PERSPECTIVE PATENTS, PRO FITS, AND THE AMERIC From the Center for the History of Medi-(Technology Quarterly). December velopment: patents and technol cine, University of Michigan, Ann Arbor (http:/www.economist.com/node/14 3. Schacht WH. The Bayh-Dole Act: s 1996;82:1663-727 1. The University and Small Business Patent issues in patent policy and the cor 5. Stevens A). Th ent of Bayh-Dole. 1980.94Stat.3015 2012. ok:101056/NEMp1306553 2. Innovation's golden goose. Economist 4. Eisenberg RS Public research and private Copyright e 2013 Massachusetts Medical Society. "Good"Patients and"Difficult "Patients-Rethinking Our definitions Louise Aronson M. D our weeks after his quadru- ratory abnormalities, except that a daughter and leave the doctor- ple bypass and valve repair, the INR was above the target ing to others. But I had been 3 weeks after the bladder infec- range. The doctor guessed the holding a thought just beyond tion, pharyngeal trauma, heart trouble was a bit of dehydration. consciousness, and not just be- failure, nightly agitated confu- He would watch for a while, just cause I hoped to remain in my sion, and pacemaker and feed- to be safe assigned role as patient's off- ing-tube insertions, and 2 weeks My mother waited with my fa- spring. At least as important, I after his return home, I was help. ther. The rest of us filed in and didn ' t want to be the sort of fam ing my 75-year-old father off the out, not wanting to crowd the ily member that medical teams toilet when his blood pressure tiny room. Then my father's complain about. Now that I'd ap- dropped out from under him. As blood pressure dropped again. I parently taken on that persona, did his legs. old the and stayed out of there was no longer any point in held him up. I shouted for the way She silenced the alarm, suppressing the thought. Al- my mother. As any doctor would, upped ids, and rechecked though the differential diagnosis I kept a hand on my father's pulse, the blood pressure. It was better. for hypotension is long, my fa- which was regular: no pauses, no But less than half an hour later, thers heart was working well, accelerations or decelerations listened as the machine had adhered to the carefully cal- My mother was 71 years old scanned for a reading dropping culated regimen that we'd re- and, fortunately, quite fit. She from triple to double digits be- ceived for his tube feeds and free had been making dinner and said fore it found its mark. The num- water intake, and he did not have she dropped the salad bowl when bers flashed, but the silenced new medications or signs of in- I yelled for her. She took the stairs alarm remained quiet. I pressed fection. Those facts and his over- two at time. Something about my the call button, and when the ly thin blood put internal bleed- tone. she said nurse arrived I asked her to call ing like a neon sign at the top of Together, we lowered my fa- for the doctor. When ne the differential ther to the bathroom floor. I told came, I went to the nursing sta- I rested my hand on my fa- her to keep him talking and to tion and made my case to the ther's arm to get his attention call me if he stopped, and then assembled doctors and nurses. and said, "Dad, how much would I dialed 911 They were polite, but their un- you mind if i did a rectal o In the emergency department, spoken message was that they We doctors do many things ter some fluids, my father felt were working hard, my father that are otherwise unacceptable better. My mother held his hand. wasn't their only patient, and We are trained not only in how We compared this new hospital they had appropriately prioritized to do such things but in how to with the last one where we'd their tasks. I wondered how many do them almost without notic pent so many weeks but which times I had made similar assump- ing, almost without caring, at had been diverting ambulances tions and offered similar assur- least in the ways we might care elsewhere that evening. The doc- ances to patients or families in different circumstances or set- tor came in and reported no ECG After weeks of illness and tings. A rectal exam on one' changes and no significant labo- caregiving, it can be a relief to be father, of course, is exactly the ENGLJMED 369: 9 NEJM.ORG AUGUST 29, 2013
PERSPECTIVE 796 n engl j med 369;9 nejm.org august 29, 2013 Patents, Profits, and the American People From the Center for the History of Medicine, University of Michigan, Ann Arbor. 1. The University and Small Business Patent Procedures (Bayh-Dole) Act of 1980. Public Law 96–517, 96th Congress. December 12, 1980. 94 Stat. 3015. 2. Innovation’s golden goose. Economist (Technology Quarterly). December 12, 2002 (http://www.economist.com/node/1476653). 3. Schacht WH. The Bayh-Dole Act: selected issues in patent policy and the commercialization of technology. Washington, DC: Congressional Research Service, December 3, 2012. 4. Eisenberg RS. Public research and private development: patents and technology transfer in government-sponsored research. Va Law Rev 1996;82:1663-727. 5. Stevens AJ. The enactment of Bayh-Dole. J Technol Transf 2004;29:93-9. DOI: 10.1056/NEJMp1306553 Copyright © 2013 Massachusetts Medical Society. “Good” Patients and “Difficult” Patients — Rethinking Our Definitions Louise Aronson, M.D. Four weeks after his quadruple bypass and valve repair, 3 weeks after the bladder infection, pharyngeal trauma, heart failure, nightly agitated confusion, and pacemaker and feeding-tube insertions, and 2 weeks after his return home, I was helping my 75-year-old father off the toilet when his blood pressure dropped out from under him. As did his legs. I held him up. I shouted for my mother. As any doctor would, I kept a hand on my father’s pulse, which was regular: no pauses, no accelerations or decelerations. My mother was 71 years old and, fortunately, quite fit. She had been making dinner and said she dropped the salad bowl when I yelled for her. She took the stairs two at time. Something about my tone, she said. Together, we lowered my father to the bathroom floor. I told her to keep him talking and to call me if he stopped, and then I dialed 911. In the emergency department, after some fluids, my father felt better. My mother held his hand. We compared this new hospital with the last one where we’d spent so many weeks but which had been diverting ambulances elsewhere that evening. The doctor came in and reported no ECG changes and no significant laboratory abnormalities, except that the INR was above the target range. The doctor guessed the trouble was a bit of dehydration. He would watch for a while, just to be safe. My mother waited with my father. The rest of us filed in and out, not wanting to crowd the tiny room. Then my father’s blood pressure dropped again. I told the nurse and stayed out of the way. She silenced the alarm, upped the fluids, and rechecked the blood pressure. It was better. But less than half an hour later, we listened as the machine scanned for a reading, dropping from triple to double digits before it found its mark. The numbers flashed, but the silenced alarm remained quiet. I pressed the call button, and when the nurse arrived I asked her to call for the doctor. When no one came, I went to the nursing station and made my case to the assembled doctors and nurses. They were polite, but their unspoken message was that they were working hard, my father wasn’t their only patient, and they had appropriately prioritized their tasks. I wondered how many times I had made similar assumptions and offered similar assurances to patients or families. After weeks of illness and caregiving, it can be a relief to be a daughter and leave the doctoring to others. But I had been holding a thought just beyond consciousness, and not just because I hoped to remain in my assigned role as patient’s offspring. At least as important, I didn’t want to be the sort of family member that medical teams complain about. Now that I’d apparently taken on that persona, there was no longer any point in suppressing the thought. Although the differential diagnosis for hypotension is long, my father’s heart was working well, I had adhered to the carefully calculated regimen that we’d received for his tube feeds and free water intake, and he did not have new medications or signs of infection. Those facts and his overly thin blood put internal bleeding like a neon sign at the top of the differential. I rested my hand on my father’s arm to get his attention and said, “Dad, how much would you mind if I did a rectal?” We doctors do many things that are otherwise unacceptable. We are trained not only in how to do such things but in how to do them almost without noticing, almost without caring, at least in the ways we might care in different circumstances or settings. A rectal exam on one’s father, of course, is exactly the
PERSPECTIVE GOOD PATIENTS AND"DIFFICULT PATIENTS same as other rectal exams ould have made different choic- specially designated sections of and also completely different. es than I did, the impetus for my the medical record) and reward Luckily for me, my father was a decisions lay in a trait of our (through diagnostic and billing doctor too. When I asked my crazy medical culture. When we call codes) the time that providers Kid, "he replied, "do what you patients and families "good, "or spend talking to patients and uestion. he smiled ave to do i label, we are noting and reward- I'll never know whether such I found gloves and lube. I had ing acquiescence. Too often, this changes would have altered my him roll onto his side. And after-"good"means you agree with me behavior or that of the medical ward, I took my bloody gloved and you dont bother me and you staff on the night of my father's finger out into the hallway to let me be in charge of what hap- massive intestinal bleed, and for- prove my point. pens and when. Such a defini- tunately we all acted in time. I do nurses'station holding aloft one 's know about truly good care as a vivid image I have of that night is bloody, gloved hand is not an op- collaborative process. From the not my father wobbling in the timal tactic from a professional- history that so often generates bathroom surrounded by cold, ism standpoint -but it worked. the diagnosis to the treatment hard tile and angular metal struc- a nurse followed me back into my that is the basis of care or cure, tures, or a mustard yellow bed fathers room, saw my panicked active participation of patients pan filling with bright red blood. mother holding a bedpan over- and families is essential to opti- The image is this, a worst-case flowing with blood and clots, and mal outcomes might-have-been scenario had I called for help. Within seconds, There will always be patients not been there, had I not had the room filled, and minutes later, and families who are considered medical training, had I not spo when the ICU team showed up, I high maintenance, challenging, ken up: my parents, sleepy because stood back, a daughter again or both by health care providers. it was by then late at night, snug In retrospect, what is most Among them are a few with evi- gled up together at the top of the interesting is how much more dent mental illness, but most are gurney, my mother resting her comfortable I felt performing an simply trying their best to under- head against my fathers chest, intimate procedure on my father stand and manage their own or their eyes closed, their faces re- than demanding the attention of their loved ones'illness. That we laxed. His systolic blood pressure, the professionals assigned to care sometimes feel besieged or irri- usually 130, dropping to 80 and for him. Abiding by the unspoken tated by these advocates speaks then 70. The monitors turned off rules of medical etiquette, I had to opportunities for improvement or ignored. The lights dim. A short quieted my internal alarms for in both medical culture and the nap and they'd feel better. A lit more than 2 hours. Instead, I had health care system. Culturally, we tle rest and maybe it would be considered how doctors and nurs- could benefit from a lens shift time to go home es feel about and treat so-called toward seeing more-vocal patients Disclosure forms provided by the author pushy or"difficult"families, and and families as actively engaged at neim. org. are available with the full text of this article as a result I had prioritized want- in their health care, presenting ing us to be seen as a"good pa- new, potentially important infor- From the Department of Medicine, Divisio tient"and "good family"over be- mation, and expressing unmet Francisco. san francisco ing a good doctor-daughter care needs. At the systems level Do:101056/ NEJMp1303057 Although many physicians we need to both count (using copyright e 2013 Massachusetts Medical Society N ENGLJ MED 369; 9 NEJM. ORG AUGUST 29, 2013
n engl j med 369;9 nejm.org august 29, 2013 PERSPECTIVE 797 same as other rectal exams — and also completely different. Luckily for me, my father was a doctor too. When I asked my crazy question, he smiled. “Kid,” he replied, “do what you have to do.” I found gloves and lube. I had him roll onto his side. And afterward, I took my bloody gloved finger out into the hallway to prove my point. I realize that walking to the nurses’ station holding aloft one’s bloody, gloved hand is not an optimal tactic from a professionalism standpoint — but it worked. A nurse followed me back into my father’s room, saw my panicked mother holding a bedpan overflowing with blood and clots, and called for help. Within seconds, the room filled, and minutes later, when the ICU team showed up, I stood back, a daughter again. In retrospect, what is most interesting is how much more comfortable I felt performing an intimate procedure on my father than demanding the attention of the professionals assigned to care for him. Abiding by the unspoken rules of medical etiquette, I had quieted my internal alarms for more than 2 hours. Instead, I had considered how doctors and nurses feel about and treat so-called pushy or “difficult” families, and as a result, I had prioritized wanting us to be seen as a “good patient” and “good family” over being a good doctor-daughter. Although many physicians would have made different choices than I did, the impetus for my decisions lay in a trait of our medical culture. When we call patients and families “good,” or at least spare them the “difficult” label, we are noting and rewarding acquiescence. Too often, this “good” means you agree with me and you don’t bother me and you let me be in charge of what happens and when. Such a definition runs counter to what we know about truly good care as a collaborative process. From the history that so often generates the diagnosis to the treatment that is the basis of care or cure, active participation of patients and families is essential to optimal outcomes. There will always be patients and families who are considered high maintenance, challenging, or both by health care providers. Among them are a few with evident mental illness, but most are simply trying their best to understand and manage their own or their loved ones’ illness. That we sometimes feel besieged or irritated by these advocates speaks to opportunities for improvement in both medical culture and the health care system. Culturally, we could benefit from a lens shift toward seeing more-vocal patients and families as actively engaged in their health care, presenting new, potentially important information, and expressing unmet care needs. At the systems level, we need to both count (using specially designated sections of the medical record) and reward (through diagnostic and billing codes) the time that providers spend talking to patients and families. I’ll never know whether such changes would have altered my behavior or that of the medical staff on the night of my father’s massive intestinal bleed, and fortunately we all acted in time. I do know that 8 years later, the most vivid image I have of that night is not my father wobbling in the bathroom surrounded by cold, hard tile and angular metal structures, or a mustard yellow bedpan filling with bright red blood. The image is this, a worst-case might-have-been scenario had I not been there, had I not had medical training, had I not spoken up: my parents, sleepy because it was by then late at night, snuggled up together at the top of the gurney, my mother resting her head against my father’s chest, their eyes closed, their faces relaxed. His systolic blood pressure, usually 130, dropping to 80 and then 70. The monitors turned off or ignored. The lights dim. A short nap and they’d feel better. A little rest and maybe it would be time to go home. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Department of Medicine, Division of Geriatrics, University of California, San Francisco, San Francisco. DOI: 10.1056/NEJMp1303057 Copyright © 2013 Massachusetts Medical Society. “Good” Patients and “Difficult” Patients
