Before undergoing many health care interventions, patients are asked to give their informed consent. In most cases, it represents a mere formality. The patient has come to the healthcare facility for the express purpose of undergoing the test or treatment, and after a quick explanation, the patient signs the consent form. But not always – sometimes patients elect not to go through with it.
I know a woman in her late 70s, a highly accomplished health professional with a long and remarkably distinguished record of career achievement, who was recently diagnosed with cancer. Her physician advised a complete diagnostic workup to determine how far the disease has spread, to be followed by courses of radiation and chemotherapy. A vast and sophisticated medical armamentarium, unprecedented in the history of medicine, stands at the ready to take the full measure of her disease and then beat it back.
Yet after her oncologist carefully explained the benefits, risks, and alternatives to the recommended course, she declined to proceed further. Instead of launching into an arduous medical regimen, she has chosen to focus the remainder of her time and attention elsewhere, on matters outside of medicine. Why?
On hearing such a story, some of my medical colleagues question the patient’s soundness of mind. Could she be depressed? Might she be in the early stages of dementia? Could she have simply failed to grasp the full gravity of her situation? To them, the failure to take advantage of the wonders of modern medicine smacks of irrationality. The solution? Her physicians need to sit her down again and explain the situation more clearly. Should this fail to elicit her consent, perhaps a psychiatry consult would be in order.
Yet to those who know her, these explanations are unsatisfactory. We cannot attribute her decision to a lack of intelligence or sophistication about healthcare. She has spent her entire career in the field, and helped to care for countless patients with life-threatening conditions, many of whom eventually died. She knows what the care of such patients looks and feels like from firsthand experience. She understands the risks of declining further treatment at least as well as many of the health professionals caring for her.
The late Dr. C. Everett Koop was the most revered Surgeon General in history, perhaps even the most revered Cabinet member. His calling card—indeed, his claim to fame – was his integrity. A Reagan appointee, he acted as though he reported to no one other than the American people and his own conscience. His penchant for candor and scientific independence fueled the federal government’s groundbreaking steps to raise public awareness about HIV/AIDS at a time when the tendency was to demonize and diminish. He resisted incessant political pressure and refused to take positions or produce data that he knew to be false.
This drew strong support from both sides of the aisle, and even his detractors never questioned his honesty. (Exhibit A: The two authors of this posting, whose political views have little else in common other than respect for strong, independent-minded politicians.)
Dr. Koop’s legacy stands in sharp contrast to the eponymous award dispensed by The Health Project, whose committee members have turned their back on their founder. The last thing Dr. Koop would have expected is to see is *his* award bestowed upon people who know that they don’t deserve it. The 2012 award was given to three recipients for work done in Nebraska: a vendor that claims wellness programs don’t even have to exist to save money, an outfit that can’t even spell the name of its own founder, and a state employee benefits plan that is under investigation for sky-high administrative costs.
Among the extravagant statements that formed the basis for the award (like claiming more than $20,000 in savings for every person who reduced their risk factors for a year, even though per-person spending is only $6,000), they claimed to have made 514 “life-saving catches” on employees with otherwise undetected cancer. This data was obviously wrong to begin with — that cancer rate would have been at least 40 times greater than Love Canal’s. Nonetheless, it sure sounded good, and the Governor of Nebraska himself was all-in too, so an award was issued.
It’s fitting that this year’s ACOG meeting was held in New Orleans, because navigating the 2013 ASCCP Pap Smear Management Guidelines presented there feels like trying to make my way through the Mississippi bayou. The guidelines include 18 different algorithms encompassing almost any combination of pap and HPV abnormality we docs are likely to encounter among our patients. But all tributaries lead to the same place, where we achieve optimal reduction in cervical cancer with minimal harm.
Cervical cancer prevention is a process with benefits and harms. Risk cannot be reduced to zero with currently available strategies, and attempts to achieve zero risk may result in unbalanced harms, including over treatment. …optimal prevention strategies should identify those HPV-related abnormalities likely to progress to invasive cancers while avoiding destructive treatment of abnormalities not destined to become cancerous. Adopted management strategies provide what participants considered an acceptable level of risk of failing to detect high-grade neoplasia or cancer in a given clinical situation.
I’m not even going to try to spell out everything in the guidelines, which come from the American Society of Colposcopy and Cervical Pathology (ASCCP), except to say that they represent further movement away from aggressive screening and treatment of pap smear abnormalities, especially in younger women, in whom treatment carries small but real childbearing risks. The guidelines are increasingly reliant upon HPV testing to determine who and how often to screen, and when to treat. They also acknowledge the role of testing for HPV 16 and 18 as a way to be sure that those women with adenocarcinoma of the cervix (which is less likely to show up as cancer on a pap smear) are identified and treated.
From the guidelines-
I had a patient this week that really screwed up his medical care when he experienced a predicted side effect of curative chemotherapy. Despite clear instructions and access to every number my partners, my staff and I have, including office, triage, cell, and answering service, he did not reach out. Day-by-day he lay in bed, as he grew weaker and multiple systems failed. No one contacted me. Finally, he sent an email to a doctor 3000 miles away, in California. That doc forwarded the email to me. I sent the patient to the hospital.
Did we rush to the emergency room, to salvage his life? Of course. Were there innumerable tests, complex treatments, multiple consults and an ICU admission? You bet. Did I patiently explain to him what was happening? Yes. Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor? Did I remind him what I expect from him and what he can expect from me? You better believe it, I was really pissed!
The practice of medicine for most doctors is fueled by a passion to help our fellowman. This is not a vague, misty, group hug sort of passion. This is a tear-down-the-walls and go-to-war passion. We do not do this for money, fame, power or babes; we do this because we care. Without an overwhelming desire to treat, cure and alleviate suffering, it would not be possible to walk into an oncology practice each morning. Therefore, just as we expect a lot of ourselves, we darn well expect a lot out of our patients.
Dear Ms. Jolie,
Thank you for your bravery and leadership in the battle against breast cancer. In a small way, through my patients, I understand the challenge and pain it took not only to undergo prophylactic mastectomies, because you carry the BRCA1 cancer gene, but also to reveal this deeply personal part of your life to the world (NYT, 5/14/13; My Medical Choice). You had no obligation to open your soul; your selfless act leaves those of us that treat the dread disease, in awe.
Your action will save more lives than all the patients I could help, even if I were to practice oncology for hundreds of years. By opening up the conversation, by educating and by boldly stating that beauty, strength and health are possible, even when radical choices are made, you open up life saving opportunities for many. Mastectomies may not be the answer for all women, but the very idea that cancer can be prevented, instead of simply waiting in fear, is earth shattering.
Women and men will now better understand the genetic risks for cancer, be exposed to the different options which are available in the prevention of cancer and know that it is possible, whatever path is taken, to continue with full lives. You have made it easier for patients, their families and physicians to have vital discussions.
The announcement of your surgery coincides with a critical legal battle, the deliberations of the United States Supreme Court regarding BRCA genetic testing. You have put pressure on the Court to find against Myriad Genetics Corporation in the company’s attempt to protect their expensive monopoly of the breast cancer genetic assay. Thus, the Court will have the opportunity to reduce the cost of testing, which as you note, can run thousands of dollars per patient.
Your action changes the war against breast cancer. You have prevented the suffering of thousands and given them the opportunity to go on with life and be part of what is truly important, families and communities.
Thank you for your remarkable sacrifice.
James C. Salwitz, MD
James C. Salwitz, MD is a Medical Oncologist in private practice for 25 years, and a Clinical Professor at Robert Wood Johnson Medical School. He frequently lectures at the Medical School and in the community on topics related to cancer care, Hospice and Palliative Medicine. Dr. Salwitz blogs at Sunrise Rounds in order to help provide an understanding of cancer.
A woman’s mother dies at age 56. A blood test is done. The woman finds out she has a genetic pre-disposition to cancer. She takes what action she thinks she needs to take. A familiar story repeated over and over again every day. I’ve met many women who have made this choice. While not “normal”, it is a familiar situation. These women’s difficult choices go unheralded. But not Angelina. She has a voice and she’s not afraid to use it.
I am of two minds about Ms. Jolie’s announcement. Unlike double mastectomies for ductal carcinoma in situ (DCIS), which isn’t necessarily a cancer and can be treated with a lumpectomy, BRCA1 gene mutations can’t be treated any other way. Unless I hear differently from my breast surgeon friends, I’d say she probably did the right thing. Her decision to talk about it is probably encouraging to women who have or will have to make that choice. It raises awareness of the gene mutation. It puts breast cancer on the front page of the New York Times. Again.
Here’s my problem: double mastectomy is not a benign procedure. Ms. Jolie seems to have had a remarkably easy time of it. Yes, she says she was right back to her normal life soon after, but since Jolie’s life is not normal that’s hard to generalize. The truth is there is significant pain involved, a long period of waiting while the tissue expanders do their work, then there’s further procedures for the implants, which can develop capsules around them, or rupture, or get infected. If Angelina had chosen breast reconstructive surgery there would be the risk of the flap losing blood flow, multiple drains, overnight stays in recovery rooms or ICUs, and many many surgeries for revision, nipple creation, etc. And the results are not always beautiful. I understand that it is not Ms. Jolie’s role to scare people, but to encourage them. I would just warn against falsely rosy expectations.
I am not trying to discourage double mastectomy. Sometimes it is necessary. I do think that people who have extraordinary access to public attention must pay extraordinary attention to what they say. I wish Angelina all the best for a complete, and beautiful, recovery.
Shirie Leng, MD is a practicing anesthesiologist at Beth Israel Deaconess Medical Center in Boston. She blogs regularly at medicine for real.
The exponential growth in wellness programs indicates that Corporate America believes that medicalizing the workplace, through paying employees to participate in health risk assessments (“HRAs”) and biometric screens, will reduce healthcare spending.
It won’t. As shown in my book Why Nobody Believes the Numbers and subsequent analyses, the publicly reported outcomes data of these programs are made up—often to a laughable degree, starting with the fictional Safeway wellness success story that inspired the original Affordable Care Act wellness emphasis. None of this should be a surprise: in addition to HRAs and blood draws, wellness programs urge employees to go to the doctor, even though most preventive care costs more than it saves. So workplace medicalization saves no money – indeed, it probably increases direct costs with these extra doctor visits – but all this medicalization at least should make a company’s workforce healthier.
Except when it doesn’t — and harms employees instead, which happens altogether too often.
Yes, you read that right. While some health risk assessments just nag/remind employees to do the obvious — quit smoking, exercise more, avoid junk food and buckle their seat belts — many other HRAs and screens, from well-known vendors, provide blatantly incorrect advice that can potentially cause serious harm if followed.
Jennifer Stinson was a nurse at The Hospital for Sick Children (SickKids) in Toronto who enjoyed brainstorming new ideas for improving care, especially for the kids with cancer she treats. But even as she gained status by getting her PhD and becoming a clinician scientist, she came up against persistent bureaucratic and organizational barriers to innovation.
Stinson’s challenge is common at big organizations, but overcoming bureaucracy and breaking down silos is especially critical in healthcare. To tackle these obstacles at SickKids, CEO Mary Jo Haddad in 2010 elevated innovation to a “strategic direction,” and engaged Innosight to help devise a full system needed to spur innovation. The resulting system has three major components:
- An Innovation blueprint detailing the types of innovations the organization wants to encourage. SickKids prioritized encouraging doctors, nurses and clinicians to look for unmet needs they could address, rather than wait for solutions from IT or top management. That required creating a focus group with 25 front-line healthcare workers to discover and catalog key “jobs to be done” (like reducing the length of hospital visits), surveying all 5,000 employees, and training most of them on how to integrate the innovation system into their daily practices.
- An innovation pipeline to reliably take ideas from concept to reality. This involved establishing a new 18-member Central Innovation Group of leaders from different areas of the hospital, a team that was tasked with prioritizing and advancing ideas and projects through various stages. The team helped innovators test prototypes, make adjustments, and then scale to a wider population.
- An innovation culture that features the right people, in the right roles, speaking a common language of innovation. A key enabler of this culture was the establishment of a $250,000 Innovation Fund to provide seed money for promising ideas. Now, instead of being stalled by permission hurdles that suppress initiative, promising new ideas could be funded, fast-tracked and prototyped.
Consider how the new system helped Stinson bring a transformative innovation to life. Every year at SickKids, thousands of children are battling various forms of cancer. It’s vital that they keep accurate diaries tracking their pain, but if it’s not done daily the data are virtually worthless. Typically these diaries must be filled out by hand, an annoying task that children with cancer aren’t motivated to do. The result is poor reporting and suboptimal pain management.
True to his proudly claimed Chicago newspaperman roots, famed movie critic Roger Ebert remained a writer literally up until the moment he died.
“A lot of people have asked me how could Roger have [posted] that column one day and then die the next? Well, he didn’t know he was going to die the next day, and we didn’t expect him to. We expected him to have more time. We were going to go to home hospice. We thought we would take him home, let him enjoy that time, and let him get stabilized. I’ve got to tell you: I really thought he was just tired and that he was going to get better.”
“I want people to know that Roger was still vibrant right up to the end,” his wife, Chaz, told Ebert’s friend, TimeOut Chicago columnist Robert Feder, before an April 7 memorial service. “He was lucid – completely lucid – writing notes right up to before the moment of death,” she said. Only later did it occur to Chaz that Roger had begun signing his initials and dating many of the notes he wrote at the end. “Now I wish I had saved them all,” she said.
It was as if a man who had refused for years to be defined by illness refused to be defined even by death. Ebert spoke openly of being a recovering alcoholic (he stopped drinking in 1979), and when cancer cost him part of his lower jaw in 2006, cruelly taking away his ability to either talk or eat, he did not hide, wrote colleague Neil Steinberg in the Sun-Times, Ebert’s home newspaper. Instead, he forged “what became a new chapter in his career, an extraordinary chronicle of his devastating illness” written “with characteristic courage, candor and wit, a view that was never tinged with bitterness or self-pity.”
Ebert, wrote Roger Simon in tribute, was “a newspaperman’s newspaperman.” As a former Chicago newspaperman myself (at that other paper, across the street), I’m sure Roger Ebert continued to write even after his death.
It’s just that he hasn’t found a way, yet, to send out his copy.
As a long-time reporter for the Chicago Tribune, Michael L. Millenson learned the famous fact-checking fanaticism credo of Chicago journalism: “If your mother says she loves you, check it out.” He is currently president of Health Quality Advisors LLC of Highland Park, IL.
Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”
Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.
I have cancer that is incurable, aggressive, and has negligiblesurvival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.
I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.