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I remember joking with Dad about how he’d outlive us all. He had gone vegetarian 10 years before I was born, never smoked, took vitamins, and asked for a designated driver after his annual Heineken at the neighbor’s Christmas shin-dig. He flossed, wore a seat belt, and looked forward to annual physicals. If I tried leaving our Michigan house in the winter with more than 3 inches of skin exposed, he would follow me to the door yelling “It’s no fun being sick!” We were always working class, but both my parents had union jobs with solid benefits and therefore we were covered by two health plans. Despite our attempts at persuasion, he refused to drop his coverage–the Rolls Royce of health plans, as we dubbed it–in favor of my mother’s plan. “I don’t want to worry about bills” he said, and only dug his heels in after retiring.
Nevertheless, on his 64th birthday my father had an endoscopy, after which the physician looked stricken. Later I saw images of the adenocarcinoma that spread like a hand around the top of his stomach and into his liver. He was supposed to have 3 months without treatment, but things were looking up after a few rounds of chemotherapy. He was tolerating the treatment well, and the spots on his liver shrank. Thank God he stuck to his guns about the insurance, I thought. It was one less thing to worry about.
Just after Christmas, my father caught a minor infection but was hospitalized for a week. Listening outside the curtain in the emergency room as he had a Foley inserted was a low point, but I did not know then about the insults left to come. He pulled through, but decided to stop chemotherapy the following month. Around March, Mom mentioned that collections notices had started coming to the house, and that dad had tried to hide them.
I wanted to help, but she had no idea what the bills were for, and couldn’t understand how there could be a bill when we had two good health plans. Mostly what I gleaned was that she was scared. She was trying to get him to his appointments on time, make sure he took his medications, feed him and generally cheer him on. I remember ending these calls with a pit in my stomach about where this could lead, but we had to prioritize. One crisis at a time, my mother would say.
The woman unflinchingly emptied buckets, changed diapers and slept in a folding chair next to my father toward the end, but she was not built for the business aspects of illness. So in the week following Dad’s death I called the insurance companies, the hospital, and the collectors to let straighten out the mess. Despite having wading through those bills, I still could not say what his treatments cost. As to what they were worth, there are still no words.
I used to wonder what went wrong, or what I would advise others to do to avoid this kind of stress, short of never getting sick. I have only gratitude for the doctors with regard to his treatment, and for the manufacturers of the treatments that extended his life. But how exactly do you put a price on these that still give allows patients access? Quality costs, and I do not envy the people charged with that task.
Should health care providers routinely ask patients about their financial concerns as it relates to care? In our case, when I think of my sick father hiding away bills, I don’t think it would have hurt. I am left with hope, but no answers for the millions without coverage.
What should they do? When I am a physician, what can I do?
Libertad Flores is a first year medical student at the Alpert Medical School of Brown University.
Cost of Care:
On Labor Day Costs of Care, a Boston-based nonprofit, offerred $1000 prizes for the best anecdotes from doctors and patients that illustrate the importance of cost-awareness in medicine. Two months later we received 115 submissions from all over the country – New York to California, Texas to North Dakota, Alaska to Oklahoma. We feel these stories are poignant because they put a face on some of the known shortcomings of our system, but also because they unveil how commonplace and pervasive these types of stories are. To learn more about the contest and read more of our stories please visit www.CostsOfCare.org (Twitter: @CostsOfCare).
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When one reads the comments from citizens of the country which proclaims loudly that it is the wealthiest, miliitarily strongest and purest democracy, not only in the world but in history, it is unbelievable that the most expensive health care system in the world cannot provide better for an aging population. I am now ninety years of age, suffer from congestive heart failure, COPD and osteoporosis, have had surgery for an abdominal, aortic aneurysm, for removal of a cataract and will have another removed in May and neither now or when I die will my family be stressed by terminal care costs. The accusation of socialism is hurled at us often. To us a common problem requires a common solution not a feeding ground for insurance companies
1st thought: I don’t think people realize the fantastic health care benefits available to federal employees AND the even better benefits that senators and house elected officials have — better than anyone else I know. And this is never discussed in health care debates! If we had laws that required medicaid and medicare to be the identical plan with identical benefits — I think we would see drastic changes to the health care debate. The elected officials plan would be less expensive for the public to fund and the federal plans for others would be better. This would add the information about the plans to the public debate and might even improve the plans available to the rest of us.
2nd thought: physicians and their staff, in my experience, have never known the true cost of health care. I don’t fault them for this — but the clinics and health care business add multiple charges and fees beyond the direct health care delivered. I have not yet figured out how to determine what these fees will be. No other service or product that I am aware of charges the customer in this manner — you don’t know the true final cost until months past any service delivery and it is always far far more expensive than expected. Truly transparent costs to the customer would be a major improvement in my opinion.
hi iam a medico from s.m.s. medi.college jaipur india i am feeling sad to hear about father. in india thousands of people die without medication.i want to do something for these people but what should i do, it is the big question infront of me.
hi iam a medico from s.m.s. medi.college jaipur india i am feeling sad to hear about father. in india thousands of people die without medication.i want to do something for these people but what should i do, it is the big question infront of me.
Great article. I think the federal-level politicians who are out to cut healthcare reform and the state-level politicians who want to duck out of Medicaid are ignoring the reality of patient needs. With their proposed budget cuts, sick people– and the cots to care for them– won’t go away; the costs will only be shifted. So sorry to hear about your father; he sounds like a wonderful man.
You should consider writing a Medical Humanities article for our Journal.
Pamela J. Powers, MPH
Managing Editor, American Journal of Medicine
Despite the challenges, being a doctor is still a very noble profession and calling. As I noted in my article for the same Costs of Care program – https://thehealthcareblog.com/the_health_care_blog/2011/01/cost-awareness-anecdote-not-colon-cancer-.html – regarding patients, it is unfortunately more clear that patients are being charged to figure out what they can and cannot afford.
Yet this is simply wrong to ask them to do our job. As doctors we are the experts on determining the value of treatments and interventions truly worth our patients’ time and money. Our training and social responsibility must reflect that we are not only healers but also thoughtful stewards of our patients’ financial resources. It’s a new mindset we must accept.
Good luck in your career.
—
Davis Liu, MD
Author of Stay Healthy, Live Longer, Spend Wisely: Making Intelligent Choices in America’s Healthcare System
(available in hardcover, Kindle, and iPad / iBooks)
Website: http://www.davisliumd.com
Blog: http://www.davisliumd.blogspot.com
Twitter: davisliumd
Libby is my niece. Her dad, my brother. I’m retired now and have a halfway decent health insurance policy and I’ve always wondered how those that don’t have what we have insurance wise make it.
I live in Texas and as anyone knows, it is mostly Republican now. You know, cut, cut, cut Republicans. Like I tell my congressman, Pete Sessions, I’ll cut my bennies as soon as you get rid of your federally subsidized health care. I have yet to hear back from him. Funny, huh? How the ones that seem to have the most money, in addition to wanting more, don’t want you to have what they have.
Now with the shooting tragedy in Tucson and I see how well a congressional rep is treated, I know she has the same type of health coverage all federal employees have but without all of the fanfare she is attracting and again wonder. Why is it that the supposedly richest country in the world cannot take care of its people? How sad, no?
There’s nothing like a cancer patient having to worry about bills in the middle of their treatment. What kind of health care system would dump that kind of stress on a cancer patient?
Dr. Flores, Yes doctors do need to ask “Can you afford this medication or treatment?? I am sorry to hear the plight of your father,mother and your family. You just do your best. Suffering is a part of being alive. It is almost impossible to deny or avoid. Your particular story is all too common. For many at the end of life, despite having Cadillac plans there are bills for this, that, for medical treatments, and the necessity of life. Most people live beyond their reserves, if they have any. Despite very prudent planning, careful budgeting and economics the vagaries of life infinite depsite carefully navigating the mine field. Hopefully your father is at peace, your mother probably numbed by it all….she misses her mate, but she still has a caring, loving daughter who will be a fine physician