Crowdfunding As Socialized Healthcare

Charity, ostensibly a central moral and social American institution, is alive and flourishing–online, on crowdfunding sites, as thousands and thousands of perfect strangers and sometimes acquaintances and friends and family, line up to donate to the latest plea for help. (Perhaps someone needs a vital organ transplant, extended chemotherapy and radiation, or a new, life-saving alternative therapy; or perhaps, like most Americans, they went into a hospital hoping to emerge healthier, and instead, found themselves facing a foreclosure-inducing medical bill.) As Bloomberg reports in an article unironically titled ‘America’s Healthcare Crisis Is a Gold Mine For Crowdfunding–later changed to ‘American Health Care Tragedies Are Taking Over Crowdfunding’:

Crowdfunding platforms such as GoFundMe and YouCaring have turned sympathy for Americans drowning in medical expenses into a cottage industry….Business is already booming, and its leaders expect the rapid growth to continue no matter what happens on the Hill. “Whether it’s Obamacare or Trumpcare, the weight of health-care costs on consumers will only increase,” said Dan Saper, chief executive officer of YouCaring. “It will drive more people to try and figure out how to pay health-care needs, and crowdfunding is in its early days as a way to help those people.”

Indeed:

Growth has been rapid….one million campaigns set up over the previous year had raised $1 billion from nearly 12 million donors. By February 2016, the total was $2 billion. In October 2016, it was $3 billion, from 25 million donors….GoFundMe had indicated that $930 million of the $2 billion raised in the period the study analyzed was from medical campaigns….medical fundraisers made up 70 percent of GiveForward’s campaigns. The combined companies have 8 million donors who have contributed $800 million to a wide range of campaigns. A big part…was donated to medical campaigns…It was approaching 50 percent of all fundraisers at YouCaring before the acquisition, and the growth rate is set to triple this year.

Indeed, no matter what the flavor of the current healthcare system, it will not take care of most Americans, and neither will it do anything to drive down the rising costs of healthcare. Short of progressive taxation, a national single-payer system, and extensive structural reform to bring the American healthcare system into line with the ‘best practices’–both financial and clinical–of the best national healthcare systems in the world, Americans look destined to continue pay the highest rates for healthcare in the world, while receiving outcomes that can be described, at best, as ‘mediocre.’ In these conditions, the success of crowdfunding campaigns is entirely unexpected and unsurprising; ‘look to private resources’ is the fairly explicit message of the current healthcare system, and it is there that Americans have turned. ‘Private resources’ are normally taken to mean financial support from family; Americans seem to have found a much larger family of sorts; a blessing of a kind, one supposes.

But mostly, reactions to this state of affairs can hardly afford to be sanguine. Such methods of paying for healthcare costs suffer from too much contingency; some campaigns succeed, yet others fail. Perhaps your pitch was not ‘moving’ enough; perhaps you did not include the right pictures of cute families; perhaps potential donors were financially exhausted. The health of the citizens of any country, let alone one with pretensions to greatness, should not be riven by so much uncertainty, so much dependence on the unpredictable largesse of others.

The Doctor And The Silenced Patient

In Confessions of a Medicine Man: An Essay in Popular Philosophy (MIT Press, Cambridge, MA, 2000, pp. 109-110) Alfred I. Tauber writes:

Health care providers have to listen, respond, and generally account for the subjective experience of a patient’s complaint. So much of our discontent can be traced to the too little time the physician spends with a client, and how poorly a true dialogue develops. Focusing upon the clinical narrative, the patient’s rendition of the disease experience offers crucial insight to the physician, both as scientist and empathetic, that is, ethical, healer. Beyond obtaining information that may be important in tending to the patient’s particular physical needs, a patient’s own description of the illness presents the physician with the problem of suffering, and the profound disruption, uncertainty, and pain that disease imposes. To ignore this aspect of illness is to deny the patient’s fundamental humanity and relegate them to the status of object.

In an older post titled Taylorism and the Doctor’s Office I had complained about the slavish devotion to efficiency and throughput maximization visible in the work of the physician; an important component of the dissatisfaction I felt then, one not fully articulated, was that my physicians, my healers, were simply not listening to me:

The patient, meanwhile, many of his questions unanswered, his possible inputs to the diagnostic process ignored, returns home, disquieted by the experience, disillusioned by the wonders of face-to-face contact with a fellow human being, and supposedly a healer at that.

This is a real frustration with serious consequences. As a patient, I have a great deal to tell my doctor about my personal experience of the illness: this is how it feels on the ‘inside’; this is how it affects the way I move, the way I relate to my body; these are the kinds of things I want to do and cannot do; this is how I now see myself in relation to the world and my body. I see these as important inputs into the healing process; I see them as descriptions of my dis-ease, a tabulation of the ways in which I am no longer whole and long to put back together again. My illness is not just a set of physical markers; it is an impairment of my being in this world, and I am best placed to report on a very particular aspect of that fractured relationship.

Because I consider myself a good observer, and a good reporter, I come to each doctor’s visit with a sense of anticipation: I will place these reports and descriptions at the service of my doctor, and he will combine them with his expert physiological, medical, and scientific knowledge to produce the optimum healing package. Together, doctor and patient, interacting with each other, will move to a new co-anchored state of being: the doctor becomes a better doctor by healing, by having his skills honed on this new ‘challenge’; I will return to good health.

But my doctor has no time for such niceties; he cannot be bothered to listen to his partner; he cannot wait to hear the ‘other side’ of the story; he is only concerned with test parameters, visible observations, and quick slotting into categories (and the submission of an insurance claim for payment.) To listen to a patient will interfere with the most efficient ‘best practice,’ the one recommended by the management consultant group in charge of his clinic or hospital.

The patient’s experience of the illness falls by the wayside; it is the least important part of the modern ‘healing’ process. And with that assessment, the patient becomes just as marginal, ready to be objectified.

Hail to the Mighty Nurse

When I was a mere nine years old, I underwent a tonsillectomy, a minor operation that surprisingly enough, in those days, required general anesthesia. My mother spent as much time as she could with me in the hospital, but my constant companions otherwise were the military hospital’s nurses. I might not have been a teenager, but I was still, mysteriously enough, old enough to develop crushes on many of the nurses who did the rounds and attended to my many needs. They wore impossibly starchy uniforms, as befitting those serving in the armed forces; they were prim and proper; they were firm, kind and efficient. I wasn’t sorry to say goodbye to the hospital ward but I did feel more than just the passing pang on waving goodbye to my merry band of temperature-taking, brow-stroking, bedsheet-smoothing caretakers.

Some thirty-five years on, nurses don’t cease to impress. My daughter’s entry into this world was most proximally brought about by the deft handiwork of an obstetric surgeon, but it was considerably and significantly facilitated by a hardworking and attentive group of nurses. From initial admission to prep work to recovery, a nurse was always there, providing expert, experienced care, offering words of advice, caution, and sometimes gentle reprimand too.

My wife and I spent two nights in a maternity ward after the birth of our daughter, and from the time we entered its rooms to the time we left, we were in the care of its nursing staff. I described my anticipation of my firstborn as a mixture of excitement and terror, and the most active factor in the mitigation of that terror was the maternity ward nurse. I always expected fatherhood to involve a great deal of on the job training; I didn’t realize that my first and most visibly accomplished teachers would be a group of nurses.

They knew how to handle newborns with just the right mix of firmness and gentleness; they were champion swaddlers and they knew how to teach its moves to an utter novice like me (I still haven’t mastered the really, really snug wrap, but I’m getting there, keeping their finished product as an aspirational goal); they knew how to change diapers with ease and minimal fuss (and they expertly shepherded me through my first diaper change disaster too); they were, in all the important ways, my hand-holders through my first trepidatious steps through the valley of fathering.

After we left the hospital to return home (but possibly even before) I wondered about how many families the experienced nurses had seen entering their wards with their newborns in tow, how many lives they had kicked off, how many anxious parents’ queries they had answered, how many anxieties they had smoothed over, how many bumblers they had turned into quasi-competents, able to approach the task of rearing a child with just a little confidence.

The world of medicine has often not taken adequate care of these indispensable components of the medical system; doctors have often not acknowledged how their work would be impossible without their assistance; and more than one reformer of the medical system has sought to underwrite their vision via a diminution of their role. They are often invisible, unacknowledged, and unappreciated. Be nice to one the next time you see one or need one.

Note: Support nurses unionizing!

Taylorism and the Doctor’s Office

From this vantage, distant point in my life, childhood meetings with doctors, whether at home–they still made house calls–or whether in the doctor’s clinic, appear as encounters with quasi-avuncular figures, benevolent, mostly-solicitous contacts with a wise, ostensibly caring person. I experienced my share of childhood illnesses, suffered from minor ailments, and almost always looked forward to meeting the doctors who treated me. Consultations took place in their office; preliminary wait in a reception, and then entry into the sanctum sanctorum; I sat on a stool next to the doctor’s desk; the doctor was nearby, walked around to his desk to examine me, and sometimes for more extended examination, moved me to an adjoining recliner. While the waits in the office were sometimes onerous, once told the doctor would see you, you got just that – a ‘meeting’ with the doctor. The doctor’s consultation space seemed made for healing.

The times, they’re a changin’.

To visit a doctor now is to experience a cold, unrelenting blast of Taylorist air, a journey through a land dotted with toll-collectors, each aspiring to rapid and efficient quota completion. You make an appointment and wait in the reception like you always did.  Then you are brusquely asked for your insurance forms, and made to fill out–just like at every other doctor’s office that you’ve been to before–a pile of horribly photocopied forms that ask for details on your medical history, whether you’ve understood your privacy rights, and a host of other legally required disclaimers. Then you wait again. When called in, you don’t meet the doctor. Rather, you are ushered into a small consultancy room, cold and bare, while an assistant screens you by conducting a preliminary examination. (You might have to wait a bit before the assistant shows up.) This preliminary examination over, you are left alone again, sometimes clad in a paper gown.

Then, the doctor–whose voice and form can be dimly discerned as he rushes about in the corridors outside–shows up; clearly in a whirl and a tizzy combined, he is brusque, efficient, and keeping an eye on the clock and his production schedule, his throughput. He reads the pre-examination form quickly, asks a few rapid questions–more often than not, not listening too closely to the stream of information a patient can provide on his body, his ailment–dispenses a quick, snap judgment, and leaves. A battery of tests is ordered; pharmaceutical prescriptions written; and you are told that the ‘assistant’ and the ‘receptionist’ will tie up loose ends. You change, head out the door, are reminded by the receptionist that the co-payment is due, and then, it’s all over. You emerge, blinking, into the sunlight, feeling not so much healed, but as if you had been trussed up, placed on an assembly belt, and had several pounds of flesh withdrawn – by the insurance company, by the doctor’s clinic.

The doctors maximize movement through their clinics; the tests ensure expensive bills can be sent in for insurance claims; the prolific prescriptions pad pharmaceutical profit accounts. The patient, meanwhile, many of his questions unanswered, his possible inputs to the diagnostic process ignored, returns home, disquieted by the experience, disillusioned by the wonders of face-to-face contact with a fellow human being, and supposedly a healer at that.