Opinion Perspective There is neither clear evidence nor prospective randomized trial results showing that targeting proteinuria to a goal is beneficial in terms of long-term outcomes, but it is evident that targeting proteinuria with dual therapy is harmful. Our patient did not achieve the less than 1 g/d proteinuria goal with dual therapy yet experienced AKI and hypotension. When weighing risks and benefits of therapy, one should not institute therapy on the basis of a theoretical benefit when there is proven harm. Published Online: August 4, 2014. doi:10.1001/jamainternmed.2014.3460. chronic kidney disease. Am J Kidney Dis. 2004;43 (5)(suppl 1):S1-S290. inhibition for the treatment of diabetic nephropathy. N Engl J Med. 2013;369(20):1892-1903. Conflict of Interest Disclosures: None reported. 3. Mann JF, Schmieder RE, McQueen M, et al; ONTARGET Investigators. Renal outcomes with telmisartan, ramipril, or both, in people at high vascular risk (the ONTARGET study): a multicentre, randomised, double-blind, controlled trial. Lancet. 2008;372(9638):547-553. 5. National Kidney Foundation. KDOQI clinical practice guideline for diabetes and CKD: 2012 update. Am J Kidney Dis. 2012;60(5):850-886. 1. Messerli FH, Staessen JA, Zannad F. Of fads, fashion, surrogate endpoints and dual RAS blockade. Eur Heart J. 2010;31(18):2205-2208. 2. Kidney Disease Outcomes Quality Initiative (K/DOQI). K/DOQI clinical practice guidelines on hypertension and antihypertensive agents in 4. Fried LF, Emanuele N, Zhang JH, et al; VA NEPHRON-D Investigators. Combined angiotensin LESS IS MORE PERSPECTIVE Paul B. Bascom, MD Dr Bascom lives in Portland, Oregon. Related article page 1431 Corresponding Author: Paul B. Bascom, MD, Palliative Medicine Physician, 1327 NE 33rd Ave, Portland, OR 97232 (paulbbascom@gmail .com). 1430 The Many Stories of My Mother’s Death Of the many stories of my mother’s death, this one is the easiest to tell. “My mother had a good death. My mother died shortly after her beloved primary care physician, with tears in his eyes, removed the CPAP machine that kept her alive just long enough for us to gather at her bedside. My mother died to the sound of music. She died as we sang the songs that accompanied our family road trips and camping adventures more than 40 years before. We had no trouble remembering the words.” This is the story our local newspaper reported, a story of the untimely death of a community activist. “Former Eugene Mayor Ruth Bascom died Thursday evening, leaving behind a legacy of advocacy and action that few local residents can match. Bascom, 84, had been hospitalized since she suffered a fractured neck and fractured ribs in a car crash. Family members said she had a sudden large stroke and died several hours later.” This is the story the police report told, a story of the cold, hard facts. “At approximately 4:30 PM a 2009 Toyota Prius driven by John Bascom, age 85, was southbound on Highway 395 when he apparently fell asleep. The car traveled off the highway and struck several boulders and trees.” This is the story her discharge summary told, a story of medical details without context. “The patient was transferred here after an MVA. On day 10, the patient developed atrial fibrillation and a few days later, dysarthria and transient hemiplegia. CT angiogram revealed partial occlusion of her L MCA. Anticoagulation was contraindicated due to her recent trauma. The following day the patient became obtunded. The family chose to make her comfortable and she expired shortly thereafter.” This is the story her medical bills told, a story of hightech, expensive and ultimately futile medical interventions. The bill for her last 15 days of life: $216 000. This is the story I prefer not to remember. My mother had a horrible death. My mother died after 15 days of mis- ery in an intensive care unit. She died having endured severe pain from her broken neck and ribs, her pain medicine restrictedoutofconcernsfordelirium.Mymotherdiedwith screws bored into her skull, a halo attached to a stiff chest harnessthatmadeherbreathingyetmorepainfulandmore difficult. My mother died having suffered what she described as a “cold wind” every time the CPAP mask was strappedtoherface.Hermouthdriedout,herlipscracked, and she felt terribly thirsty. However, because of concerns about her swallowing, she was allowed only ice chips. So how did this happen? The secret to quality endof-life care, we are told, is to complete an advance directive, so that our preferences can be known before a medical crisis occurs.1 My mother completed her advance directive many years ago. Her advance directive stated unambiguously: “If I am close to death, I want NO life support.” In her medical crisis, however, my mother’s advance directive proved irrelevant. Her physicians did not considerherclosetodeath.Themedicalstorypassedfrom physician to physician told of a previously healthy elderly woman who had suffered broken bones in an accident. I knew she was close to death. I knew immediately on hearing the details of the accident that my mother could not,wouldnot,surviveherinjuries.Myfathersufferedonly bruises. He was protected by his seat belt and air bag. My motherhadsevereosteoporosis.Theseatbeltcrushedher ribs, and the air bag shattered her neck. I knew that there was no way her brittle bones would ever heal. I knew she would die. I just wondered when, and how. The other secret to quality end-of-life care is to have aconversationwithyourfamilyaboutyourpreferences,so that they may speak on your behalf when a medical crisis occurs.2 IwascertainthatIknewwhatmymotherwanted. I remembered conversations we had 20 years earlier. I remembered my mother’s distress when her mother’s very specific advance directive was ignored at a dementia care center across the country. I arranged for my grandmother JAMA Internal Medicine September 2014 Volume 174, Number 9 Copyright 2014 American Medical Association. All rights reserved. Downloaded From: http://archinte.jamanetwork.com/ by a Tel-Aviv University User on 09/09/2014 jamainternalmedicine.com Opinion to be transferred to a hospice in Oregon. There she received care consistent with her wishes and was allowed a peaceful death. Yet, in my mother’s medical crisis, I felt powerless. I did not raise my voice to speak on her behalf. When a surgeon recommended placing a chest tube to drain her hemothorax, I did not say, “Why put her through that? I am certain she will die anyway.” Mymotherseemedtounderstandthattherecoverystorythephysicians were telling her was fiction. In a lucid moment a few days before the stroke, she began to plan her funeral. “Pastor Greg,” she said, in the toneofvoicesheusedwhensheexpectedtobeobeyed,“Iwantashort memorial service, less than an hour, with more music than words.” Yet she, too, submitted meekly to each burdensome intervention, bowing to the authority of her physicians with silent acquiescence. Each day at work as a palliative medicine physician I advocate vigorously for patients near the end of life. Yet even when my mother entered the recognizable death spiral known as the “Weissman triad” (feeding tube, restraints, pulse oximeter),3 I could not summon up the courage to challenge her physicians’ authority. I wanted to cry out: “Do you not recognize that your best medical technology cannot rescue her tired and broken body?” Instead, I said nothing. Why did I remain silent? The lesson I have gleaned from my own mother’s death is this: our standard approach to end-of-life decisionPublished Online: July 28, 2014. doi:10.1001/jamainternmed.2013.12205. Conflict of Interest Disclosures: None reported. 1. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc. 2007;55(2):189-194. 2. The Conversation Project. http://theconversation project.org/. Accessed September 10, 2013. making places an enormous and unfair burden on patients and families.4 Thestandardapproachistofirstelicitfrompatientsandfamilies their preferences, finding out what they want. But my mother was frequently delirious. My father was so grief-stricken he could barely speak. And I was not about to say, “My preference is that my mother dies.” Nor was I willing to ask my mother, “Do you want to die?” At work, I no longer ask patients and families what they want. I know what they want. They want our wisdom about prognosis.5 They want to know when further medical treatment will no longer restore health.6 They want our guidance, and compassionate sharing of the news that death is near.7 When I received the news of my mother’s massive stroke, I felt relieved. Her dying was now visible for everyone to see. From my perspective, the stroke was the blessing that brought an end to her misery. To this day I wonder, absent the stroke, how much suffering would she have endured before she, or I, or someone, said “enough!”? I know which story of my mother’s death I prefer to tell. Maybe it’s not the truer story, but it’s the better story. “My mother had a good death. My mother died to the sound of music. She died as we sang the songs that accompanied our family road trips and camping adventures more than 40 years before. We had no trouble remembering the words.” 3. Weissman DE. Swallow studies, tube feeding, and the death spiral: fast facts and concepts, No. 84. http://www.eperc.mcw.edu/EPERC /FastFactsIndex/ff_084.htm. Accessed September 10, 2013. discussions about limiting life support in intensive care units. Crit Care Med. 2007;35(2):442-448. 4. Sulmasy DP, Snyder L. Substituted interests and best judgments: an integrated model of surrogate decision making. JAMA. 2010;304(17):1946-1947. 7. Back AL, Trinidad SB, Hopley EK, Arnold RM, Baile WF, Edwards KA. What patients value when oncologists give news of cancer recurrence: commentary on specific moments in audio-recorded conversations. Oncologist. 2011;16(3):342-350. 5. White DB, Engelberg RA, Wenrich MD, Lo B, Curtis JR. Prognostication during physician-family 6. Rosenfeld KE, Wenger NS, Kagawa-Singer M. Endof-life decision making: a qualitative study of elderly individuals. J Gen Intern Med. 2000;15(9):620-625. LESS IS MORE PERSPECTIVE Lisa M. Letourneau, MD, MPH Executive Director, Maine Quality Counts, Manchester. Related article page 1430 Corresponding Author: Lisa M. Letourneau, MD, MPH, Maine Quality Counts, 16 Association Dr, PO Box 16, Manchester, ME 04351 (LLetourneau @mainequalitycounts .org). jamainternalmedicine.com Next Time I’ll Ask As an internist by training, former emergency physician, and now, quality advocate, I spend much of my time urging physicians to engage patients to take a more active role in their health care. Yet I found myself falling uncharacteristically silent, never asking a single question about potential alternatives or the drug’s cost. I headed to the local pharmacy, knowing the bill would be considerably higher than the old days of $7 amoxicillin. But not until I picked up the antibiotic did I learn its cost: $140 for a 7-day course of treatment. While I was fortunate enough to have the resources to buy the prescription and gratefully watched my mother recover over the next week, I wondered how many people, particularly older adults like my mother, living on a fixed income, would have walked away without the medicine, hoping “things will get better,” only to return to the emergency department a few days later in a more precarious condition. I knew I should have asked. My 82-year-old, “I’m fine” mother had struggled with a worsening upper respiratory tract infection and cough for 5 days. My sister and I finally convinced her to leave her home an hour north of us to spend a few days under our watchful eyes. As her cough and fever continued to worsen, my mother reluctantly agreed to go to the local hospital emergency department. My mother and I listened attentively to the p hy s i c i a n’s d i ag n o s i s o f p n e u m o n i a , a n d we were reassured to learn she was a good candidate for oral antibiotic therapy and outpatient care. Feeling grateful and trusting, my mind prickled only slightly when the emergency department physician recommended a newer, broad-spectrum antibiotic, without a discussion of cost, my mother’s ability to pay, or the possibility of a less-expensive, equally effective treatment. JAMA Internal Medicine September 2014 Volume 174, Number 9 Copyright 2014 American Medical Association. All rights reserved. Downloaded From: http://archinte.jamanetwork.com/ by a Tel-Aviv University User on 09/09/2014 1431 Opinion The biggest surprise was not the drug’s price, but rather my own reluctance to ask questions. How could this be? This strange transformation of my usual outspoken self into passive bystander raises concerns for me professionally, as I am helping to promote the American Board of Internal Medicine’s “Choosing Wisely” initiative in Maine. Choosing Wisely is a physician-led effort to engage physicians, clinicians, and patients in conversations about making wise choices about the use of tests and treatments that are often overused. Patients’ willingness to question a recommendation from their physician is a fundamental premise underlying the effort’s goals. Yet studies, surveys, and, in my case, personal experience, reveals that most patients remain silent, just as I did. Older adults especially report feeling unprepared and unwilling to challenge the perceived authority of their physician. They express concerns that questions could appear disrespectful or could cause their physician to view them as “difficult.” (And some health care practitioners do bristle when patients question their recommendations.) Patients often feel unequipped to engage in a dialog with a person who often speaks a technical language they do not understand. When they are sick, scared, and vulnerable—particularly when their practitioner appears rushed—these concerns become Published Online: July 28, 2014. doi:10.1001/jamainternmed.2014.3049. Conflict of Interest Disclosures: Maine Quality Counts is a grantee of the American Board of insurmountable barriers to the productive dialog we practitioners say we want with “engaged patients.” Efforts to reduce unnecessary care, such as Choosing Wisely, will not work unless we physicians and other health care providers invite questions and create a “safe space” for our patients, saying, for example, “It can be hard for patients to ask questions but it would help me if you did.” We can model the experience for patients, saying, “When I’ve gone to the doctor with my mother, even I sometimes find it difficult to ask questions or challenge a doctor’s recommendation. I’m not sure if you’re feeling that way now, but I hope you know it’s okay to ask me about anything I’ve said.” And cost should be an acceptable topic of conversation between health care practitioner and patient. With high-deductible health plans, more and more Americans are paying higher out-ofpocket costs, while many others remain uninsured, despite the Affordable Care Act. As health care practitioners, we can help patients avoid financial harm by asking about their ability to pay and offering low-cost alternatives. Ultimately,thesuccessoftheChoosingWiselyinitiative—andmore broadly,ourcollectiveabilitytoreduceavoidablehealthcarespending— requires not only changing patient expectations and behaviors, but changing medicine’s culture. In the meantime, next time I’ll ask. Internal Medicine (ABIM) and has received funding to support efforts to promote the ABIM’s Choosing Wisely initiative in Maine. The funds support general program activities but do not directly fund the author’s salary. LESS IS MORE PERSPECTIVE Brendan R. Jackson, MD, MPH Rollins Emory School of Public Health, Atlanta, Georgia. Corresponding Author: Brendan R. Jackson, MD, MPH, Rollins Emory School of Public Health, 1518 Clifton Rd NE, Atlanta, GA 30322 (brendanjac @gmail.com). 1432 Rescuing My Grandmothers It was midway through internal medicine residency when a fellow resident turned to me and said, “I’m done with this medical torture.” I knew exactly how he felt. We had been working furiously to care for very sick, elderly patients in the intensive care unit, performing invasive procedures, carefully selecting medications, and sometimes ordering the use of physical restraints when patients became delirious and agitated. I had felt uneasy about this care when it seemed futile, but I had been too overwhelmed and exhausted to challenge the status quo. Now, I could no longer avoid my own misgivings. From that point on, I did my best to talk with patients and families in a frank and open way about their expectations for medical care at the end of life and the reality of what medicine could and could not accomplish. Although difficult, these discussions were some of my most rewarding experiences in my residency. On several occasions, patients’ children, themselves in their 50s or 60s, stopped me in the hall to thank me for helping their mother or father die in peace. Since then, both my grandmothers died in their late 80s. Both lived independently until their final hospitalization. Both made it vigorously known that when the situation arose, they wanted to die peacefully without excessive intervention. Despite my experience in residency and the fact that my father is also a physician, it turned out to be incredibly difficult to give them what they wanted. In 2009, my maternal grandmother suffered a ruptured iliac artery aneurism and was rushed to the hospital. Against all odds, she made it through emergency surgery and was conversing with family 5 hours later. Then she aspirated gastric contents, and a series of specialists went to work, with no one in charge of her care and no one to talk to her grieving family, who were there at all hours asking questions. Even as the problems and interventions multiplied, her physicians never asked what she would have wanted; they never offered guidance that would have helped her 7 children let her go. It was torture to watch; it must have been even worse for her to endure. More than a week later, our family, without support from the hospital, found a hospice where she was transferred. There, she was given a warm, supportive environment during her final hours. Just over a year later, we went through a similar experience with my paternal grandmother, who was hos- JAMA Internal Medicine September 2014 Volume 174, Number 9 Copyright 2014 American Medical Association. All rights reserved. Downloaded From: http://archinte.jamanetwork.com/ by a Tel-Aviv University User on 09/09/2014 jamainternalmedicine.com
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