“Good” Patients and “Difficult” Patients — Rethinking Our Definitions
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 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.
The Register's Editorial: Why tie insurance to jobs?
UPS continues the trend of employers cutting costs
In many households, one spouse buys health insurance through a job for the entire family. Now United Parcel Service Inc. has announced it intends to cut this coverage for working spouses of nonunion employees next year. About 15,000 spouses will need to obtain coverage through their own jobs.
The change will not affect those spouses who cannot get their own coverage because their employers do not offer it or the families of about 250,000 UPS workers who belong to unions.
A UPS spokesman said the change is necessary to keep costs down. Companies certainly can save money by no longer subsidizing health insurance for employees’ husbands and wives. That trend predates passage of the Affordable Care Act, and saving money is why such a policy is becoming more common.
According to one survey, about 6 percent of companies with more than 500 workers exclude spouses from coverage if that individual can obtain it elsewhere. That’s a rate that has doubled in recent years. Many workers now pay an additional monthly charge simply to have a spouse on the family plan.
ObamaCare's architects reap windfall as Washington lobbyists
- 08/25/13 12:06 P
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ObamaCare has become big business for an elite network of Washington lobbyists and consultants who helped shape the law from the inside.
More than 30 former administration officials, lawmakers and congressional staffers who worked on the healthcare law have set up shop on K Street since 2010.
Major lobbying firms such as Fierce, Isakowitz & Blalock, The Glover Park Group, Alston & Bird, BGR Group and Akin Gump can all boast an Affordable Care Act insider on their lobbying roster — putting them in a prime position to land coveted clients.
“When [Vice President] Biden leaned over [during the signing of the healthcare law] and said to [President] Obama, ‘This is a big f'n deal,’ ” said Ivan Adler, a headhunter at the McCormick Group, “he was right.”
“When [Vice President] Biden leaned over [during the signing of the healthcare law] and said to [President] Obama, ‘This is a big f'n deal,’ ” said Ivan Adler, a headhunter at the McCormick Group, “he was right.”
Veterans of the healthcare push are now lobbying for corporate giants such as Delta Air Lines, UPS, BP America and Coca-Cola, and for healthcare companies including GlaxoSmithKline, UnitedHealth Group and the Blue Cross Blue Shield Association.
Ultimately, the clients are after one thing: expert help in dealing with the most sweeping overhaul of the country’s healthcare system in decades
Workers facing the thorny problems of healthcare and retirement
Are Americans best served by relying primarily on the private sector for health coverage and for benefits in their sunset years? Experts' opinions vary.
David Lazarus
4:02 PM PDT, August 29, 2013
| advertisement |
Like most employers, Trader Joe's is grappling with how to look after the well-being of its workers amid difficult financial circumstances.
In May, the head of the privately held Monrovia company, with stores nationwide, sent a confidential memo to employees notifying them of changes to their health coverage, retirement program and wages.
"In these increasingly complex times, it has become necessary to relook at our programs," wrote Dan Bane, the chief executive and chairman. "We do not do this review lightly."
He pledged to reduce workers' healthcare costs 10% for the remainder of the year while the company determines its response to changes under the Affordable Care Act.
Bane said Trader Joe's would scale back its contribution to employees' retirement plans, though the company's contribution would remain generous by industry standards. He also set new limits on employee raises.
A Trader Joe's spokeswoman declined to comment on the memo, which was provided to me by a company employee.
As Labor Day approaches, it's worth noting that the challenges faced by Trader Joe's are shared by most U.S. businesses, large and small.
Meeting workers' present and future social-welfare needs has become a crucial and highly complex issue as healthcare costs continue to outpace inflation and secure retirements grow increasingly out of reach for many people.
These issues highlight the vulnerabilities of a system in which people's social safeguards are tied to their employment and workers are largely fending for themselves in financial markets.
Put succinctly: Are Americans best served by relying primarily on the private sector for health coverage and for benefits in their sunset years? Or would it make more sense to pool our collective risks and look to a greater role for public programs such as Social Security and state pension plans in providing safety nets?
"If you start with the premise that Trader Joe's doesn't want to be a bad guy but can't afford these benefits — and you see that being replicated over and over again with other companies — it necessitates looking at some non-private-sector responses," said Bob Bruno, a professor of labor and employment relations at the University of Illinois.
Not all economists would agree with that.
Anthem's Maine network plan draws scores of critics
Posted: August 29
Updated: Today at 12:22 AM
Updated: Today at 12:22 AM
At a central Maine hearing, state officials are told the insurance setup with Maine Med will cause financial and physical hardship.
AUBURN – Hundreds of central Maine residents turned out for a public hearing Thursday to criticize the pending partnership between Anthem Blue Cross and Blue Shield and the parent company of Maine Medical Center.
The network will include 32 of the state's 38 hospitals, excluding only the three hospitals owned by Central Maine Healthcare of Lewiston, Parkview Adventist Medical Center in Brunswick, York Hospital in York and Mercy Hospital in Portland.
Anthem and MaineHealth already have approval from the Maine Bureau of Insurance for the plan to partner on the health insurance exchange. Their provider network and pricing have also been approved.
http://www.pressherald.com/news/Hundreds-of-Mainers-criticize-Anthem-MaineHealth-partnership.html
Hundreds at hearing rip Anthem state insurance plan that excludes three hospitals
Posted Aug. 30, 2013, at 6:10 a.m.
AUBURN, Maine — For more than three hours, they were angry and they were heard.
Hundreds of people packed Kirk Hall at Central Maine Community College on Thursday night for a comment session on Anthem Blue Cross and Blue Shield’s controversial new insurance proposal that would force individual policy holders into a network with MaineHealth providers.
Under the plan, patients who bought individual policies after March 2010 could no longer see doctors at Central Maine Medical Center in Lewiston, Bridgton Hospital or Parkview Adventist Medical Center in Brunswick.
Speakers ripped Anthem and MaineHealth for proposing it and the state for considering it.
They questioned the increased drive times, abandoned long-term patient-doctor relationships, increased waits, risk of losing local jobs and having choice taken away.
Mary Dempsey said her mother, who has battled cancer, could have to leave CMMC, home to the Patrick Dempsey Center for Cancer Hope & Healing that her son helped found.
“My mother is a very strong lady, and to see her break down in tears because she might have to go somewhere else is not acceptable,” Dempsey said. “Not acceptable.”
Daniel Rausch, a medical oncologist, said CMMC is the only Lewiston hospital that offers radiation therapy. He’d have to tell sick patients to drive five days a week to Portland or Augusta.
“I don’t know how that qualifies as comparable care,” he said.
Allan Ingraham, recently retired head of vascular surgery at the CMMC heart center, said he was “disgusted and disappointed” that the state’s second-largest metropolitan area was getting such short shrift.
“To coin one of the governor’s famous statements, you should pass out some Vaseline to everybody in this area,” he said. “It is ignoring all of the achievements that have happened at Central Maine Medical Center.”
The state’s first breast care center. The state’s first helicopter service.
Comment after comment drew hoots and applause. Many CMMC employees and supporters in the audience wore lime-green “Please Keep Care Local” T-shirts. Another hundred people who couldn’t fit in the auditorium waited outside in the hall.
The Rev. Naomi King drove her electric wheelchair to the front of the packed room and introduced herself as Stephen King’s daughter. Her family, she said, has Anthem policies.
After her father’s horrific car accident in 1999, “it was Bridgton Hospital that stabilized him and Central Maine Medical Center that treated him,” King said. These changes would affect people who “helped him walk again and write great books and tell great stories.”
She said she’d put off some care if forced to travel 90 minutes from Western Maine to see a doctor.
“It is going to increase suffering in our community, enormously and economically,” King said.
Bill Young, CMMC’s former, longtime CEO, said he was “perplexed” that the state was considering the plan but understood why MaineHealth, Maine Medical Center’s parent, wanted it.
In the 1970s, CMMC was small and Maine Med was huge. People drove there for specialized care. In the mid-1970s, Young said, CMMC made a concerted effort to grow, and every specialist hired drew patients away from Maine Med.
Posted:Today
Updated: 12:25 AM
The diocese finally responded to mounting criticism of the way 34 residents of the unit – 28 of them MaineCare recipients – are being discharged to make way for a $750,000 to $1 million renovation, without the promise of being allowed to return.
David Twomey, chief financial officer for the diocese and Bishop Richard Malone's delegate on St. Joseph's board of directors, said it's uncertain whether St. Joseph's will accept MaineCare residents when the renovated unit opens in 2014.
http://www.pressherald.com/news/st_-joseph-renovating-to-whittle-mainecare_2013-08-30.html
Updated: 12:25 AM
The Portland diocese says the care facility it sponsors needs more private payers to stay financially healthy – bad news for some facing discharge.
PORTLAND – The Roman Catholic Diocese of Portland acknowledged Thursday that the assisted-living unit at St. Joseph's Rehabilitation & Residence will be renovated to attract more private-pay residents and help offset the cost of residents covered by MaineCare.The diocese finally responded to mounting criticism of the way 34 residents of the unit – 28 of them MaineCare recipients – are being discharged to make way for a $750,000 to $1 million renovation, without the promise of being allowed to return.
David Twomey, chief financial officer for the diocese and Bishop Richard Malone's delegate on St. Joseph's board of directors, said it's uncertain whether St. Joseph's will accept MaineCare residents when the renovated unit opens in 2014.
http://www.pressherald.com/news/st_-joseph-renovating-to-whittle-mainecare_2013-08-30.html
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