead of the prescribed dressings. Our replacement dressings included sanitary pads, urinary pads, saran wrap, and the occasional paper towel. Although these means were clever and much more cost friendly for us, they greatly increased my mom’s chances of a peritoneal infection. A peritoneal infection would have resulted in a hospital stay and a much more costly bill for both our family and the insurance company than the sterile dressings my mom needed. My mom always joked that the solution to our financial struggles with medical care costs was for her to just hurry up and die… which much to a young daughter’s dismay was the heartbreaking truth of our situation.

A Question of Worth

Dr. Eijean Wu is a gynecologic oncology fellow at the University of Southern California Medical Center, and was a finalist in the 2011 Costs of Care Essay Contest.

As an OB/GYN resident, I tried to reconcile quality and cost of care every day. This is the story of one patient who cost the system a lot of money, but I don’t know to this day if it was too much.

Cheryl (name changed) had HIV, a history of cervical cancer, and 3 kids. At age 35, she had been cured from cervical cancer after surgery and radiation therapy. However, due to treatment-related fistulas, she had been in and out of the hospital for most of the year. I was taking call for the gynecology service the last time her family brought her in, delirious and with black, sticky stool oozing from an opening in her unhealed abdominal incision. She needed wound care and close monitoring in the intensive care unit (ICU). I paged the ICU team.

The ICU fellow came promptly, and briskly refused to accept her to his unit. “She is a poor use of scarce resources,” he stated matter-of-factly. “Further treatment is futile.” Without missing a beat, I looked him in the eye and countered, “What if this was your sister? Your mom?” He relented begrudgingly, but added, “This is why health care is so expensive in this country. You surgeons don’t know when to let go.”

Thanking him for accepting my patient, I went back to Cheryl to clean up her wound. She grabbed my arm and whispered, "Dr. Wu, I'm scared. Don't leave." I assured her that we would do everything we could to get her back to her kids. Afterall, her cancer was gone and her HIV viral load was undetectable. We couldn’t quit now. Two days later, Cheryl was leaving her room to sneak a cigarette. One day after that, she was found dead in her hospital bed by a nurse checking vital signs. Cheryl had quietly passed away in her sleep from a massive gastrointestinal bleed.

Had I gotten too attached and lost sight of the big picture, as the ICU fellow purported? Who deserved that last ICU bed that night? Someone who would have only cost taxpayers $10,000, $100,000, or $1,000,000 during her stay? Would it have mattered to the hypothetical taxpayer that Cheryl had lost her professional job and employer-based insurance due to her long treatment, then lost her home, then spent down her income and thus qualified for Medicaid? Was it my responsibility to be considering resource allocation while my patient was critically ill? Besides, the ICU fellow abandoned his cost-conscious argument quite quickly at the mere suggestion that he would do otherwise for his family member.

I had worked in the private, public, and not-for-profit sectors prior to going to medical school. I had pondered the roles of corporations, governments, and single-issue foundations in shaping our health care system. I knew about the slippery politics, limited data, legal pressures, and economic realities. Yet, time and time again when my patients come into the emergency room or are lying on the operating table or get better or worse after some intervention, I struggle to see the forest for the trees.

On some level, I don’t think my patients want me to be thinking about the sustainability of the health care system when I’m counseling them about their options. They want to know that I am their unwavering advocate. Their interests are my top priority in that fiduciary relationship. If I suggested more or less, it would only be watching out for them, not for the general public.

Yet, my experience tells me that providers, the people who oversee these cherished doctor-patient interactions, must play a principal role in revamping this overwrought and overpriced health care structure that does not produce the quality and safety outcomes any moral society would demand. Doctors wrestle with the nuances and inefficiencies of the institution every day. Medicine is not mathematics, but it is prudent to inject a measure of cost-awareness into our diagnostic work-ups, treatment algorithms and clinical trials. It may seem distasteful to knowingly put a monetary value on life, but we already do that calculation with each clinical decision we make. Higher quality can be affordable and accessible.

So for now, I continue to navigate that difficult space between being a good doctor and a conscientious citizen. I will see many more patients like Cheryl in my career. They will always be pushing me to do better.

Cost-awareness anecdote: Ultimate Sacrifice

The following anecdote is from Dr. John Maa, Assistant Professor of Surgery at the University of California, San Francisco

An estimated 60% of American bankruptcies result from overwhelming medical costs. My uncle’s tale illuminates the dual tragedy of suffering catastrophic illness and being uninsured.

The 2008 recession claimed my uncle’s job, health benefits, and assets, except for a small inheritance. By 2009 he found work (but not health coverage) as a consultant.

One day he noticed that his eyes were yellow. He emailed a photograph, and I immediately recognized jaundice. I calmed him by suggesting benign causes such as hepatitis, gallstones, or liver cirrhosis. But I secretly dreaded a liver or pancreas cancer, given his recent weight loss and itching.

Laboratory and x‐ray tests, which he charged to his credit card, all suggested cancer. His doctor in New Jersey indicated urgent surgery was necessary. An appointment was unavailable for weeks at the county hospital, and private surgeons wouldn’t see him without a cash deposit. Time was ticking. Cure was already unlikely, and delays were allowing the tumor to grow. He decided to travel to the West Coast to expedite surgery.

My uncle arrived around midnight, glowing yellow; he had worn sunglasses to avoid frightening other airline passengers. He was immediately admitted to undergo a procedure to identify the site of blockage and insert a plastic stent to drain bile externally. While awaiting the outcome, I had a premonition that the worst was yet to come. The doctors brought dreadful news that a massive tumor, too large to remove surgically, lay centrally in the liver. The remote possibility existed of a benign condition masquerading as cancer. The aggressive option was upfront chemotherapy and radiation to shrink the tumor, for possible surgery afterwards. But several surgeons deemed the case hopeless, and estimated my uncle had only 6 months to live. They recommended hospice, and a more comfortable internal metal stent. My family chose not to share these findings with my uncle until he recovered from anesthesia.

The crushing blows continued. Within 36 hours, my uncle lapsed into a coma from kidney failure induced by bile toxins. Knowing the costs, we refused transfer to the ICU. Dialysis was necessary, but the nephrologists regarded the situation futile and refused treatment, comforting us that dying from kidney failure was painless. Miraculously, he rallied. Seeing improvement, the nephrologists started dialysis. We could finally share with my uncle the difficult choices ahead.

He responded “It’s hopeless. Why risk money that could provide my daughters’ education?” He asked to be made “do not resuscitate”, and declined surgery. Two weeks of recuperation made transfer to less expensive skilled nursing care possible, but here I learned it takes money to save money. Ambulance transport was mandatory, costing $1700. As I read the dispatcher my credit card information, I wondered if I could have driven him myself.

In the following days, we tried everything to minimize costs. My uncle had a fever, but refused evaluation in the ER, and was treated with blankets and oral antibiotics. His fever broke, as did the stitches on his stent, which I re‐sutured at the bedside.

In the end, my uncle made the ultimate sacrifice for his daughters by rationing his care. Death came swiftly, only 72 days after he became jaundiced. He never received metal stents, or saw New Jersey again.

His final medical bills totaled over $250,000. Charity care was denied, and MediCal unavailable since he was from out of state. After receiving a 20% discount for paying in a lump sum and in cash, we negotiated a final 40% discount.

The costs of his care can be translated as follows. Each session of dialysis equaled a month of private college tuition. Each day’s blood work would have provided a year of textbooks. The daily hospital room charge would pay for a half‐year in the dormitory. The anesthesia fee would have purchased a full year’s meal plan.

My uncle’s cause of death remains unknown. Weeks into treatment, his tumor markers came back normal. Surgery might have been curative, or confirmed a hopeless situation. The cost to know with certainty would have consumed his inheritance. The World Health Organization recognizes this universal tragedy worldwide: “The poor are treated with less respect and given less choice of providers. In trying to buy health from their own pockets, they pay and become poorer.”

Whenever someone faults the medical system for the epidemic of bankruptcies, I ask instead: My uncle was 59, and for decades had contributed to the system by paying health insurance premiums while employed. Did the system treat him fairly when he needed care?

Caveats to “letting go”

A recent NYTimes article comes at the heels of Dr. Gawande's compelling essay on end of life care. The matter at hand is that legislators are realizing the economic value of palliative care options for terminally ill patients. Recently, Gov. David A. Paterson signed into law a bill — the New York Palliative Care Information Act — requiring physicians who treat patients with a terminal illness to have frank discussions about prognosis and options for end-of-life care, including aggressive pain management and hospice care as well as the possibilities for further life-sustaining treatment. A similar law in California seeks to overcome physician resistance to talking openly with terminally ill patients about end of life care options. As part of the original federal healthcare overhaul, a similar provision would have reimbursed doctors for the time it takes to have such conversations – which however did not make through it given the traction gained by "death panels". Overall, even commercial insurers have financial incentive to steer patients with a poor prognosis away from costly health care services.

The point is that there is a cost advantage, in addition to the better quality of life argument. Several studies reveal that palliative care and hospice services can reduce costs of can-do-aggressive medicine anywhere from 20 to 35 %. Given that end-of-life costs make up a quarter of the Medicare budget, steering patients away from the ICU makes for good economics right? If that is the case then shouldn't all states follow suit? There are caveats however - that are well brought to our attention in this write up, on the Disease Care Management Blog.

Doctors cannot predict the end of life: "When confronted with a critically ill cancer patient, popular culture would have you think the physicians can predict the likelihood of not making it out of the ICU alive and can therefore treat accordingly. The problem is that the prediction is far from perfect with an ROC, according to this study, of about 0.8 (where 1 is perfect). In other words, there are enough false positives to give physicians pause before recommending pulling the plug." Further, "for non-cancer patients, the prognostic tools are even worse".

Research on hospice is on shaky ground: "given our national manic compulsion for "evidence-based" science to guide treatment decisions, that the research supporting the benefits of hospice is decidedly shaky. Dr. Gawande only quoted some studies that happened to support his point of view"

Having said that, what could change is a physician's perspective on palliative care – not as an option after all else fails.

Healthcare Reform & End-of-life Costs

When President Obama's chief budget deputy Peter Orzag announced the stimulus bill (American Recovery and Reinvestment Act of 2009), he mentioned that the U.S. spends $700 billion each year on medical tests that don't help patients get healthier.

Policy analysts have long known that much of this seemingly wasteful spending occurs during emotionally challenging moments at the end of life. We often are willing to spend the most on those who are the sickest--even when it is unlikely to make them better. Given the highly sensitive situations involved, most politicians have been reluctant to touch this issue with a ten foot poll.

At least until now.

The recent healthcare bill drafted by the House takes on the costs of end-of-life care heads-on by providing doctors with financial incentives to counsel patients on creating "advanced directives" (commonly known as "Do Not Rescusitate/Do Not Intubate" orders). Since many patients can be sustained indefinitely on ICU life-support, the bill is meant to save money by reducing so-called "futile care".

However, the normally sympathetic editorial staff of the Washington Post has taken issue with this aspect of the bill, on the grounds that it is unethical to put financial rewards and end-of-life counseling in such close proximity. What do you think?