Healthcare 101—Surviving Your Doctor
Fri May 25, 2007 at 02:09:46 PM PDT
Everyone has their problems, but patients bouncing back from medical treatment can have problems you’d never think of. I treated an interesting guy at a Veterans Hospital for throat cancer. As the textbooks would say, he did great because his cancer disappeared. But this was before newer radiation treatments were available, and he lost much of his salivary gland function, so he had dry mouth all the time. Turned out that his major concern going into treatment was whether he’d get to ride his motorcycle again (I am no longer shocked when somebody says something other than "living" when asked this). So what happened next?
About a year out from being treated, he sees me in follow-up, dressed in a Kevlar riding suit, and motioned to his Gold Wing in the lot outside. He gave me advice to pass on to my other customers. They should all get motorcycles. He has figured out that by riding around with a bandana over his mouth, he could soak it with a water bottle and the wind would help keep his mouth moist. He did confess to this being a seasonal solution, but he planned to make that a reason to ride South on I-5 during winter. Half jokingly, he told me that he came for his visit to check on how I was doing. I said ok, but not as good as some of my patients, less than half jokingly.
This won’t be about how to seek the "VA’s Way to Do Tao" because very few folks are this fortunate, either through circumstance, attitude, or cleverness to turn such sour lemons into lemonade, especially at the VA. It’s been well documented on this site how difficult and expensive it is to get covered by a health plan with a pre-exiting condition. And how expensive COBRA can be while you scurry for that one-in-a-million job with decent health benefits. But what if medical treatment itself give you a new "pre-exiting condition"? Money aside, how are these managed by the US health care system? Sounds like a leading question, doesn’t it? Well maybe, maybe not—let’s take a look see....
A great example of the long term consequences of medical care has been highlighted by a spate of interest in the side effects of cancer treatment. A recent article in the NY Times profiled an increasing formal recognition of "chemo brain", i.e. subacute cognitive deficits seen in patients treated with high dose chemotherapy. Each type of cancer has a fairly predictable constellation of health consequences following cure, on account of the types of treatment employed for each cancer. Take, for instance, breast cancer. One-quarter of the 10 million cancer survivors in the US have this diagnosis (four times the population of Vermont). In addition to chemo brain, these patients contend with breast-related cosmetic issues following surgery and radiation, hair loss, arm swelling due to lymphatic blockage, premature menopause, infertility, cardiac toxicity from chemotherapy and newer biologic therapies, and chronic psychosocial stress. Throat cancer, what I specialize in, is notorious for its post-treatment problems. Dry mouth only scratches the surface of this one, since treatment can deprive patients of the most elemental of human functions, including eating, hearing, vision, smell, taste, talking, and cosmetic appearance. Probably the most difficult problems, however, are seen in pediatric cancer patients. About 80% of such patients are now cured of disease, and many bounce back to have near normal lives, as I got to see as a summer camp counselor at Camp Ronald McDonald for Good Times (one of the coolest things you could ever donate your time for). But, as highlighted in a recent New England Journal article, these patients face a lifetime’s worth of risk of facing severe secondary chronic medical problems or new cancers.
It’s not like doctors didn’t know about or care about this stuff, it’s just that decades were required to figure out how to give people the chance for cure in the first place. If a patient lived long enough to have problems from treatment, it was essentially a (pyrrhic) sign of success. Belatedly, the term "survivorship" has entered the vocabulary of Oncology. The need for emphasis on survivors’ issues has been highlighted in a publicized publication from the IOM, as well as by the creation of targeted support groups by ASCO(the major clinical oncology organization) and the American Cancer Society. Probably the best resource for survivorship issues was not started by a doctor or nurse, but by a patient. The Lance Armstrong Foundation has practically claimed ownership of this issue. Interestingly, many of the resources necessary to aid patient recovery have been improving all along but have simply not been coordinated with cancer care, which bodes well for short term future progress now that people are noticing. An entire field of medicine, Rehabilitation Medicine, encompasses a spectrum of physicians, nurses, therapists, counselors, and other specialized experts who can tangibly assist with the physical, emotional, cognitive, and social challenges faced by cancer patients after treatment. None of this takes away from the fact that Oncology has been unnecessarily slow to bring this to the forefront, both in the US and abroad. The current body of literature on this topic to this day remains remarkably scant and immature relative to the vast amount of sophisticated research devoted to understanding mechanisms and cures. Is this a reflection of our culture’s fixation on "quantifiable" results (i.e. cure rates) as opposed to subjective outcomes (i.e. quality of life)?
Also, cancer is a high profile illness. Where does this leave patients recovering from serious problems caused or not improved by treatment for less "glamorous" conditions, such as trauma, organ transplant, psychiatric/neurodegenerative disease, etc? Drug treatment for "mundane" conditions, such as diabetes and hypertension, can cause very serious side effects. And notice that the words "financial support" is not included anywhere above. Medical plans vary widely in their coverage of intermediate rehab care (my own BC/BS coverage is reasonable but doesn’t last long), and I can’t think of any (other than perhaps the VA, which does it poorly and makes eligibility difficult) which pay out much for long term rehab outside of the context of pre-existing disability coverage. Although protected by Americans with Disabilities Act, cancer survivors continue to face potential discrimination by employers. And outside of FMLA, how does society really provide financial support for caregivers? To editorialize, these are crucial issues for discussion because these issues reflect our country’s lack of will towards creating and sustaining a true national community which cares for its most vulnerable. If there are federal programs (other than SCHIPs, Medicaid, the VA, or Medicare) which provide reasonable assistance for such folks, I’d love to hear about them. I Googled this as best I could and got squat. Nor did I find anything for my state. All of this is fixable with better public policy. All of it.
Similar issues pertaining to health care for chronic conditions to think about include:
- Long term care (i.e. elder care). Approximately 12 million people over the age of 65 in the US require assistance with "activities of daily living", either intensive help in an institutionalized setting, or through at-home assistance. Long term custodial care costs up to $10K/month and are covered by only two federal programs which serve as end-of-line safety nets for the poor, Medicaid and the VA. Trust me, grandpa ain’t living large under either of these plans. Stand alone, private long term health care policies do cover these costs , and my advice to you is to seriously look into this if you are middle aged and have the means. My bias is that deficiencies in elder care reflect deeper deficiencies in how our society values (or doesn’t value) the concept of "family". I researched how elder care was covered by the ultimate socialized medicine program, the NIS of Norway (which I was able to see in action in person), and all elder care is supported by municipalities, is not limited by age restrictions, and emphasizes home care over institutions. It helps, of course, that Norwegians work fewer hours (allowing for more direct involvement from family members), pay a flat rate for comprehensive coverage through payroll taxes, and are subsidized to no small degree by North Sea oil export windfalls.
- Post-treatment surveillance (i.e. "follow-up appointments"). The frequency and intensity of follow-up check-ups for conditions such as cancer, hypertension, post-stroke care, diabetes, etc. has typically been formulated empirically, and can vary widely across providers even in the same medical center. Very few randomized trials have been done to see how best to design regimens for post-treatment tests and exams after cancer treatment, and any results which favor less intense follow-up tend to be eschewed by expert panels in the US in favor of more rigorous scheduling (for a variety of reasons, including medical-legal ones). Although medical "charges" for such visits tend to be relatively modest, the true costs are not, when one factors in transportation, lost productivity, and patient stress. This remains an open-ended issue.
- Universal child health care. A topic unto itself, but an obvious way to reduce chronic health care costs through prevention. I realize this may be controversial to say, but this should be the starting point for discussions of universal health care (note I didn’t use the word "coverage", which different and inferior). This also applies to the "young at heart"—health plans have recently paid a lot of lip service to "preventative care" (weight loss programs, smoking cessation, annual exams). However, even the most progressive of plans remain relatively skimpy in this area.
This post is dedicated to those on this site who battle chronic medical problems everyday, and to their families. Here's to a future where we can offer you more than a Honda GoldWing brochure....
Permalink | 76 comments