Fixing Health Care
“Ira, the nurse at Mom’s Alzheimer’s unit just called. They sent her to the hospital yesterday afternoon — said that she’d been vomiting and there was nothing else they could do. They didn’t even call me! Damn it! She even hates to be touched and now she is strapped to a gurney in some emergency room, getting X-rays and I Vs.”
Despite a lousy cell phone connection, I could hear tears within the tremble of my friend Michelle’s voice. I knew something was wrong from the number on my cell phone’s display, even before I flipped it open. Michelle would never call my cell on a weekday morning unless something bad had happened. Now, she hadn’t paused to say hello, and I understood from her pace and anxious tone that she’d been talking to me before I’d answered the phone.
“I’m just sick about it. I’m not mad at you, Ira, but I did everything you suggested
and none of it worked. Naturally, her own doctor’s not on call. I’m still trying to find the doctor who is.
Michelle is married to a close boyhood friend of mine, and my wife and I have been good friends of theirs for many years. Michelle owns and directs an executive search firm based in Manhattan. She is meticulous and exacting in her business and personal life, as confident and assertive as anyone I know. Michelle is also an accomplished artist with a keen aesthetic sense that extends to cooking, home decor, and adventurous travel. She is an attractive brunette who is nearly a decade younger than her husband and I. Her disciplined commitment to eating right and a regular, strenuous exercise program keep her fit and able to enjoy long hours.
Over the eleven years from the earliest onset of her mother’s cognitive decline, to the day of Michelle’s call, she and I often talked about her mother’s condition and she sought my advice in planning her mother’s health care. Michelle felt a keen responsibility for her mother’s well-being and was determined for her to receive the best possible care. We usually spoke informally over dinners with our spouses — parent care is a
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common topic of dinner conversations among couples our age — but sometimes she brought a list of questions and had a pen in hand as we more formally considered details of her mother’s functional abilities, emotional well-being, living situation, and medical plans. As her mother’s dementia accelerated and she became progressively debilitated, Michelle and I occasionally spoke by phone in the evening, discussing changes in her mother’s condition or the pros and cons of various medications or treatments.
Her mother, Jeanne Gider, was a remarkable individual. She was a retired physician who had come to medicine as a second career. Born in Brooklyn in 1929, Jeanne Goldberg grew up during the Depression and the lean years of World War II. At age thirteen she wrote in her diary that she wanted to become a doctor. However, limited family finances and her gender led to nursing school instead. She became a public health nurse, a nursing instructor, and then earned a master’s in public administration from New York University. She married Leo Stuhl, an agricultural economist who had worked on the Aswan Dam, but was subsequently blacklisted from government jobs during the McCarthy era.
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The couple moved to Toledo, Ohio. Leo became a traveling salesman of toys and confections, and Jeanne became the director of nursing at Flower Hospital. In 1955 Leo became ill with cancer. Surprisingly, while he underwent cancer treatments that might have rendered him infertile, Michelle was conceived. Leo Stuhl lived to see his daughter born and grow to age two. But Michelle’s father never regained his health and died in 1959.
Suddenly a young widow, Jeanne and little Michelle moved to Miami to be closer to Leo’s aging mother. Jeanne took a job as a technician in a local medical laboratory. It wasn’t long before the supervising physician of the laboratory recognized Jeanne’s intellect and ambition, and began encouraging her to go to medical school. Her family was able and eager to help. Applying to medical school in 1965 as a woman who was nearly a decade older than most applicants seemed a herculean feat. Against long odds, she was accepted — one of only four women in her University of Miami Medical School class — and at age thirty-two she followed her long-held dream.
After completing her training in 1971, Jeanne remarried and went on to become a busy family practitioner and respected
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member of the south Florida medical community. As a family doctor, Jeanne Gider was skilled in helping people plan for the end of life. She even served for several years as a volunteer member of the board of directors of a local hospice program. Michelle said that her mother had long been vocal with her about what she personally wanted — and, mostly, didn’t want — as she was dying.
During years of practice. Dr. Gider had seen many difficult deaths that she thought were the consequences of doctors and family members trying to prolong life at all costs. She made Michelle promise not to allow that to happen to her. After her second marriage ended in divorce, she prepared an advance directive document that named Michelle, her only child, as her authorized medical decision-maker. In the document, Jeanne specified that if she had a life- threatening illness and was too ill to speak for herself, she did not want any invasive measures to prolong her life: no surgery, no CPR, no mechanical ventilation, no artificial nutrition and hydration.
In 1984, Jeanne was in a serious car accident in which she suffered a concussion. After months of outpatient rehabilitation she was able to function well enough to
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work as a medical consultant and lecturer to hospitals for several years. However, she never returned to providing direct clinical care. Then, in 1991, at age sixty-two, she was diagnosed with colon cancer and underwent surgery. Although she was apparently cured of her cancer, her recovery coincided with an accelerated progression of dementia. For the next few years, while the disease was still in the early and middle stages, Jeanne was able to feed and dress herself. During this period, in one of our conversations, I suggested to Michelle that she make an appointment with her mother’s doctor specifically to develop contingency plans for foreseeable future problems. She thought it was a great idea.
At the appointment a few weeks later, Michelle and her mother’s internist sat in his office and reviewed Jeanne’s advance directive. Michelle discussed the conversations she had had with her mother. The doctor readily agreed that the sole focus of her mother’s care would be her comfort and quality of life. He understood that if and when a complication of her illness occurred, it was Michelle’s intention to allow her to die naturally. Michelle was explicit that her mother was not to be hospitalized without her permission. Again, the doctor fully
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agreed. He placed Michelle’s contact information — including her cell phone, pager, and home numbers — prominently in her mother’s chart. Michelle told me that she saw the numbers on a face sheet within the manila cardboard folder that held her mother’s clinical records.
The next time we spoke, Michelle thanked me for making the suggestion. She felt confident having her mother’s doctor on board with her mother’s wishes.
Because her mother wanted to stay in her own home in south Florida for as long as possible — and because they had the financial means to do so — for nearly eight years Michelle hired aides and coordinated her mother’s home care. During those years, she says, “Mom was able to participate in the world” and enjoy most days. The pace of her decline quickened, and by 1999 Jeanne required around-the-clock supervision. In addition, at times she became agitated with apparent paranoid delusions. Michelle carefully evaluated every specialized dementia care facility in the region and, after frantic weeks of waiting lists, her mother was admitted to the one she felt was best. (Michelle once quipped that it was as hard for her mother to get into a good nurs-
ing home as it had been to get into medical school.)
Admission to the specialized nursing home came just in time but proved to have been worth the wait. Within months, Jeanne was barely communicating, completely disoriented, and in diapers. She spent most of her days sitting in a chair in the day room. She no longer recognized Michelle or anyone else. She was mostly placid, but recoiled from being touched. Unless the nurse aides who knew her well were oh-so- gentle and soothing in their approach, she would recoil and become agitated when they tried to bathe her or provide daily mouth care.
On the day of her frantic call, despite all of Michelle’s meticulous efforts — and my supposedly expert guidance — her mother was a captive, tied down and undergoing a battery of unwanted blood tests, X-rays, and treatments. Indeed “battery” seemed the right word.
What should she do now?
My advice was simple, though not easy. I told her to fly down to Miami immediately. “Until you’re convinced she’s safe, do not leave your mother alone.” I was speaking literally and she knew it.
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Late that evening, Michelle called from her mother’s hospital bedside. She had caught an afternoon flight from New York and touched down about eight p.m. Her mother was much as she had feared — bruised from the IVs and blood tests, with cotton restraints tied around each of her ankles and anchored to a bedpost. She was sedated but, when aroused, obviously confused and visibly uncomfortable.
“Get this,” Michelle plaintively exclaimed over the phone, “I reached the doctor on call as I was packing to leave for the airport. He said they had to hospitalize her because she has an obstructed bowel and might have cancer. So I asked him, ‘What the hell are you going to do if she has cancer?’ and he said, ‘Well, she’d need surgery.’ I told him in no uncertain terms that under no circumstances would I consent to any surgery for my mother. I demanded that my mom be made comfortable and hinted strongly that I was willing to sue him and the nursing home if he didn’t follow my instructions. He sounded surprised, but also relieved, ‘Oh, okay, we’ll focus on her comfort, and I guess we should arrange for hospice,’ he said.”
He got that right. In fact, there are ways of controlling the discomfort bowel obstruc-
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tions cause without surgery, but doing so would take palliative care expertise of the sort that a hospice program provides.
At Michelle’s direction, and with the on- call doctor’s blessing, her mother was transferred from the hospital to a hospice inpatient facility across the street. For the last ten days of her life, there were no restraints on her arms or legs. She was in no distress, thanks to sufficient medication for pain and anxiety. Her mouth was moist and her skin was clean, warm, and dry. The hospice staff treated Jeanne Gider tenderly, respected her dignity, and enabled her to die peacefully.
The story would have been sobering and instructive had it ended there, but it didn’t.
A month after Jeanne died, Michelle received a bill for her mother’s twenty- three-hour hospitalization. It totaled $22,402. (Adjusted for inflation, the amount would exceed $27,000 in 2012.) The bill included $6,750 for twenty-two separate blood tests, $1,077 for three electrocardiograms, $4,187 for a CAT scan of her head, $776 for three X-rays of her abdomen, $296 for a chest X-ray, and $3,246 for three ultrasound tests.
Michelle was stunned and called the billing department to complain. Anger, which
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had been smoldering within her grief, threatened to erupt. The clerk went over the itemized statement and assured her that the charges were correct. Michelle first told the billing clerk and then a supervisor that the bill was outrageous, explaining that the tests and treatments her mother received were unauthorized and unwanted. Michelle was spoiling for an argument, but there was none to be had. The customer service specialist calmly let Michelle know that she needn’t worry. “This will not be a problem,” she said. “Medicare will pay.”
Not a problem?
What happened to my friend and her mother is not just one story. Their experiences are emblematic of the health care system we have. What makes Jeanne Gider’s dying stand out for me is the lengths to which Michelle had gone to prevent these needless, intrusive medical treatments and how, in the end, it hadn’t worked. The story of what happened to her mother is a cautionary tale for all of us who have aging parents or who happen to be aging ourselves.
Notice that in this saga there was no malevolence on anyone’s part. Despite good intentions and the careful planning Michelle
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had done, when her mother developed abdominal pain and vomiting, thereby categorically shifting from being “chronically ill” to “acutely ill,” the acute care system snapped into action. As if a valve had opened, a cascade of events was released. No one stopped to check her advance directive or call Michelle, her legal decision-maker. Instead, clinical protocols and patterned responses of nurses, doctors, health care facilities, and teams were set in motion, forming a swift current that carried Jeanne Gider to the hospital. Doctors and nurses with long-standing habits generated routine tests and instituted acute treatments. With practiced handoffs, Jeanne was passed from the nursing home staff to EMTs to emergency department staff, to the on-call physician internist and surgeon, and to the hospital nurses. Once unleashed, the current was difficult to stop. No wonder Michelle felt she was swimming upstream.
This tragic tale illustrates the systemic challenges we face and highlights the urgent need to revise care standards and redesign health care systems. We must do so in order to protect vulnerable patients — our parents, grandparents, spouses, brothers, and sisters. And we must do so to ensure that our children are not left in Michelle’s
predicament, struggling to protect their parents and feeling guilty for being unable to keep their promises to us.
Not every frail elder or dying person has as strong and sophisticated an advocate as Michelle. As they approach the end of life, people are at risk of suffering needlessly from lapses in communication, failures of coordination, and missing preparations for foreseeable crises. When things fall apart, often patients and their families don’t know what to do. Calling 911, while understandable, is not always the best answer.
As broken as our national and local health care systems are now, we may soon be nostalgic for these times. We are on the cusp of a national crisis that will affect every person in America. Like a tsunami in slow motion, demographic tides of frailty and physical illness are rising, not just “nationally” in some abstract sense, but in each of our own communities. You likely know people who are sick or frail who live just across the street or down the block or in your apartment building. Even today, there’s a good chance those people and their families are hard put to deal with their daily medical care. Many are also struggling to meet their basic needs. As hard as things are today, the crisis is merely beginning. It
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is time we developed plans to deal with it.
And we can. Today, we have the knowledge and expertise available to respond in effective ways. Many thousands of experiences like Jeanne Gider’s have provided data for researchers in public health, geriatrics, sociology, and palliative care to analyze and make sense of. We know where the cracks lie in our health and social architecture of caring. More important, creative researchers, advocates, and innovators within these fields have developed strategies for fixing the fractures.
A common assumption among politicians and social commentators is that budget woes are keeping us from providing the best possible care for people at the end of life. In reality, few people in medicine, sociology, or health services research who have studied the situation agree with that premise. In fact, our society has had the technical knowledge and professional expertise we need for some time. But knowing and doing are two different things. What is most worrisome today is that caring well for people through the end of life and supporting caregivers are still not on the national agenda. The clock is ticking along with 78 million baby boomers’ beating hearts, but the body politic isn’t listening.
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In 1997 the Institute of xMedicine published Approaching Death, a landmark report that surveyed all the available evidence pertinent to dying in America. Approaching Death cited widespread “errors of omission and commission” in end-of-life care. Studies found that pain was inconsistently assessed and often poorly treated. Communication around end-of-life planning and preferences often did not occur. Treatments were often given when there was little chance of success but every chance of increasing a patient’s distress. Reimbursement systems incentivized treating disease (“at all costs”), as did a legal system that placed physicians at more risk for doing too little than for doing too much. The Institute of Medicine described pervasive deficiencies in medical and nursing education. In its report the institute issued a call for dramatic improvements in clinicians’ training, as well as in health services and systems of care, and in community-based responses for people approaching the end of life.
Since Approaching Death was published, numerous professional associations and patient advocacy groups have joined the call to vastly improve — indeed to redesign — our nation’s medical and social systems to provide the safe, reliable, coordinated,
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individualized services to ill and elderly people and their families.
So far, it hasn’t happened. The dominant social response to illness and frailty remains purely medical. Once one has a diagnosis or two — bona fide physical and mental ailments — society will pay for treatments. That’s well and good. However, the diagnosis-driven, narrowly defined social response to people’s needs misses opportunities for preventing illness, alleviating distress, and enhancing people’s well-being. And the exclusively disease- and treatment- oriented nature of contemporary medicine causes dissatisfaction for patients and providers alike.
It is one of the reasons that doctors are burning out in unprecedented numbers. Physician satisfaction with their careers is at an all-time low. Rates of depression, drug abuse, and divorce are higher among physicians than the general public. Today’s doctors practice under the scrutiny of business managers, payers, quality committees, and regulators. They feel pressured to see too many patients in too little time. Although physicians tend to be cautious and conscientious by nature, in the United States malpractice suits are always in the back of their minds. In settings in which care is episodic
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and continuity difficult to assure, all of these factors — feeling pressured and being cautious, conscientious, and concerned about being sued — contribute to doctors’ decisions to order extra blood tests, CT scans, and MRI scans, “to be on the safe side.”
Patients, especially older patients, also feel rushed and are often left with the impression that their doctors have precious little time or attention for them. It is increasingly common for medical records to be electronic, and in many of the most modern medical centers, doctors spend more time looking at computer screens than at the people sitting in front of them.
People with chronic, life-threatening conditions commonly find that their care feels fragmented and that their doctors aren’t communicating with one another. When a patient sees a medical consultant or surgeon, at times key test results or scans aren’t available; sometimes tests must be repeated because results of even recent blood work or scans can’t be found. When patients ask about the chances of a new treatment working or how long they may have to live, their doctors may be evasive. Doctors who listen carefully, and who consistently answer questions fully, stand out as glowing exceptions in the opinions of
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many seniors. But they are uncommon in systems fixated on diagnosing and treating pathologies rather than people.
In the current systems and professional culture of medicine, planning, preventing, guidance, and counseling are ancillary and easily ignored. Insurers, Medicare, and Medicaid more readily pay for diagnosing and treating diseases than anything else that doctors do. If complications of treatments occur, these new problems (aka diagnoses) generate more tests and treatments, which are also paid for. Of late, Medicare has refused to pay hospitals the full costs of care for patients who are readmitted within a month of discharge for the same condition. But in general, the government and insurance companies have simply paid.
Like everyone else in the workforce these days, physicians are accountable for what they do. Rightly so. Unfortunately, what they are held accountable for has usually emphasized volume over quality. Physician economic productivity is measured in work RVUs, which stands for relative value units. RVUs accrue through both the time and the intensity or sophistication of specific services. Invasive procedures, such as operations, endoscopies, repairing lacerations, and reducing fractures, are assigned many
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more RVUs of service than visits to counsel patients and families through difficult, complex decisions or to help them cope with progressive, incurable conditions. Each physician’s RVUs are measured and a doctor’s output — per day, per month, and per year — can be compared to national benchmarks or local peers and used in performance reviews, yearly bonuses, and salary adjustments. Whether or not their own incomes are affected by how many RVUs they generate, doctors are aware that the more time they spend with patients in talking and counseling, the less revenue their practice generates.
While revenue can rise or fall, overhead tends to be fixed. Physicians in group practices particularly feel the weight of their practices’ “overhead,” which represents the livelihoods of the managers, nurses, lab techs, receptionists, secretaries, and billing clerks with whom they work. All things being equal, practices succeed when physicians see more patients per unit of time. Yes, doctors can get paid for home visits. And seeing patients in their homes is desirable in some ways — assessments may be more meaningful and treatment plans better fitted to the patient and family’s living situation. But in the world of RVUs, unless
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a patient happens to live across the hall from the physician’s office, it is not an efficient use of a doctor’s time. Similarly, care planning meetings, and calls and e-mails among providers (social workers and home health or hospice nurses) — the very stuff of coordinated care — detract from physician productivity. For many doctors, it is not a question of income as much as social responsibility to their employees and coworkers within the existing payment system that motivates them to see as many patients as they feasibly can.
A typical internist or family practitioner is scheduled to see ten or more patients in each half day of his or her clinic or office practice. New patient visits are typically scheduled for thirty to forty-five minutes and follow-up patients as little as fifteen. As long as the patients are all generally healthy and the visits are for a yearly health evaluation, or for treatment for high blood pressure, or for weight loss, or to start or adjust medication for depression — and if the doctor is experienced and highly efficient — this level of productivity is achievable. But for many of us — myself included — it is a dizzying pace. When even a few of a doctor’s patients have multiple medical problems and chronic conditions — diabetes, hyper-
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tension, obesity, congestive heart failure, AND depression — and are taking eight different medications, those fifteen-minute visits are just not enough time. Not even close.
Of course, on any given day, when a physician may be scheduled to see twenty or more patients in the office or clinic, it is also likely one or more of the practice’s patients will develop an acute problem and need to be seen. One patient may be an older man with metastatic cancer who has become sedentary over the past two months and now has a cough and fever. Another patient may be a woman with moderate dementia who lives in a nursing home and now has abdominal pain and vomiting and is agitated.
Trying to manage the myriad problems of a chronically ill patient in a busy office practice can feel like juggling Jell-O on a busy city street corner in a rainstorm.
The easiest, safest, and most efficient thing for a doctor to do is to send such acutely ill patients to the hospital. Once there, emergency department or hospital internal medicine physicians and nurses can take over and skillfully order the right tests and treatments for the patients’ medical problems.
Doctors know that if they send a patient “to the E.D.,” they will be called by the emergency physician, updated, and likely asked for advice. If the patient needs to be admitted, in most hospitals, a hospital internal medicine physician will manage the acute problem. The doctor can visit the patient in the hospital after office hours or the next morning.
In an ideal world, the doctor would be able to urgently see patients who are chronically ill and have now become acutely ill, with their families, before admitting them to a hospital. The doctor, patient, and family would discuss what the turn of events means in light of a person and family’s goals of care. What should the balance be now between treatments to save and prolong life and the person’s comfort? Is going into the hospital acceptable or should we try to treat this new problem at home or in the nursing home? Would they put any limits on lifeprolonging treatments if he suddenly became much worse? How important is it to preserve the opportunity to die naturally?
In the real world, doing what feels clinically right in such situations could easily consume an hour of time. In a busy clinic or medical office this would result in keeping other, scheduled patients waiting — an-
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noying at least a few — and leave a responsible doctor feeling irresponsible to other patients, as well as to his or her practice partners and staff.
Money does not drive the health care system. Money fuels it. When someone is seriously injured or ill, everybody in the system strives to get the person well. Money is no object — it is purely instrumental to getting all the treatments people need.
In the presence of so many problems and needs, everyone at ground level — patients, their families, and physicians — reflexively assumes that the more medical care they can give or receive, the better. There is now compelling evidence disproving that assumption.
Over two decades of research by Drs. John Wennberg, Elliott Fisher, and colleagues at The Dartmouth Institute for Health Policy and Clinical Practice documents large variations in the types and amounts of health care people receive during the last year of life. Analyzing Medicare data, the researchers found substantial differences from one part of the country to another in the number of days spent in hospitals and ICUs, specialists seen, and invasive procedures performed during the last year of life. Drilling into the data, they found striking differences in pat-
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terns of care between one city and another even within the same state, and sometimes between one major medical center and another in the same city.
Each edition of the Dartmouth Atlas of Health Care has found that greater intensities of medical services correspond with higher costs, but not with longer survival or better health outcomes. Despite seeing more specialists, undergoing more tests, and having more treatments, people who have cancer, heart attacks, or fractured hips — and reside where high medical intensity is the norm — don’t live measurably better or longer than people in regions of lower medical intensity. In fact, in areas accustomed to more medical and surgical treatments for these conditions, patients have comparatively poorer functional outcomes and lower satisfaction with care. When it comes to the final years of their lives, people in higher- intensity regions and institutions spend more of their time in hospitals and ICUs and less of their time at home.
When they looked at the academic medical centers that were ranked highest by U.S. News and World Report, the Dartmouth Atlas researchers found that average costs during the last two years of life ranged from $93,842 per patient at UCLA Medical
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Center in Los Angeles to $53,432 at Mayo Clinic in Minnesota. Mayo Clinic doctors were hardly skimping on treatments, yet were able to provide what they felt was the best care for patients at nearly half the cost of their colleagues at UCLA.
This is more than an economic issue. Quality of care also varies among institutions and regions, and access to needed health services can be limited. One example that is relevant for people with cancer is access to hospice services, which for many represents the best care for the end of life. This is not merely my assertion as a proud clinician in the field. The Institute of Medicine and the American Society of Clinical Oncology, among many other professional bodies, have called for expanding hospice use among people with late-stage cancer. Still, cancer patients in the United States today have little better than a fifty-fifty chance of receiving hospice care during the last month of their lives. Within that national average, the likelihood of being referred for hospice care varies widely from place to place. For instance, in a November 2010 Dartmouth Atlas Project report, “Quality of End-of-life Cancer Care for Medicare Beneficiaries,” people with incurable cancers treated at New York’s Montefiore
Medical Center in the Bronx or Westchester Medical Center in Valhalla have just an 18.6 percent chance of receiving hospice care, while someone with the same condition treated at Monmouth Medical Center in Long Branch, New Jersey, had a 73 percent chance — a nearly fourfold difference in cities that are a car ride apart.
The under-referral and underutilization of hospice care is a serious problem for people dying of cancer. Even in the highest- referring regions and medical centers, they are referred to hospice very late in the course of their illnesses and lives. When Congress passed the Medicare Hospice Benefit in 1982, the law anticipated that people would, on average, receive six months of hospice care before they died. Lawmakers understood that some people would receive hospice care for just a few days and that some would appropriately receive hospice care for substantially longer than six months. They designed the hospice benefit with provisions for mandatory re- evaluation and recertification every three months after the initial six months of hospice service. Instead, year after year, the national median length of hospice service ranges from sixteen to twenty days, and many dying people receive hospice care for
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fewer than three days. Intended as high- quality end-of-life care, for many patients hospice has become brink-of-death care. Not surprisingly, in geographic regions and cancer centers in which patients receive fewer days of hospice care, they spend relatively more time in hospitals and undergo more tests and treatments in the days before death.
Michelle’s mother lived in the most medically expensive area in the country, a dubious distinction that has not changed appreciably in the years since Jeanne Gider died. According to the Dartmouth Atlas of Health Care, in Miami, someone with a chronic illness has a 30 percent chance of spending time in an ICU at the end of life. This is more than twice the likelihood of dying in an ICU that someone who is living with the same condition in Portland, Oregon, would have.
The historical old saw, “Geography is destiny,” turns out to hold true in modern America.
Harvard surgeon and New Yorker magazine staff writer Atul Gawande set out to get a sense of why the regional disparities described in the Dartmouth Atlas occurred. He visited McAllen, Texas, which ranks among the highest in per capita health care
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expenses in the country. Care during the last year of life in McAllen, Texas, costs Medicare on average double what it does about eight hundred miles north in El Paso, and two and a quarter times what it does in Rochester, Minnesota.
Treatment in McAllen is not bad; by several parameters, it is quite good. The town is replete with medical and surgical specialists and can deliver state-of-the-art treatments for cancer and heart disease. People receive a lot of care, more than in most American cities. The local medical culture holds that when there is something you can do that might help a patient’s condition, and will likely do no harm, why not give it a try? McAllen’s doctors are not overtly driven by a profit motive, but since Medicare and insurance companies pay for diagnostic tests and disease treatments, there is no disincentive to doing more.
Many of the doctors and local health system administrators that Dr. Gawande talked with were surprised that their town’s practices were so different than El Paso’s. They wondered if their patients were more ill or the care they provided was just better. The data show that neither is true. Much more likely, a combination of the McAllen community’s ready acceptance of high-
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intensity treatments and the examples of local physician peers, doing more has come to represent good medical practice there. And like everywhere else, physicians who move to McAllen soon adopt local patterns of practice.
A factor more insidious than efficiency or profit leads doctors to emphasize high- intensity treatments over poignant conversations and counseling, shared decisionmaking, care planning, and end-of-life care: their aversion to talking about dying and death. Any doctor who dreads talking to patients about dying — and that describes a large majority — quickly learns that ordering more tests and treatments allows him or her to refocus on the disease and sidestep in-depth discussions with patients and their families about these morbid (or mortal) subjects.
Individually, doctors can be excused for these problematic practices. The education system has failed them and the health systems they work in are (with few exceptions) dysfunctional. Collectively, however, the medical profession has some explaining to do to the American public. It is high time that American doctors take a hard look at the reasons we do what we do.
In addition to pointing out problems, the
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Dartmouth Atlas group’s body of research identifies bright rays of hope.
Best-performing institutions and regions offer examples to emulate, in the form of practical strategies and model programs we can adopt or adapt to our local systems. High-functioning, lower-cost health care systems are not rare; we know exactly where they are and can learn from them. They can be found in Seattle, Washington; Salt Lake City, Utah; Grand Junction, Colorado; Danville, Pennsylvania; Temple, Texas; Durham, North Carolina; Mason City, Iowa; and Rochester, Minnesota. These systems and leading institutions do not skimp on services or accept lower quality. Instead, they exemplify individualized, patient-centered care. Their secret is no secret at all. Each patient’s medical records are kept secure, but also made reliably, readily accessible by doctors involved in the person’s care. Emphasis is placed on clear communication, proactive planning, and coordinating care among doctors and other health care providers and teams. More conversation and closer follow-up allows for less just-to-be-sure testing. It turns out that another way to be sure is to be in touch. More collaborative planning and team-to-team communication make for smoother transitions of care from
home to hospital to rehabilitation and nursing facilities and back to home with home health or hospice. Communication and planning also result in fewer crises.
The Dartmouth Atlas group estimated that Medicare could reduce hospital costs by 28 to 43 percent by adopting the patient- centered, proactive approaches of the most efficient health systems. When he was director of the Office of Management and Budget, Peter Orzag estimated that Medicare could save nearly 30 percent of costs if our nation’s health systems operated like the lowest-cost systems.
Care at the end of life will remain expensive, first, because of the continual advances in lifesaving technologies and, second, because people are sickest before they die. Yet with ongoing communication and iterative, proactive decision-making and planning as a person’s condition and treatment priorities change, care will less often be astronomically expensive. One multicenter study of eight acute-care hospitals with mature Palliative Care Services compared patients served by palliative care to matched controls. Among patients who received palliative care, costs were $279 less per day and $1,696 less per admission for those who were discharged from the hospital and $374
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less per day and $4,908 less per admission for those who died. A similar study of patients in New York State whose hospital bills were paid by Medicaid found that, among patients receiving palliative care, costs were $4,098 less per admission for those discharged alive and $7,563 less for patients who died during the admission than for comparable controls.
These savings occurred in absence of any requirement to forgo treatments or any financial cap on the amount of treatments a patient could receive. In fact, the cost savings were not even intentional. Instead, the lower costs were merely a by-product of palliative care: the result of assiduously matching people’s values and preferences to achievable health goals and making those goals the focus of individualized plans of care.
I have known many patients with advanced, incurable conditions who, prior to meeting me or our palliative care team, had assumed that the only choice they had was either accepting every treatment possible or accepting the worst thing possible: death. Before our team became involved, they were never asked whether, in addition to wanting to live as long and as well as possible, they eventually wanted to die gently. Until we
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met them, they had never been asked where they wanted to be during their last days of life. So, as they became sicker they went to the hospital — and continued to say yes to whatever life-extending treatments were offered.
Although continued innovation is welcome, we no longer have to invent ways to achieve reliable, safe, effective, and efficient care for people through the end of life. Workable and highly affordable strategies for making dramatic, necessary improvements to our nation’s health care system exist. We merely have to bring them to scale. But transforming America’s broken health care systems will take political will and cultural leadership. For the magnitude of change that is needed to occur, social activism is necessary.
Activism related to elder care and end-of- life care evokes images of silver-haired citizens wearing AARP or Gray Panther T-shirts, demonstrating on the steps of a courthouse, state house, or the Capitol, holding pickets and shouting slogans. And to an extent, political demonstrations and public events of that sort are needed.
Indeed, it is a wonder that the sorry state of dying in America has not sparked a citizen-consumer uproar. Remember How-
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ard Beale, the evening news anchor in the movie Network, who exhorted viewers to open their windows and scream, “I’m mad as hell and I’m not going to take it anymore!”? Throughout the city, people threw open their windows and declared their defiance.
In the real world, too, people have often pushed back when they were not getting the care they deserved and organized politically active social movements.
In the 1970s hemodialysis for kidney failure was limited and “God Squad” committees in hospitals decided which patients would receive this life-prolonging treatment. Outcries from people with kidney disease and their families stirred Congress to adopt a special Medicare benefit for dialysis care. When people were dying of AIDS by the thousands, it was citizen activism and voter pressure that drove funding for HIV research. The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act saved millions from dying of HIV-AIDS in the United States. When HMOs and insurance companies were forcing mothers and their newborn infants to leave hospitals within twenty-four hours after giving birth, a combination of consumer and citizen activism swiftly pushed passage of laws and
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changes in regulations that made “drive-by deliveries” history.
Why not in this situation? Dying is the most universal and arguably most difficult of life events. Pretty much by definition, dying people are as sick as they have ever been. They feel vulnerable — they are vulnerable — and many worry about being a burden. Their families are dealing with the strain of caregiving and the pain of losing a loved one who is not yet gone. Given the widespread nature of the deficiencies in care and social support — exemplified by people in pain, rampant rates of medical bankruptcy, nursing homes with too few nurses and aides to take basic care of people — and the toll these rents in the social fabric takes on sick people and their families, one wonders where the public outcry has been. What would it take to evoke a Howard Beale moment?
Of course, dying is different from birthing. It is different from “merely” needing dialysis, or even living with AIDS. For one thing, there is no community of dying people. Dying people die, and caregivers disperse, leaving no base for social or political action. Being mortal is too broad a category to generate a special interest group. There is no membership organization for
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dying people. (Can you imagine the ads for such a group?)
In addition to feeling too weak, tired, and generally unwell to advocate loudly for themselves, in my experience it is common for dying people to feel vaguely embarrassed about their condition. It is another effect of our death-defying culture. Doctors refer to dying patients as having “failed” medical treatment. (It always seemed to me that it was the treatments that failed the patients!) People come to believe they brought their disease upon themselves by smoking or drinking, or having sex with the wrong people, living in the wrong place, or simply by being too stressed. Similarly, family caregivers — in addition to being too emotionally and physically exhausted to advocate on behalf of their dying relatives and friends — may also feel vaguely insecure and wonder if they are doing all they can or should for the person who is ill. And families do not want to anger the doctors and nurses, or make waves with hospitals and insurance companies they rely on.
Of course, the majority of Americans who are not seriously ill — or currently caring for a frail family member — don’t want to think about it. Eventually, when things get bad enough and people get angry enough,
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we will get over our resistance and get on with fixing the problems. Improving the way we die is, after all, in everyone’s self-interest.
History strongly suggests that a combination of citizen and consumer activism will be required to achieve large-scale changes in care systems and patterns of behavior. The collective citizen and consumer efforts to reduce deaths from motor vehicle accidents offer some precedence. Citizens and consumers came together to demand safer cars (air bags and crash safety standards) and safer drivers (Mothers Against Drunk Drivers, stiff DUI [driving under the influence] penalties. Friends Don’t Let Friends Drive Drunk, Designated Driver programs). The sciences — epidemiology, surgery, preventive medicine, and public health — called attention to the problem and contributed to solutions. But it was the social movement, people working in concert and taking action in political arenas and the marketplace, that drove dramatic changes.
Voting with one’s dollars is a common and (usually) uncontentious form of activism. Customers directly reward businesses, including hospitals, group practices, clinics, home health agencies, and hospices, that provide high-quality services. In recent years CMS (the Centers for Medicare and Med-
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icaid Services), the federal agency that runs Medicare, has published (on the medicare .gov website) report cards with quality ratings of hospitals, nursing homes, and home health agencies. The U.S. Department of Veterans Affairs’ Veterans Administration transparently publishes health outcomes achieved by VA medical centers (at HospitalCompare.va.gov) with regard to blood pressure control, diabetes care, heart disease, serious infections, and deaths. Quality data is the fundamental ingredient of consumer activism and a powerful lever for bringing about change. (Data geeks are the unsung heroes of modern social change.)
The more people know about how hospitals, nursing homes, and home health and hospice services perform, the better able we are to vote at the ballot box and in the marketplace. Information about patient- centered aspects of care, such as how well clinical staff listen and communicate and how effectively they manage pain, can drive people to choose one facility or agency over another. Already several websites, like HealthGrades.com, post quality measures about doctors by region and specialty. HealthGrades.com compiles ratings that include how well the doctor listens, how
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much time he or she spends with patients, and the level of trust the doctor engenders. Doctors can also be compared by surgical outcomes and rates of infections or other complications, as well as by their patients’ satisfaction with pain treatment and communication. Such information will be increasingly available. Having health care systems and doctors compete for business on the basis of quality can accelerate needed changes.
Professionals and consumer coalitions can support effective social movements and citizen-consumer advocacy by teaching people what they can expect and how to get it.
The Patient’s Bill of Rights and the American Hospital Association’s brochure “The Patient Care Partnership” list basic expectations people can have of hospitals and health systems. We have a right to expect that hospitals will be clean and safe places and that the care hospitals give will be high quality. We have a right to a choice of competent providers. We must be given access to emergency services and be treated fairly and with respect. We must have opportunities to take part in medical decisions and can expect that our personal information will be kept private. We are within our
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rights to expect help when we are discharged from the hospital. And, when needed, we deserve assistance with making sense of medical bills and with arranging reasonable payment plans.
Correspondingly, as patients, we have basic responsibilities. It is our responsibility to be honest and forthcoming with our physicians and other providers. We must participate in decisions about our care — or designate someone we trust to participate for us — and adhere to treatment plans. We are responsible for letting our doctors know when our condition worsens or if we are unable to follow through on treatments. That includes letting our physicians know if we are, or become, unable to pay for medications they prescribe. Finally, we are responsible for making good-faith efforts to pay health care bills and working with providers when we cannot pay in full.
I have my own list of reasonable expectations that patients who are seriously ill deserve to have fulfilled.
To have one’s pain and other physical symptoms regularly assessed and competently treated.
To have adequate information about one’s condition and treatments, in clear and
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simple terms.
To have care coordinated between visits and among physicians and health programs involved in one’s care.
To have crises prevented when possible and have clear plans for managing emergencies in place.
To have enough nurses and aides on staff in hospitals and nursing homes to provide safe and high-quality care.
To have one’s family supported in giving care, in their own strain, and, eventually, in their grief.
Choosing a well-regarded physician and highly rated hospital or health care agency is important, but not sufficient. People have to take responsibility for speaking up for themselves and the people they love. The Patient’s Bill of Rights and my list of reasonable expectations are intended to help.
I often suggest to people that they can consider their relationship with their physician as a partnership. Within this partnership they can responsibly advocate for themselves or their loved one. I advise people to keep a running list of questions for their doctors and to keep logs or journals of times that symptoms occur, what they
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were doing just before the symptoms occurred, as well as what, if anything, they did to alleviate the symptoms, including any medicines they took and how effective the medicines were.
In managing pain, I teach patients a 0-to-10 scale so they can rate and record pain at different times of day, with various activities, and in response to medications and other treatments. And I review with people common descriptors of different types of pain — dull, achy, sharp, stabbing, cramping, tearing or burning, shooting, tingling, and pins and needles — that provide information to doctors about possible causes and specific treatments.
Similarly, for people with congestive heart failure, measuring and monitoring daily weight and amount of ankle swelling is invaluable in adjusting diuretic doses, improving their breathing, and exercise tolerance, as well as in preventing attacks of pulmonary edema and avoiding urgent emergency department visits and hospitalizations.
During a question-and-answer period at an evening public education forum on end- of-life care in the Midwest in which the subjects of parent care and effective advocacy were raised, a woman in her mid- to
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late fifties made a comment.
“Dr. Byock, my mother is eighty-three years old and basically crippled with arthritis and spinal stenosis. I live with her and am her main caregiver. She lives with pain, though we control it pretty well. She is mentally bright but has difficulties with her hearing and eyesight. I go with her to see her doctors. These days, the doctor she sees most is a hematologist because she has a condition that keeps her blood counts low. Mom likes him, but he is almost always rushed and seems distracted. Often before we have a chance to ask our questions, he is gone. What should we do?”
I recited my advocacy mantra: Be informed, prepared, polite, and persistent.
I suggested that it might be good to know the names of the people in the front office, as well as the nurses in her mother’s doctor’s office. Being person-centered works in both directions.
“You are already informed and can come to each appointment with a log of your mother’s symptoms, a current list of all the medications she is taking, along with whatever other pertinent information you want him to know. When her doctor comes in the exam or consultation room, let him know that you have a list of questions in hand
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that you would like him to discuss.
“On the other end of the visit, before leaving his office, at a bare minimum, you need to understand any changes that the doctor wants you and your mother to make in her medications and treatments. You should know when, where, and with whom you are to follow up. And you must know what you and your mother should do if she develops an urgent problem.”
I paused and she sat down, seemingly satisfied with my answer. But I hadn’t finished and felt it was important to be explicit. “If the doctor is rushed and leaves the exam room before answering these basic questions, stay put. They need the room and someone will come back to speak with you. If someone in the office gets annoyed, you needn’t raise your voice. If you wish, you have my permission to blame me. Tell them Dr. Byock said it would be unsafe to leave the office before clearly understanding these basic parts of the doctor’s plan for your mother’s care.”
A few minutes later another middle-aged woman at the forum raised her hand and in a quivering voice described a wrenching situation.
“My father is eighty-six and just had a stroke. He can’t move his left side. He’s
been in a nursing home for about a week. Last night when I visited, he was agitated and lying in his own urine. He said he had been pushing the button but nobody came. My father is a proud man. I am at my wit’s end and don’t know what to do.”
I gave her the same advice I had given Michelle the morning she called my cell phone in crisis. I said, “Unless and until you can be confident that your father will get the attention he deserves, don’t leave him alone. Gentle and caring people work in nursing homes, but very often there are not enough of them. Hopefully, the delay in responding to your father’s buzzer was a onetime problem and has already been corrected. But if not, you and your family are within your rights both to demand better care and to personally supplement basic care the nursing home does not provide.”
I continued. “My recommendations are similar to those I offered the person whose mother’s hematologist is always rushed: Be polite, pleasant, and persistent. Introduce yourself and learn the names of the staff. Befriend them if possible. Tell them about your father — what name he likes to be called, what he did for work, what he loves most in life — and bring in pictures of your father in his prime. Let them know you ap-
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preciate their care, and thank them for things they do to engage and pamper your father. At the same time, if they cannot meet his basic needs, stay put. Even if push comes to shove, politely hold your ground. His needs are more important than their feelings.”
Collectively, as voters and agents of accountability, citizens have vital roles to play in realizing transformative changes in America’s health care system. Carefully revised laws, regulations, and public policies could accomplish some important things. A change in federal law could finally dissolve Medicare and Medicaid’s arbitrary requirement that people give up treatments for their disease in order to receive hospice care. (Medicaid has already dropped the requirement for children.) New laws and regulations could ensure that staffing levels for nurses and aides in hospitals, nursing homes, and assisted living facilities rise to safe levels, in accordance with existing recommendations. Public policies could address the persistent, serious deficiencies of medical education that the Institute of Medicine and other professional bodies have cited, so that we do not graduate another generation of physicians who lack basic palliative care knowledge and skills.
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People through the ages have held common fundamental wishes: to live as long and as well as possible, and, eventually, to die gently. To fulfill these wishes in the third millennium, people deserve skillful help in weighing their options and making sound medical treatment decisions. We must train doctors in the ethics and science of decisionmaking and the art of discernment. If we have to march, demonstrate, litigate, and legislate to demand that doctors are competent in caring for people through the end of life, so be it.
In health care today, the only constant is change. I can think of a number of treatments that in recent memory represented the experimental fringe of care but now warrant serious consideration by people with late-stage, life-limiting disease. A decade ago, it would have been surprising for a person with far advanced leukemia or liver failure or heart failure to be evaluated and “listed” for a stem cell transplant, a liver transplant, or a heart transplant. No longer. Today, people commonly ask about these procedures and tell stories of patients they have known, read about, or seen in the news who have gone through these or other extraordinary treatments and done well.
Examples are easy to find. After having a
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left ventricular assist device, or LVAD, implanted — what some patients have called their “artificial heart” — former vice president Dick Cheney returned to the political fray on cable news and the lecture circuit. David Crosby of Crosby, Stills and Nash, had a liver transplant in 1995 and has thrived and continued performing for years. After his liver transplant in April 2009, visionary Apple CEO Steve Jobs lived two and a half years, during which he developed the iPad and advanced models of the iPhone.
We can expect future advances in medicine to keep coming at an ever faster pace. Treatment decisions are going to get harder as the array of treatments for failing hearts, livers, kidneys, and lungs expands beyond our current imagination. Some things won’t change. People are going to grasp for treatments to keep from dying. Doctors are going to offer dying patients treatments to stay alive, even if for only a little bit longer.
And so, the problems will become ever more complex.
Experts in systems and cultural change and strategic planning consultants often quote Dwight D. Eisenhower who said, “If a problem cannot be solved, enlarge it.” By shifting perspective and looking at a previ-
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ously intractable problem within a new context, sometimes solutions become clear.
That is what is needed here. If we see only medical problems, we will only bring medical solutions. As long as we define our social responsibility as the need for higher-quality and more efficient health systems, doctors, and medical care at the end of life, the complexity and cost of the challenge will doom us to fail.
However, if we see the problem within a larger social framework — helping people to live in safety and as well as possible as they age, care for one another, and face the natural end of their lives — we will discover approaches that are refreshingly intuitive and many more resources than we had previously imagined were available. Then, just possibly, we can fulfill our social responsibilities and meet our loftier goals.