The story of two artists with incurable neurological disease sharing fear, frustration, and friendship as they push to complete the most rewarding work of their careers.
The Internet has ushered in a patient empowerment revolution that’s had a tremendous impact on the doctor-patient relationship. The term “e-patient” was first coined by the late Dr. Thomas Ferguson, visionary medical editor of The Whole Earth Catalogue and author of the 1996 book, Health Online: How To Find Health Information, Support Groups, And Self Help Communities In Cyberspace. After Ferguson’s death, his work was advanced by others, including Dave deBronkart, a high-tech marketing executive who was diagnosed with stage four metastatic cancer in 2007 and given 28 weeks to live. Using the Internet to explore treatments and clinical trials, deBronkart, known as “e-patient Dave,” was able to beat his cancer and blogged about the experience. By 2009, he had become an international spokesperson for the e-patient movement and co-founded The Society of Participatory Medicine. The nonprofit describes itself as “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” According to the Society for Participatory Medicine, 90% of patient health care takes place outside the doctor’s office, much of it through Googling and interaction with online patient communities.
While there’s plenty of bad information in cyberspace that can pique a patient’s curiosity (and sometimes her paranoia), a discerning patient-detective can sift through sites and become educated about her illness. A patient’s research can make appointments more complex for doctors than they used to be; patients like Hadley and me often arrive with a list of questions about new research and therapies. In her book, In the Kingdom of the Sick, Laurie Edwards addresses this doctor-patient paradigm shift:
(The model) used to be that physicians know everything, patients know nothing and patients were lucky to even get time with their physician. Culture change is not easy, seamless, or immediate on either side, and simply barging into a physician’s life with email or downloaded information is not an appropriate way to go about cultural change. The keys are engaging patients in shared decision making, providing them with credible, peer-reviewed health resources, and acknowledging that patients are doing right by getting informed. Not every patient who comes in with a stack of printouts is a cyberchondriac, and not every physician who gets frustrated with misinformation is unreceptive to patients…
Dr. Bright always honors my curiosity by answering my questions respectfully but efficiently. When I see him twice a year, I’m eager to touch on the latest clinical trials and to parse the benefits and side effects of PD medications. Often he seems measured in his responses, as if driving with one foot hovering over the brake pedal. I’ve wondered if this is his way of protecting me from both not getting my hopes up and not becoming discouraged. If so, for this patient at least, he’s chosen an unnecessarily cautious way to drive; I’ve learned enough about Parkinson’s that he should feel assured that I can handle whatever uncensored news he might have to share with me.
One example of how my online research and our Parkinson’s Facebook group has spurred interactions with Dr. Bright that wouldn’t have occurred in pre-Internet days is our ongoing conversation about the risks of taking levodopa. Dr. Bright has consistently assured me that I have little to fear with levodopa, especially since I’ve responded very well to it for over five years now. I am highly motivated to believe in the safety of this medication, as I’m dependent on it to be able to walk. However, a highly controversial topic in our Facebook group has been when to begin levodopa therapy and when to increase the dose once you’ve started. Those who’ve delayed taking it make well-researched, persuasive arguments against the drug: the possibility of its being toxic long-term, disrupting other brain chemicals, losing its efficacy over time, or causing the involuntary movements of dyskinesia. Their vehemence has set off alarm bells for some of us who rely on levodopa. There are also plenty of Internet testimonials by doctors and other health practitioners that warn of levodopa’s potential dangers. Movement disorders specialists, frustrated that some patients are reluctant to accept their medication protocols, have recently started referring to this particular patient concern as “levodopa phobia.”
Dr. Bright informed me of a 2014 study that has provided MDSs with research that supports their conviction that levodopa is still the “gold standard” medication for PD. 1,620 Parkinson’s patients, some treated with levodopa and some with dopamine agonists and other PD meds, were followed for seven years. By the end of the study, the levodopa group demonstrated greater mobility and fewer side effects than the agonist group. This is great news for many people with Parkinson’s and for doctors prescribing levodopa. But the study’s participants were all 60 years or older. What about YOPD patients who are 30 or 40 years old when they’re diagnosed — will levodopa still be efficacious for them way down the road? No one will know until a decades-long levodopa study of people with YOPD has been done. Until then it seems reasonable, even prudent, for YOPD patients to worry aloud about the long-term effects of levodopa or any other PD medication. The professionals taking care of us don’t all agree. In a 2014 article about the levodopa study on the website of one of the nation’s three largest Parkinson’s foundations, I read:
Patients and family members should also think twice about raising (their) concerns over levodopa during doctor visits. Bringing them up, especially at the start of an appointment, could take precious time away from health concerns that need to be addressed.
I was surprised that this bit of paternalism — the word used to describe a much-discussed dynamic in the doctor-patient relationship — had crept into a message from a foundation whose mission is to be patient-centered. Alas, paternalism has persisted for centuries in the medical field. Atul Gawande writes in his book, Complications, that as recently as the early 1990’s:
…doctors made the decisions; patients did what they were told. Doctors did not consult patients about their desires and priorities — and routinely withheld information — sometimes crucial info, such as what drugs they were on, what treatments they were being given, and what their diagnosis was. Patients were even forbidden from looking at their own medical documents; it wasn’t their property, doctors said. They were regarded as children: too fragile and simpleminded to handle the truth, let alone make a decision.
Until recently, my doctors shared my records with me if I asked, but some made me feel uncomfortable about it. In the past couple of years, most hospitals have created online “patient portals” where patients can look up their physicians’ reports and tests, as well as stay updated on procedures and immunizations that are due. Vestiges of the old system remain, however; when I’m leaving a medical laboratory and ask for a copy of blood work results, unless the request has been made in writing on the lab slip, they deny my request. “It’s my blood!” I’ve had the urge to remind them. “What could possibly belong more to me than my blood?” In his book, The Decision Tree, Thomas Goetz writes:
It’s not that doctors don’t want the best for their patients; they do. But there’s a persistent paternalism in the profession, a fretting over how capable ordinary people are of understanding medical info and acting on their own behalf. A 2007 survey of primary care physicians…found that most were unprepared for patient-driven medicine, and nearly all were skeptical of the health information patients receive from government or insurance company Web sites. Such opinions reflect the strong conservative tradition in medicine, one that puts faith in the physician above all else. In medicine, paternalism isn’t a dirty word; it’s the default mode.
Paternalism might have made sense in an era when patients didn’t have access to medical information and relied on their physicians to be all knowing and to make good decisions for them. In the past, doctors had more time — and thus familiarity — with their patients, which meant their directives were more informed. And paternalism suits some patients: for whatever reason, many are not eager to engage with their own health problems, let alone research them, and prefer to have someone else make their medical decisions. Perhaps also at play in the persistence of paternalism is that some doctors believe they need to maintain a façade of authority, no matter how uncertain they are, in order to gain and preserve their patients’ trust. But in this day and age, a physician’s assumption that she always knows what’s best — both physically and psychologically — for an adult patient is fundamentally flawed. When a doctor is reluctant to be forthcoming with her patient or is unreceptive to a patient’s wish to be participatory in his own health care, an inequality is established that compromises the potential for a collaborative, professional relationship.
During my conversation with Dr. Bright, I didn’t have the courage to directly express how dismissed Hadley felt by his admonishment not to “obsess” and by his reassurances that felt empty to her. I’m sure his intention, conscious or not, was to be protective, rather than paternalistic. His decades-long experience with patients of all kinds probably has made it difficult for him to tailor his approach to meet the particular emotional and intellectual needs of each of his patients. I have no doubt that, as he wrote in his email to Hadley, he’s had many patients who have needlessly suffered while imagining the worst about their illness. But by defaulting to this assumption about Hadley, he was not seeing her or her disease.
Both Dr. Bright and Dr. Youngman chose to deliver a confident diagnosis for Hadley rather than remain in uncertain territory; Dr. Bright affirmed the original diagnosis, Parkinson’s, and Dr. Youngman went so far as to embrace an entirely new disease, primary lateral sclerosis. Dr. Jerome Groopman discusses uncertainty in his book, How Doctors Think:
When a physician encounters conflicting or unusual symptoms he becomes vulnerable with the uncertainty…Physicians, like everyone else, display certain psychological characteristics when they act in the face of uncertainty…Does acknowledging uncertainty undermine a patient’s sense of hope and confidence in his physician and the proposed therapy? Paradoxically, taking uncertainty into account can enhance a physician’s therapeutic effectiveness, because it demonstrates his honesty, his willingness to be more engaged with his patients, his commitment to the reality of the situation rather than resorting to evasion, half truths and even lies.
By avoiding uncertainty, Dr. Bright and Dr. Youngman took Hadley even further from finding an answer. Their certainty, because it was unsupported by Hadley’s experience with her illness, created not only more uncertainty for her but also nearly crippling self-doubt, because in the past, she’d so often been made to feel that her symptoms might not have a diagnosable cause.
There can be comfort in not knowing a diagnosis; while there’s ambiguity, there’s a flicker of hope that what’s ailing you is not as serious as you’ve feared. But not knowing also means you’re stuck. Even when you can’t control the disease you’ve been diagnosed with, the diagnosis allows you to plan, to focus on what you can control in life. What Hadley wanted from the specialists she consulted was an honest, thorough and respectful appraisal, even if it meant they’d continue to bumble around in the shadows with her, looking for a light switch.
Instead, they stopped looking, leaving her alone in the dark.