7
TAKING CARE
Helping Those Who Bear the Parkinson’s Burden
One of the first things that happens when you get Parkinson’s is the phone stops ringing.
—Alan Leffler, retired business owner and Parkinson’s disease caregiver1
TODAY, IN MANY PARTS OF THE WORLD, THE MAJORITY OF PEOPLE with Parkinson’s are never diagnosed. Even among those who are diagnosed, most do not receive appropriate care. The almost universal underappreciation of this disease, however, stops at the doors of anyone who lives with or cares for someone with the disease.
Hans Jakobs, whose name has been changed, is a fifty-two-year-old bookkeeper from the oldest city in the Netherlands, Nijmegen. When Professor Bas Bloem, his neurologist and an author of this book, told him that the symptoms that had plagued him for years were caused by Parkinson’s disease, he began to cry. So did his wife, Anna, and their daughter, Christine (names also changed). Bloem assumed that the family’s tears were triggered by the bad news. Instead, the Jakobses were crying with relief.
A glass of water and several tissues later, Hans Jakobs was able to speak. He said, “Recognition, finally. The beast got a name.”
Hans’s dramatic story is, unfortunately, quite common.2 Over the course of seven years, he had developed a series of symptoms that no one could explain. First, Hans, who had always been cheerful, became depressed. A family doctor prescribed antidepressants. They provided some relief, but Hans did not feel like his usual self. The doctor suggested it was some kind of burnout or a midlife crisis. But neither Hans nor his wife felt comfortable with this explanation. Their marriage was fine, and Hans really enjoyed his work where he had just been promoted.
Not long after Hans first started feeling depressed, Anna decided to sleep in another bed. That did not help his mood, but it was necessary. During his dreams, Hans would become violent and accidentally hurt her. “When he was fighting with animals that attacked him in his dreams, he would strike out,” she said. “I consequently sustained bruises on a number of occasions so I had no other option.”
As the years passed, Hans, who was in excellent physical shape, began to experience inexplicable fatigue. Modest bouts of exercise would send him to the couch. He visited an internist who ran some blood tests that came back normal.
“But I definitely knew that something was wrong when I also developed this sore shoulder on my left side,” Hans said. “It was a complete mystery to me why this was happening since I am right-handed and barely use my left arm for heavy duty lifting. Yet that was the side that was aching all the time.” Much to the family’s frustration, the orthopedic surgeon whom Hans saw said that there was nothing wrong with the left shoulder. “Mark my words,” the surgeon said, “this will be gone in a few weeks.” But, of course, it was not.
His family doctor referred Hans to a physical therapist. The therapist, an experienced practitioner who was close to retirement, was the first to offer some hope in terms of finding an answer. “Your shoulder appears fine to me, but there is something funny about the way you walk. I am not sure what it is, but maybe you should see a neurologist instead of me.”
To the experienced neurologist, the picture was clear. The doctor immediately noted his new patient’s slowness in rising from his chair. Hans’s face appeared friendly, but he did not blink at a normal clip. As he walked toward the office, his left arm barely moved. These were all unmistakable signs of Parkinson’s.
In hindsight, the depressive spell, the acting out of his dreams, the fatigue, and the asymmetric shoulder pain were all early symptoms. There were other indications too, including loss of smell and constipation.
The false assurance Hans received that he was fine did not alleviate his suffering or his family’s constant worry that something was wrong. Hans said, “Now that I know the name of the beast, I can finally begin to fight it.”
SEEING WHAT IS IN FRONT OF US
Some conditions, like colon cancer, can remain hidden for years. Parkinson’s, though, has so many visible features that when they are present, the diagnosis can readily be made.3 Despite the multitude of clues, many are not diagnosed because patients or physicians erroneously attribute their symptoms to aging or fail to appreciate the issues.4 In addition, some may not know that many aspects of Parkinson’s are very treatable.
The number of cases that go undiagnosed—in both low- and high-income countries—is astonishing (Figure 1). In a 2003 study none of the individuals researchers identified in rural Bolivia as having Parkinson’s had ever been diagnosed.5 In the Italian Alps, 83% of those with the disease had not been told they had it.6 In rural parts of China, 69% to 78% had not. In Beijing, almost half the people with Parkinson’s were also undiagnosed.7 And in southwestern Mississippi, the numbers were similar—42%.8
People with undiagnosed Parkinson’s are all around us. In 2018, Samuel Jones (not his real name), a seventy-year-old retired mechanic, was hospitalized for possible depression in a small town in Alabama. Over the previous ten years, his walking had become slower, and his dexterity had diminished. He could no longer repair faucets or even hammer a nail. Jones, who had always been a jovial guy, also began interacting less with his friends and family. He became progressively withdrawn and spent more time in his favorite chair just watching television.
His family grew concerned about his mood. They eventually took him in to the hospital. Fortunately, an astute psychiatrist noticed that Jones’s main problem was not depression but slowed movements. Even though he did not have a tremor, it was clear that Jones, who could barely sit on a bed without support, had advanced Parkinson’s disease. The doctors prescribed levodopa.
When the psychiatrist saw Jones again one month later, he asked how Jones was doing. Jones popped out of his chair, glided across the room, and smiled.
After a decade of needless suffering, Jones was fortunate to be diagnosed and treated. Many are not.
GETTING THE RIGHT TREATMENT
Once people are diagnosed, most do not receive the care they need. Treatment for Parkinson’s rests on four pillars. Patients require appropriate medication, surgery in some instances, a multidisciplinary team of health-care providers, and, perhaps most importantly, their own personal support. The problem is that almost no one with Parkinson’s gets all four.
In his fifties, John Harlan was a surveyor and an avid skier. Going down the slopes in the Adirondack Mountains in upstate New York, he noticed that something was off. His ease and grace seemed to be slipping away. He initially attributed the loss to age. However, he later became anxious and then developed cramping in his right hand. A local neurologist diagnosed him with Parkinson’s disease and prescribed levodopa.
Like most, Harlan responded well to the medication and resumed an active life with his wife. But the drug’s benefits did not last. The levodopa caused him to have involuntary movements that made him sway when sitting or standing. He could no longer be still.
A decade into the disease, his symptoms became more disabling. His feet would become stuck to the floor, or frozen, when he walked. Then Harlan’s wife of forty years, who had helped care for him, died. Alone and struggling to shop, cook, and dress, Harlan decided to enter a nursing home.
There, Harlan received assistance but was unable to see his longtime neurologist. Instead, he was treated by an internist who had limited training in and experience with Parkinson’s. Harlan’s disease continued to progress. In an attempt to reduce his tremors and improve his other symptoms, the nursing home doctor added a new medication. Although well intended, the change made Harlan worse.
Harlan, who had held on to his fun-loving, congenial nature when he first moved to the nursing home, became confused and agitated. He physically struck out at nurses and fellow residents. The doctor started a medication to improve his memory and another to sedate him. Harlan only became more disoriented.
At one point, he climbed out a window, scaled a fence, and tried to leave the nursing home. After he was found and led back to the facility, the staff placed him in restraints. Harlan’s confusion and despair worsened.
An innovative administrator at the nursing home reached out to Parkinson’s specialists at a major medical center three hours away in Rochester, New York. He asked if they would be willing to see Harlan via “telemedicine”—essentially doctor visits over video conferencing. At the time, in 2007, video conferencing technology was in its infancy, telemedicine was novel, and using it in nursing homes was almost unheard of. Fortunately, an open-minded specialist said yes.
In his initial video visit, Harlan had slurred speech, writhing movements, and frequent episodes of freezing. He also exhibited signs of dementia. He scored twenty-one out of a possible thirty on a basic cognitive test. Over the next nine months, Harlan “saw” his Parkinson’s specialist six times without ever having to travel. At each visit, Harlan’s nurse accompanied him. She supplemented Harlan’s story with her own observations.
Based on what he heard and saw, the specialist eliminated two medications and adjusted the timing and dosage of others. Harlan’s confusion and dementia disappeared; his score on the cognitive test improved to a perfect thirty. The doctor also referred Harlan to physical therapy at the nursing home. Harlan’s mobility and confidence improved. Although his days on the slopes were long behind him, Harlan was ready to take walks again.
Thanks to this team approach, Harlan gradually regained his personality and his freedom. He never hit anyone again and lived three more pleasant years. At age eighty, Harlan died of advanced Parkinson’s disease.
Harlan’s story is exceptional in that he was eventually seen and treated by a specialist. Few are. Two-thirds of people with Parkinson’s in US nursing homes never see a neurologist in the clinic, and only a handful of these specialists go to nursing homes.9 Ninety percent of residents do not receive physical therapy. Fewer than 10% see a mental health specialist.10
Other countries have similar shortcomings. In the Netherlands, many nursing home residents with Parkinson’s do not receive the right medicines. Some receive inappropriate doses. Others are prescribed drugs that worsen the disease.11 Almost 85% die within three years, which may be due to the advanced stage of the disease. But many nursing home residents do not receive the adequate care and support they deserve in the final years of their lives.12
Up to 40% of people with Parkinson’s will end up in nursing homes and frequently receive sub-standard care. In addition, many people develop Parkinson’s disease after moving to a nursing home and are never diagnosed. They experience considerable and at least partially avoidable disability.13
One of these patients was a seventy-eight-year-old man who had lived in a nursing home for several years and become bound to his chair and bed. A visiting neurologist saw obvious signs of advanced Parkinson’s. He recommended levodopa. The improvement was incredible. The man started walking again, and his mobility increased such that he could leave the nursing home to shop without assistance. As part of a standard cognitive test, the patient was asked to write a simple sentence (Figure 2). He wrote, “The sun has started to shine again in my life.”
Even the newly diagnosed have limited access to care. Dr. Allison Willis, now at the University of Pennsylvania, and her colleagues examined the records of 130,000 Medicare beneficiaries who had recently been diagnosed with Parkinson’s disease.14 They found that only 58% had seen a neurologist within four years.15 Those who had not were 16% more likely to fracture their hip, 27% more likely to be placed in a nursing facility, and 28% more likely to die prematurely.16
The United States spends 40% more on health care per person than any other country.17 What are we paying for if almost half of our seniors with a neurological disorder do not see a neurologist? African Americans, women, and the elderly with Parkinson’s disease are even less likely to see a neurologist.18 As just one example of the treatment disparities, among 8,400 individuals who have received deep brain stimulation for Parkinson’s, only 88 (1%) were African American.19
Appropriate neurological care improves health and saves money. In the United States, individuals with Parkinson’s who see neurologists have fewer hospitalizations and lower health-care costs.20 The more frequent the visits, the lower the costs.
RECOGNIZING THE TOLL
Not only is Parkinson’s the fastest-growing neurological condition on the planet, but it is also among the most disabling.21 Individuals with Parkinson’s disease suffer. And so do their caregivers.
Dr. Bob Dein is a successful, mild-mannered pathologist from Florida. In 2002, his wife, Barbara, was diagnosed with Parkinson’s. At that time, they had been married for thirty-two years. Barbara, ashamed and fearful of her disease, asked her husband not to tell anyone of the diagnosis, including their grown son.
A decade later, Barbara developed hallucinations and started to become confused and paranoid. She became suspicious that her husband would betray her secret and that her husband was seeing other women. Afraid of upsetting his wife, Bob hid his wife’s new psychosis even from her physicians.22
The disease burdened both of them. After years of suffering without any support from their community, Bob did not see a way out. During one especially bad night, his wife began throwing things and slapped her medication out of his hand. Bob, out of exasperation, threw a glass of water in her face.
He was horrified by what he had done. The next day, he decided to end his life. He had already come up with a detailed suicide plan. He would drive his boat far out into the Gulf of Mexico. He would then tie two car batteries to his ankles and jump into the water.
His wife had an appointment that morning. After dropping her off, Bob waved good-bye, went home, and started up his boat. But he could not bring himself to leave. Barbara had looked so weak. Eventually, he went to pick her up from her appointment, but he had made an important decision—he would seek help.
He called her neurologist, who agreed to admit Barbara to a local hospital to adjust her medications under close observation. While hospitalized, she had a psychotic episode that required an entire hospital wing to be locked down. Under the state legal system, Barbara had to be transported to a psychiatric hospital for mandatory care. She never came home, and two years later, she died in a memory-care unit. The legal system had done what Bob could not do himself—and possibly saved his life.
More than 34 million Americans care for an adult over fifty; almost half of these adults have a neurodegenerative disorder like Parkinson’s disease.23 These caregivers suffer in various ways. In a British survey of caregivers, over 40% (most of them women) reported their health had worsened because of this work. Almost half had elevated depression scores, and two-thirds felt that their social lives had suffered.24 In the United States, older people who take care of another adult are 60% more likely to die sooner than noncaregivers. Many, like Dr. Bob Dein, contemplate suicide.25
After his wife died, Bob began taking photographs of people with the disease. Figure 3 is an early photograph of his wife. Bob and Barbara’s story illustrates the tremendous burden that Parkinson’s can be. It is also a powerful tribute to the wonderful resilience shown by families who have to cope with Parkinson’s. Like Bob, many spouses and other caregivers show amazing commitment to caring for their loved ones. And Bob is not alone in turning this ordeal into something meaningful. In his case, he is using photography to depict the many different faces of Parkinson’s to educate and inspire others.
One reason why Parkinson’s is such a devastating disease is that people can experience a vast array of disabling symptoms. As we’ve seen, the toll goes beyond the tremors most of us associate with it.
Stephanie Hughes, who also asked that her name be changed, shows how far the disease can go. She is a mother of three and a grandmother of two. She is also the wife of Jack Hughes (also not his name), a seventy-one-year-old Vietnam veteran and former grocery store manager. Married for nearly forty years, the couple has lived what Stephanie calls a “blessed” life in upstate New York. But six years ago, Jack developed a tremor in his lip and would often find himself drooling.
He had been exposed to Agent Orange in Vietnam. “It was everywhere,” he said. After his diagnosis, he started on levodopa, and his symptoms were initially well controlled. The couple continued to be active, traveling throughout the country and around the world.
But as the disease progressed, so did the severity of Jack’s symptoms. He also developed new ones, including an overactive bladder, which is common in Parkinson’s disease. He initially had a few accidents but is now incontinent. At night, he has to wear adult diapers, but they do not work well.
Each night, Stephanie lays out two bed pads, a highly absorbent towel, and an extra sheet over the area where her husband sleeps. Most of the time that is sufficient, but on some nights Jack soaks through all of them. Not surprisingly, both wake up exhausted and frustrated. Jack regularly falls asleep at unwanted moments, including in the middle of conversations with his friends or Stephanie.
Parkinson’s has also affected Jack’s ability to swallow. He began to lose weight and to have trouble taking his medications. So a few years ago, doctors placed a feeding tube into his stomach.
Most mornings, Stephanie makes Jack pancakes, which is one of the few things he can still eat. As the day goes on, it becomes harder for him to swallow. Stephanie then gives him extra calories through his stomach “plug.” Despite her best efforts, he continues to lose weight.
Over the last year, Jack’s thinking has worsened. Most days, he can still carry on conversations with his wife. Recently, though, he has started speaking less, and Stephanie does most of the talking for him. When he visits the doctor, he is quiet. He cannot name the month or the president.
Because his Parkinson’s stems from his exposure to Agent Orange, the Hughes are entitled to two hours of home health care daily through the Veterans Health Administration. But there is a shortage of home health aides in their area, so they are not always able to get the help they need and earned.
Stephanie is healthy and still faring well, but on some days she is overwhelmed. She will call her children to see if they can lend a hand. Asked if they are bitter about their circumstances, Stephanie replies, “No. After my husband first retired, we had a good five years to enjoy life and travel. Not everyone gets that.”
IT TAKES A TEAM
As heroic as caregivers can be and as worthwhile as it is to see a neurologist, they are often not enough. Even levodopa and other medicines have their shortcomings. Not all features of Parkinson’s respond to drugs.26
People with Parkinson’s often benefit from a team of specialists. The disease has so many symptoms that professionals from thirty different disciplines, including dentists, dieticians, pharmacists, and psychiatrists, can provide help. Not every patient will require every specialist, and many experts will only be needed temporarily. Ideally, the team is tailored to an individual’s needs.
Frans de Wit (not his real name) is a Dutch plumber with Parkinson’s. His experience exemplifies the limitations of the generic medical care that many patients receive. When diagnosed in his fifties, he was started on levodopa and was pleased by his improvement. He even resumed working.
After about seven years of treatment, though, Frans began to experience sudden and unexpected episodes during which his feet felt as if they were glued to the floor, a common occurrence in Parkinson’s. These episodes were initially relatively innocent. But he and his wife, Marijke (name changed), began to worry when these freezing episodes started leading to falls. After Frans broke his wrist, his neurologist decided to increase his levodopa dose. His symptoms improved but only temporarily.
Frans’s walking problems became worse. He rarely went outside. Fearful of another accident, he restricted his walking even within his own home. His internist referred him to a physical therapist who had previously treated Frans for low back pain. The therapist had limited experience with Parkinson’s but tried putting Frans on a treadmill twice a week. This regimen did little to alleviate Frans’s freezing episodes, and his mobility decreased further.
Then the de Wits visited a “Parkinson Café.” Organized by the Dutch Parkinson Association, these cafés are actually support groups whose name offers cover due to the stigma that often accompanies the disease. At the café, the de Wits learned from fellow patients and caregivers about ParkinsonNet, a network of health professionals with extensive experience and expertise in Parkinson’s care (Box A).
To be a part of the network, clinicians, including physical therapists, nutritionists, social workers, and sexologists, go through intensive in-person training and continue with regular follow-up courses. Patients can then find trained therapists near them through a website. Through the network, patients have also formed their own regional communities where they advise researchers on the best study designs for their population.29 An educational television series called ParkinsonTV stars people with Parkinson’s and offers more information. It is now available online at www.parkinsontv.org.
Based on recommendations from his new friends, Frans went to see Trudy Bloem (no relationship to Bas Bloem), a ParkinsonNet physical therapist. As soon as he entered her clinic, he noticed a difference in the experience and the expertise. He saw several other individuals with Parkinson’s exercising. Some were walking on treadmills; others were cycling on stationary bicycles.
Bloem’s approach was different from the start. She was already familiar with the freezing and many of Frans’s other symptoms. She also had ready solutions.
She tested whether walking paced by the rhythmic sound of a metronome might help Frans. She knew that audio cues could help people with Parkinson’s maintain rhythm when walking and avoid freezing. Much to Frans’s surprise, it did. Finding the optimal frequency required a bit of tweaking. Although his freezing was not cured, his walking and balance were better. In another test, Frans stepped over stripes that were separated by small distances on the floor. By reminding him to lift his legs higher, these visual cues also helped his walking.
Frans now uses small music ear buds, which his grandson gave him, to listen to the beat of the metronome and improve his walking, especially outside. At home, he has worked together with Bloem to paste white stripes onto the floor in critical places, such as near doorways. As a result, he feels more independent and falls much less.
REACHING THE COMMUNITY
ParkinsonNet has successfully trained professionals in many, predominately urban areas. However, most of the world lacks access to such care. In rural areas and in some lower-income countries, though, there are simply not enough experts. In India, nearly 1 billion people live in areas without a practicing neurologist. For twenty-three sub-Saharan African countries, the average population per neurologist exceeds 5 million. For example, only three neurologists serve a population of around 50 million in Tanzania. In the Arab world, there is only one neurologist for every 300,000 individuals.30 Training new physicians and neurologists is necessary but will require considerable resources and time.
Technology may help bridge the gap. One model for how this can work is the Extension for Community Healthcare Outcomes (Project ECHO).31 Project ECHO was developed in 2011 to support primary care physicians caring for individuals with hepatitis C in rural New Mexico. It connects local clinicians to remote experts via video conferencing. During weekly or monthly sessions, clinicians learn more about the disease and discuss with experts how best to care for their local patients who require more specialized care.
Project ECHO now covers fifty conditions, from diabetes to dementia, and reaches twenty-one countries on six continents.32 Extending Project ECHO to Parkinson’s could improve care in areas of the world with few neurologists and increase the capacity of clinicians who are already seeing the majority of individuals with the disease.33 The initiative could also be extended to engage other key clinicians, including nurses and therapists.
TAKING CARE TO THE PATIENTS
Both ParkinsonNet and Project ECHO bring expert care into communities that previously lacked it. Other programs do the same by returning care to the home.
Current care for Parkinson’s could not be designed worse. At its best, it requires caregivers to drive often elderly individuals into major urban centers for doctor’s appointments. These visits provide physicians with superficial snapshots of complex and fluctuating symptoms and leave nearly all participants overburdened and overwhelmed. Placing the burden on patients means that those with the greatest need often have the least access to care.
In the 1930s, the house call brought care to patients and accounted for 40% of all doctor visits.34 Since then, house calls have almost disappeared. At their nadir, less than 1% of Medicare patients received such care.35 Fortunately, they are beginning to make a comeback.36
Dr. Jori Fleisher, a Parkinson’s specialist now at Rush University in Chicago, and her colleagues are bringing back the house call. A specialist, social worker, and nurse visit individuals with Parkinson’s in their own homes. Over two years, they have conducted nearly three hundred home visits to eighty-five individuals. The program, funded by the Edmond J. Safra Philanthropic Foundation and the Parkinson’s Foundation, has reached people with the most advanced disease whose average age is eighty.37 The seventy-minute visits include conversations with the social worker and caregiver, a detailed medication review by a nurse, and the development of a comprehensive care program that is discussed with the patient and the caregiver. Most visits result in a change to medication or additional treatment recommendations, and satisfaction with the program is high among patients and caregivers.38
The University of Florida launched a similar initiative called Operation House Call in 2011. The program, funded by the Smallwood Foundation, sends Parkinson’s disease fellows—specialists in their last year of medical training—to visit patients in their homes. Many live in rural areas, lack health insurance—some are too young for Medicare—or cannot afford to travel. The fellows listen to patients, perform examinations, and provide recommendations to improve their health. As a result, patients’ symptoms have improved, and fewer hospitalizations have occurred.39
The same video conferencing that helped John Harlan in the nursing home is also enabling virtual house calls. Not surprisingly, patients like receiving care closer to home.40 These visits eliminate the waiting room, the parking garage, and driving, which is impaired in Parkinson’s disease.41 On average, this next generation of house calls saves patients three hours of time and one hundred miles of travel per visit.42 Some patients even say that virtual visits offer a more personal connection than traditional appointments.43
The roots of telemedicine for Parkinson’s began in Kansas in 1992.44 A pioneering neurologist wanted to reach rural Kansans who had the disease and address the inequality in medical care. Most people in Kansas do not live near a specialist. So Dr. Jean Hubble, then at the University of Kansas, came up with a novel solution. She used a new technology called video conferencing to connect to satellite clinics throughout the state. She then could see patients who lived hundreds of miles away without their having to travel long distances.
Hubble was uncertain of how patients would respond. She wondered if the patients would be comfortable in front of a video camera, if they would feel that they had truly seen a physician, and if they would miss their doctor’s touch. But the patients liked telemedicine, and all thought that the videoconferencing improved access to good care.45 Since then, telemedicine for Parkinson’s disease has begun to gain broader acceptance and use.46
Future care could marry the ability to see experts remotely with smartphones and wrist sensors that can monitor symptoms. These technologies allow for passive monitoring in a person’s natural environment. Recent work has shown that, with appropriate support, older adults are willing and able to use such sensors.47 In addition, these approaches can detect subtle changes that are invisible even to a trained eye.48
In the future, technology could enable us to reach those huge populations of people who are undiagnosed and, as a result, not receiving treatment. A smartphone app may even facilitate diagnosis of the disease. Individuals might be able to tap an app or use a smartwatch to assess their movements to determine if they might have Parkinson’s. They could then use the same device to reach a clinician who could conduct a remote exam and provide care.49
Such applications will be especially important in middle- and low-income nations. In countries like China and India, physicians are rare, but smartphones are plentiful. Some of these applications are beginning to emerge, including for the evaluation of stroke in rural India.50 The time when a phone, watch, or other digital device can inform users of their Parkinson’s disease status and eventually connect them to care may be closer than we think.51
REMOVING ECONOMIC BARRIERS TO CARE
Given these effective models, why are so many people with Parkinson’s still going without good care? In the United States, the answer is, in part, Medicare’s policies.
Created in 1965, the universal health insurance program for people sixty-five and older is one of the great policy accomplishments of the last century. At the time it was created, only half of older adults had access to medical care.52 Now, almost all do—and life expectancy for those over sixty-five has increased.53
But in the five-plus decades since its inception, Medicare has not kept up with our shifting medical problems. When the program started, the big health issues were acute conditions, like heart attacks and strokes. But the principal challenges for the current generation of Medicare beneficiaries are not these emergencies but chronic illnesses like Parkinson’s. Because rates of Parkinson’s increase with age, most Americans with the disease are insured through Medicare. This is where the program falls short.54
Most older adults want to live in their homes or communities for as long as possible.55 And yet, 88% of Parkinson’s disease health-care costs are spent on hospitals and nursing facilities.56 That is because Medicare’s financial incentives direct care away from peoples’ homes and communities and toward expensive institutions.57 For example, Medicare’s reimbursement for care provided in the community is modest. It pays about $100 for a thirty-minute follow-up appointment for Parkinson’s disease. If the same doctor visit occurs in a hospital-based clinic, Medicare pays double—$200.58
Worse, Medicare pays even more for complications of the disease, many of which are preventable. For example, if a man with Parkinson’s falls and breaks his hip, Medicare will pay approximately $25,000 for surgery and institutional care.59 Of that $25,000, about 85% goes to the hospital or skilled nursing facility following hospital discharge. In studies that will surprise few, hospital care for individuals with Parkinson’s is frequently unsafe.60 Patients encounter delayed treatment, the wrong medications, prolonged immobility, lengthy stays, and high mortality.61
The $25,000 for the broken hip is one hundred to two hundred times what Medicare pays for a visit to a neurologist to optimize balance and overall function, which we know can help prevent falls.62 In short, Medicare pays little for preventive care and much for complications. And the situation is not much different in other countries. In England, the National Health Service pays around £29 million on emergency admissions following falls by individuals with Parkinson’s and almost £3 million for preventable bladder infections.63
Not surprisingly, individuals with Parkinson’s fall a lot. More than 60% have fallen at least once. Almost 40% fall repeatedly. In the latter group, the average number of falls per year is twenty.64 Many of these falls result in hip fractures, which are two to four times more common among those with Parkinson’s compared to similarly aged individuals without the disease.65 Lessons for learning tai chi, which can prevent falls, are not covered by Medicare.66
In addition to the resulting pain and disability, the economic costs of falls are staggering. One US study estimated that the medical costs—principally to health insurers—was $50 billion annually.67 Of that, $38 billion—more than the entire research budget of the National Institutes of Health—is paid by taxpayers through Medicaid and Medicare.68
Long-term care facilities, such as nursing homes, now house one-quarter of Medicare beneficiaries with Parkinson’s.69 Medicaid, which is the largest payer for nursing home care, spends about $80,000 per person per year for such care.70 These resources could be better directed toward less expensive home care; yet Medicare only provides such coverage in limited circumstances, such as after discharge from a hospital. In essence, Medicare and other public funders provide the most coverage—and pay the most—for services that patients seek to avoid and the least for services that patients and their caregivers want and need. As a result, affected individuals and their families suffer.
Telemedicine could also save Medicare money and provide patients better care—if only Medicare would cover it. The Veterans Health Administration has embraced virtual visits.71 Consequently, veterans throughout the country receive care remotely from Parkinson’s specialists and even mental health professionals.72 However, Medicare’s coverage of telemedicine is limited to clinical settings (e.g., hospitals) in “health professional shortage areas,” which are typically rural counties. Care provided in the home via telemedicine is not covered at all.73 In 2016, Medicare spent little—less than $30 million, or less than 0.01% of its nearly $600 billion budget—on telemedicine.74
Unlike so many other countries, the United States is fortunate to have enough general neurologists to care for individuals with Parkinson’s disease (Figure 4).75 You would think it would be possible for more patients to reach them.
Medicare needs reform to improve care and lower costs. Currently, a committee created by the American Medical Association helps set Medicare reimbursement rates.76 The process is anything but open and democratic. The meetings are generally closed, most members have no term limits, the proceedings are private, and minutes were only recently made public.77
The committee consists exclusively of physicians, and representation is linked not to their care of Medicare beneficiaries but rather to their specialties.78 The result is that smaller groups, such as plastic surgeons, have an equal voice to larger groups, such as family physicians.79 The smaller, but more numerous, groups tend to do things to patients, while the larger groups tend to care for patients. The committee thus favors higher rates for those who perform procedures. The losers are those who only provide care.81 For example, Medicare pays more for an often unnecessary, onetime imaging test for Parkinson’s disease than for caring for someone with the disease for four years.82
FIGURE 4. Number of neurologists per 100,000 people for select countries.80
The committee, like those that advise the Food and Drug Administration (FDA) on approval of drugs and devices, should include patients.83 Some patients have contributed taxes to Medicare for the last fifty years. In many cases, these individuals would be far better positioned to make decisions about what services they need and what offers true value to them than physicians with inherent conflicts of interest.84 Patients gained a voice on FDA advisory committees after a report commissioned by President Richard Nixon made the recommendation.85 The time is long overdue for Medicare to take the same step forward.