“Why must design for a patient’s comfort be a sick joke?”
When the Professor asked the above question in 2004, he did so as both a patient and as a designer; as someone who has been a long-term recipient of treatment for chronic medical conditions, and as a designer and teacher who, in receiving those treatments, found himself flummoxed as to why their net design effect was so debilitating.
“Why must design for a patient’s comfort be a sick joke?” became the subhead for an article in the long-deceased ID magazine [1954-2009], its passing after 55 years due, unfortunately, to another sick joke: in this case, how could a design magazine perish precisely when interest in its subject matter was at an all-time high and climbing?
When those 11 words were written 11 years ago, in another neat bit of symmetry, they weren’t merely true in general: they were also specifically true for The Professor. His life revolved around the dialysis treatments he had been getting for four years by that point. For those readers unfamiliar with dialysis, it is a medical therapy used to cleanse the patient’s blood to compensate for the failure of both kidneys [what is called End-Stage Renal Disease[; the treatment of ESRD requires machines, IV fluids, needles, tubing, filters, purified water and a host of nurses, technicians and doctors. It is known for keeping its patients alive, but not for enabling their return to work, health or even allowing them to feel particularly well.And four years in, that was exactly where The Professor was at: surviving but perpetually challenged to do much more than that. Goaded on by the experiences at his dialysis sessions at California Pacific Medical Center [CPMC], he eventually willed himself to painstakingly document the flaws in the designed behaviors, objects and spaces around him. There were dozens of deficits that The Professor ended up identifying, and, of those, five were selected for the ID magazine article.
Of course, a great deal has changed in the healthcare industry since 2004, and one of the most significant changes has been that dialysis has now been acknowledged to be “big business.” Consequently, most dialysis patients now receive their dialysis treatments at stand-alone clinics or private-enterprise businesses; at CPMC, the new owners used the old hospital’s space and hired most of the previous medical staff—all they needed to do was hang out a new shingle and plug in a new billing system.
Such for-profit dialysis centers have taken patients from hospitals like CPMC, making ESRD a major growth area in managed health care. ESRD has also become an increasingly common diagnosis as a result of our documented societal tendencies toward both obesity and diabetes [driven by an over-consumption of fats, sugars and salts]. In fact, obesity and diabetes are the two biggest precursors [and causes] of ESRD, accelerating the epidemic of kidney disease throughout the American population requiring dialysis at unprecedented rates.
In 2004, The Professor’s dialysis sessions took about four hours and were done three days per week [on either a M-W-F or Tu-Th-Sat schedule]. To treat his ESRD, the blood was taken from his body via the insertion of two large needles [one to take the blood out, the other to put it back in] and delivered via polyvinylchloride/PVC tubing to a pump that continuously pushed it through the disposable filter of the artificial kidney machine; at that point, the blood is returned to the body. It is the same process for most every dialysis patient; the only variation is the access site, which can be anything from a surgically expanded vein in the arm [called a fistula] to a permanent plastic device [called a central venous catheter] that is sewn into the jugular vein at the neck or tunneled into the chest into a major vessel proximal to the heart.It sounds decent enough, but it isn’t. Trying to do what nature does by way of the dialysis machine in a mere four-hour period shows without a shred of doubt that the organ beats the man-made replacement every time; the artificial kidney is not yet a successful biomimetic construct; in no way does it rival nature’s solution. The dialysis process doesn’t come close to matching the kidney’s incredible ability to filter and balance fluid levels in the blood or control its levels of electrolytes and minerals, all in the service of a dynamic homeostasis that typifies human health. Once again, nature is poised to be the great teacher, the primal form-and-function-generator for not only what is outside of our doors but also for what is on and inside our bodies.
As designers—by The Professor’s estimate, the most visually-literate, socially-focused group of practitioners to ever bring those skills to their respective projects—we should be awestruck by the design of our body’s component parts, its stunning overall coherency. We should be equally gobsmacked by the integrated visual, functional and material basis of our human body’s many interwoven systems. And it is we designers who should take the lead in translating all of that insight and intel into a new empathic paradigm for treating and healing those people who have had the grave misfortune to become patients.
Patients routinely crashed during or after their sessions due to fatigue, headaches, heart issues, low blood pressure, nausea, and stress. The Professor saw some patients lose consciousness while tethered to their machines, and he witnessed a few patients actually die while connected; the death rate for dialysis patients versus the general population is eight times higher. The unit at CPMC had no plan—no designed option for ameliorating the circumstances—other than to pull the hanging curtain around the deceased so as to symbolically hide the body [even as it haunted, and in some instances, scared the bejesus out of those nearby].
As if the previous reasons weren’t sufficient enough to compel systemic shifts, dialysis is also ridiculously expensive. The federal government, through Medicare, pays 80% of the costs associated with catastrophic health cases such as ESRD, with dialysis costing about $100k per patient each year, $9B annually overall. Presently, the only real solution is to transplant a healthy kidney from either a living donor or a recently deceased person into a dialysis patient. Although kidney transplant surgery is initially expensive, it drops the annual cost to $30K/year or less after that—and the transplant is the only way an ESRD patient can ever feel good again or likely return to being a tax-paying, job-holding citizen.
The numbers are daunting:
– Over 450K patients are presently receiving dialysis.
– Over 120K people in 2010 were on the national waiting list for a kidney transplant.
– By contrast, there were approximately 10,000 people on the 1980 national waiting list; 31,000 people waiting on the 1990 list; and, 71,000 people on the 2000 list.
– The average life expectancy once a person is on dialysis is 5-10 years, depending upon other medical conditions and starting age; for example, patients aged 40-44 years survived an average of 8 years while patients aged 60-64 survived an average of 4.5 years.
– In 2013, ESRD was the 9th-leading cause of death in Americans, ahead of both breast cancer and prostate cancer.
– After one year of treatment, those on dialysis have a 20-25% mortality rate, with a 5-year survival rate of 34% [66% are dead].
The short “rant” of an article is presented completely in the text below; as far as The Professor knows, it has never previously found a place anywhere on the internet. So here it is, presented anew.
[Beginning of the 2004 article]
Original citation: ID magazine, “Form Follows Organ Failure: Why must design for a patient’s comfort be a sick joke?” March/April 2004, p. 31
“As the economy faltered in the fall of 2000, so did my transplanted kidney. By December it was all over. No urine. I went from vice-president at frogdesign’s San Francisco office one Friday to dialysis patient at California Pacific Medical Center the following Monday. Nothing can prepare you for a shift like that, even if you know it’s coming. The distance between actively working as a designer to being a long-term, chronic-care recipient is so vast as to defy description, but it happened to me, it happens to other people, and it could happen to you, too.
That is how I became an accidental expert on health care. It is an Orwellian realm where life is sucked away by the very surroundings that purport to sustain it. It is a place where the values I have fought for my entire career—cultural connectedness, cognitive engagement, pattern recognition, orientation, and a form-follows-meaning approach—were rendered moot by shitty products and environments that were envisioned by technicians and implemented by accountants.
But couldn’t instruments and medical environments be designed so that patient’s needs come first?
Couldn’t the complex web of interaction s between fixtures, tools, instruments, garments, nurses, doctors, technicians and patients—and between mind, body, spirit, color, light, material, and space—be the inspiration for a revolution in health-care design?
Couldn’t we designers go beyond our normal scale and scope of projects to aspire to something bigger than the next Gold IDEA Award—couldn’t we mass-produce hope while we humanize health care?
Let me describe a few of the dozens [if not hundreds] of products and experiences that make someone who is already suffering suffer more.
EXHIBIT A: The Elevator Button
A classic example of how important even the simplest physical user interface can become. The elevator button at dialysis lights up pale pink on a pale pink vinyl-wallpapered wall. The contrast is so poor you can’t tell if the button has been pressed, especially if your eyesight is failing or you are exhausted from dialysis—conditions that probably apply to more than half of the elevator’s users.
EXHIBIT B: Dialysis Version of the La-Z-Boy
At my dialysis unit there are 18 jaundiced yellow-brown reclining vinyl chairs that have been retrofitted with wooden bases and sets of amateur-hour wheels so they can be moved for floor cleaning. Depressing to look at, and worse to sit in, each chair is so uncomfortable that it needs separate arm pillows, butt pillow and blanket for the back. Even after all this Post-Market Product Alteration, the chairs remain unresponsive, unsupportive sweaty torture chambers that patients endure for [a minimum] of 12 hours per week.
EXHIBIT C: The Dialysis Machine
When I am sitting in any of the La-Z-Boys, it is impossible to see [or read] the dialysis machine’s control panel. I cannot tell how much time I have remaining [in that day’s session], what my blood pressure or pulse is, or where any of the machine’s metrics have been set. By design—or [by] lack of appropriate design—all of this information has been kept from me. This is disturbing not just because I want to know it, but also, ironically enough, because I am routinely encouraged by advertising, social workers and nursing staff to be proactive about my care.
EXHIBIT D: The Intrajugular Catheter
To be dialyzed, most people have a specially constructed arterial connection in their arm called a fistula. The fistula is the access site for the two large dialysis needles. When mine failed [my fistula], I had to have an intrajugular catheter—a medieval contraption of plastic tubes that made infection a constant worry—sewn into my neck. On the outside, two flexible tubes hung down and were taped an re-taped to my neck. Each tube was controlled by a sharp-edged plastic clamp that rose above my jawline and dug into the soft skin of the neck. Clearly, whoever made this never had to have one inserted. If he or she ever did, the materials and details would have been vastly different.
EXHIBIT E: Hospital Cuisine in General
With Whole Foods Market, the world-class restaurants of Palo Alto, and several small organic farms nearby, Stanford Hospital [where The Professor has also spent too much time as a patient] should set the standard for fresh, healthy, appetizing food. But it doesn’t. Stanford out-sources all its food needs to Marriott. When I was hospitalized five times in 2001, my wife, Mara, had to bring me food from outside so that I could get at least one decent meal every 24 hours. After charging $5,000 per day for a room, can’t they afford fresh food? How can they not understand that nutrition equals health?
– If you are a designer, get involved with health-care design before you have to be a recipient of it.
– Better health-care design does not have to cost more money, but it must involve greater sensitivity [empathy and a sense of connectedness].
– I don’t want you to die, but if you do, make sure your organ donor card is signed. I am one of 80,000 Americans currently waiting for an organ and I would not mind [re]using your kidney—once you are done with it.”
[End of the 2004 article]
So here we are in 2015 and not enough has changed. Not enough has been done for the person sitting in the La-Z-Boy, splayed on the examination table, or trying to have a decent meal while being an in-patient. We [the American government “we”] are still paying through the nose for dialysis and all we are really getting is furniture, clinical spaces and instruments galore that remain uncomfortable, inconvenient, outdated and invasive. As a recent UCSF study noted, “Dialysis is exhausting for patients and fraught with morbidity and eventual mortality.”
More than a decade after the article’s print publication, the message that The Professor hoped to propagate is even more poignant now. The need for answers to the questions it raised about a patient’s right to well thought-out interactions, improved interfaces at every scale, accessible information displays so the patient can self-monitor, comfortable medical implants that integrate with the body rather than irritate it, and the right to get and eat healthy meals in a hospital setting are only more profound today.
Could dialysis be based on wearable therapies? Of course it could. New thinking [from new stakeholders with new budgets] is needed for exploration into different possibilities with respect to materials, user scenarios, technologies, color, light and space. Dialysis needs to be re-thought from its antiseptic bathtub floor upward; it needs not only what the design profession’s vaunted creative process can offer, it also needs to be recast and examined in a way that only “design thinking” can deliver but must unmistakably be patient-centered and no longer based on an accounting or administrative model. There is change occurring in the dialysis area—but not enough, and not quickly enough—especially for the 12 patients who die every day and their families and friends, coworkers and colleagues, who have no choice but to accept the inevitable demise of their loved one.
As for The Professor, he is still in the trenches, receiving the required quantity of dialysis every week, day-in and day-out. But [in-between], he remains determined not to use his illness as an excuse for any and all deficits he may have. He does whatever he can to do the things that matter most to him whenever he can do them, a mapless, ceaselessly shifting [beneath his feet] method that requires him to treat his singularly mutated body as something more like an artful experiment, a way of living life with passion and purpose despite all of the defects, indignities and hurdles they represent, and that’s why they call him The Professor.