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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.
This program aired on November 16, 2009. The audio for this program is not available.
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