Dr. Annie Brewster, a Boston internist, explores some of the real problems facing patients and their families, and concludes that fixing health care will require a profound shift in our expectations of what medicine can accomplish:
The United States health care system cannot be fixed by legislation alone. No matter what the laws say, our societal expectations, if unchecked, will ensure that health care costs continue to soar.
As Americans, we want the best health care available. Of course we do. But there is a degree of entitlement and misuse of the system. We are uncomfortable with ambiguity and do not like what we cannot control. We want answers and we want a cure. We never accept death. To contain health care spending, a fundamental cultural shift is required.
While I firmly believe that access to high quality, compassionate health care should be a basic human right, there are limits to what we should expect and hard choices to make. I write this to convince myself as well as you. Consider the following scenerios:
A 47-year-old business executive, Mrs. S., comes in to see her primary care physician for her yearly physical. Her exam, including a pelvic, is normal. She feels well. She has no risk factors for ovarian cancer, but she requests that her CA-125 level be checked, noting that she is anxious about this disease despite her lack of symptoms. The doctor explains that CA-125, a protein biomarker that can found in elevated concentrations in the blood of individuals with ovarian cancer, is not recommended as a screening test because of inaccuracy. Many people who do not have cancer will have elevated levels, resulting in expensive and potentially harmful additional testing. She has read about the test on the Internet and feels she understands the risks. She wants it done, and she is adamant. The test is ordered.
A 35-year-old female, Ms. A., is seen in clinic complaining of fatigue and vague abdominal pain. She lives alone and works as a city bus driver. She is run down and has no energy. She is sleeping poorly, has no appetite and has lost weight, but she is not vomiting or having diarrhea, and there is no blood in her stool. Her exam is normal. Blood work is normal (a blood count, electrolytes, kidney function tests, liver function tests, thyroid function tests). She is reassured by the doctor that nothing of concern has been identified and is sent home. Her symptoms continue and she returns to the clinic on multiple occasions, and is seen in the emergency room twice as well. Along the way, she has additional blood work, an abdominal CT, an upper endoscopy and a colonscopy. She is seen by a gastroenterologist, and then a rheumatologist. She admits to feeling depressed and anxious “sometimes,” but refuses a referral to counseling and medications to address these symptoms. She continues to come to the clinic, seeking answers, but there are none to be had. She wants someone to make the pain go away.
Mrs. P was a 68-year-old happily married mother of four and grandmother of twelve who developed breast cancer and died. She had been healthy, and had always done what the doctor recommended, having her yearly physical and mammogram on schedule. In April of 2006 she noticed a breast lump and went to see her doctor. The lump had not been detected on physical exam or mammogram the previous June. The lump was cancer, and it had already spread to her lymph nodes and her liver. She had chemotherapy and lost her hair, vomited, and developed sores in her mouth. She became so thin her own grandchildren were afraid to look at her. The cancer won, and she died 18 months after diagnosis. Her family sued the doctor for malpractice, claiming that the lump had been “missed” at her June 2005 physical exam. A long court case ensued, and the doctor’s insurance company eventually settled with the family.
Mr. V. was a spunky, independent 94-year-old man who read the newspaper daily and did his own grocery shopping until he collapsed one day on the sidewalk in front of his apartment. He wasn’t breathing when the EMTs arrived, and a breathing tube was placed before he was transported to the hospital. He had suffered a massive stroke. Mr. V.’s only son, who lived in a different city, came to the hospital the following day. Mr. V. did not regain consciousness, and the doctors said the prognosis was poor, but Mr. V. had not made his end-of-life decisions known. The doctors raised the possibility of withdrawing care by removing the tube, but Mr. V.’s son was unwilling to do so. Mr. V. remained on a respirator for 3 months, until his heart stopped on its own and he was pronounced dead.
In none of these cases did the patient pay out-of-pocket. The costs were ours, as a society. But I can imagine being any one of these individuals. I would want the CA-125. I would want an explanation for my pain. I would be angry if my mother developed breast cancer despite appropriate preventive care. I would have trouble removing my father from a respirator. But we need to think hard about our expectations. To control health care spending, we all must be accountable.
I don’t have the answers, but here are my thoughts. We should find doctors that we trust and follow their recommendations. If a certain test is not standard of care, we should not demand that it be done. We cannot expect our medical system to heal all of our pain, emotional and physical. We, as a society, need to work harder to strengthen family and community supports. We have to accept ambiguity and loss of control. Sometimes doctors can’t fix the problem, no matter how hard they try. Though egregious medical errors do occur and litigation is at times justified, all too often lawsuits are fueled by anger, unresolved grief, and the need to blame someone. Lastly, we need to encourage end-of-life discussions to clarify patient wishes. We need to know when it is okay to let go of life.
Dr. Brewster,
This is a heartfelt and meaningful post.
I believe many of our troubles in health care today are because we look at the issues you raise through a financial lens. We talk about things like cost when we should really be talking about what it takes to, as you say “find doctors that we trust and follow their recommendations.”
It’s not so much a question of rethinking our expectations of the health care system. It’s instead about repositioning medicine, patients, and their families at the center of health care. And recognizing that who pays for health care, and how they do it, is secondary to these important issues.
I have some related thoughts here: http://bit.ly/1641Wf
Many thanks,
Evan Falchuk
While it is true that we need to accept death, the standard of care doesn’t address the quality of life issues surrounding medical care. Right now, care is aimed at prolonging body function at the expense of quality.
I don’t think the medical field uses the same definition of “life” that many patients, especially those with chronic, non-life threatening conditions use and it is THIS discrepancy that leads to an adversarial relationship between doctor and consumer.
The woman demanding the CA-125 is concerned about her life’s quality, which includes her appearance and self image, and the standard of care ignores.
The woman with pain isn’t having her pain addressed. Doctors are looking for a disease to cure without treating her symptoms and her quality of life is deteriorating.
The 94-year-old’s son was unwilling to live with guilt that would damage his quality of life for years later.
If quality of life would be included in standard or care, much of the anger and frustration would be eased, if not eliminated!
This point is well taken. Physicians’ continuing and expensive practice of defensive medicine is multiply, if not overly, determined by financial, scientific, legal and social factors. There are many reasons for ordering too many, or more expensive tests when cheaper or fewer tests will do, and at least some of that responsibility lies with the patients. It is easy to accept that anonymous “other” patients are driving up healthcare costs by requesting unnecessary tests or too easily resorting to litigation when they are frustrated. But it is much harder, when faced with an ambiguous diagnosis, or an error in a beloved family member’s care, to settle for the fact that (1) science is still nebulous in many areas and what we do not know vastly eclipses what we do know, and (2) physicians are fallible, and human, (and of course to error is human as well).
The dominance of the biomedical paradigm and the continual emergence of new technology misleads us to demanding more medical solutions, either for things which are natural – like some aging processes and death, and for things some things which are better addressed on a preventive level through community means. As a society we expect everything to have a scientific basis and a scientific cure. Ultimately, that proves both myopic and expensive: we develop conditions we could have avoided with a better, and cheaper, focus on prevention (for which the responsibility should lie with both patient and physician), and we pay billions more to treat their distal effects instead of their proximal causes (such as behavioral, social and economic ones). Even more than a fiscal restructuring, a cultural revision of the role of and the management of our expectations from medicine could improve how we deliver and acess healthcare.
Dr. Brewster, I think you highlighted standard cases that are indicative of the current power struggle between patients and physicians engendered from rapidly available medical information online, the desire to ‘cure’, and the desire to establish ‘blame’. I also think you bring up a point that should not be forgotten in the ongoing debate about healthcare reform: a solution needs to affect provider, patient, insurer, and government behavior – meaningful reform will be useless if it focuses on just one of these players.
V. Reichman is right in pointing out that healthcare has gotten off track in its goal to provide patient-centered care by focusing a little too heavily on the biomedical model; Dr. Brewster’s examples further show that the push towards biomedical predominance is not just because of provider insistence. Thus, several points that underlie the patient-physician (and many times, family-physician) relationship from a psychosocial perspective are consistent with two pervasive cultural mindsets in American society. 1) Americans want to have problems solved, which proves messy for a field that has uncertainty like medical biology and 2) Americans, by-and-large, are uncomfortable with death.
The fact that most Americans want a definite answer, or solution, for their health problems creates several problems for providers. First, preventative care is devalued because it involves treating a problem that either doesn’t exist or won’t exist. So, getting patients to buy into preventative care is challenging, and payment schemes don’t reward providers for trying hard to encourage a commitment to prevention. Second, often times patients are frustrated that a surgery won’t “cure” their problems. Recently, my grandfather was hospitalized for chest pain. He had such severe blockage in his arteries that by-passes were impossible because there was no place to by-pass to. While some stents were put in place, he left the hospital frustrated because he couldn’t be ‘cured’ by a single surgery. A by-product of providers receiving such esteem for the ability to treat complicated disorders, many patients feel that physicians can solve all their health problems no matter the stage of their illness. The outcome for this mindset could be patients being sicker before they seek treatment, or an exacerbation of the biomedical model for treatment at all costs. Third, if patients are frustrated that their provider is not “pulling out all the stops”, they may resort to readily available information on the internet to treat themselves, or demand certain care from their provider. The patient demand for procedures has contributed to the exponential increase in healthcare costs.
My second point, America’s uneasiness with death, fuels the malpractice culture and excessive use of expensive life-prolonging treatment. Death is always seen as something to avoid no matter the circumstances, sometimes with a poor ‘life quality’ being preferred to death in the minds of both patients and their families (and providers too). Many times families of unconscious or comatose patients insist on life-sustaining treatments because death is a ‘bad’, ‘evil’ thing that is not talked about sufficiently in society and is unequivocally a bad outcome. Further, when death does occur in the medical environment, there is the urge on behalf of families to determine blame for this terrible event, whether it is negligent or not. Perhaps if death and healthy grieving strategies were more common in conversations in our culture, ‘life-at-all costs’ would be a mantra that lessens in importance. Sadly, the palliative care options in the healthcare industry have been slow to catch on among patients and their families for this reason (among others), not to mention potential undervaluing from insurers and providers alike.
While doctors can’t fix everything, they can do something. Physicians alone cannot change society’s beliefs, values, or healthcare preferences. However, they can still make a difference by taking the time to sincerely discuss their patient’s demands and end-of-life issues. While treating one less patient a day to make room for effective discussions with patients and their families may affect physicians’ wallets, so do malpractice suits and reductions in insurer reimbursements when unnecessary tests are done in excess. Physicians need to take the lead in preventing the situations Dr. Brewster offers, before the situation that “doctors can’t fix everything” becomes “doctors can’t fix anything”.