Shannon's Story: Health Care and Our Need for Cultural Healing

We in the United States have a health care system that creates (rather than eases) burdens for those battling critical illness. We have it all backwards.
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Originally posted in August 2009.

We must rapidly begin the shift from a 'thing-oriented' society
to a 'people-oriented society.' -Martin Luther King, Jr.

I know that everyone has a personal story related to health care. This is mine. Well, actually it's my sister-in-law's. I started to write this piece about nine months ago, but I could never bring myself to finish it. Putting to paper the pain and sadness of Shannon's struggle was just too much for me. But I can't put it off any longer because the current debate about health care has shed light on some realities that although daunting, are just too serious to ignore.

To put things into context, I have to first share our story.

Just over one year ago, my then 37 year-old sister-in-law was diagnosed with an aggressive form of leukemia called AML (Acute Myelogenous Leukemia). Her subtype carries an especially poor prognosis and her only hope, we were told, was a bone marrow transplant. Fortunately, her brother was a match, and on September 3rd of last year, Shannon had the procedure at Stanford Medical Center. On December 17th, we learned she was in remission and she, my brother, and their two young sons ages 1 and 4 had the best holidays imaginable.

Then on June 25th, after just a few days of her feeling a bit under the weather, we got the news that knocked the wind out of all of us- Shannon's leukemia was back in full force. Anything over 5% "blasts" (immaturely formed white blood cells) is considered leukemia. Shannon has been hovering around 90% blasts. Relapsing after a BMT is a very ominous sign and because Shannon's form of AML is considered chemo-resistant, the doctors told her quite bluntly that there was no established medical protocol for the situation she is now in and that there was not much they could do for her. They gave her 1-3 weeks. That was seven weeks ago.

Shannon has a powerful spirit and it is difficult to capture in words the strength of her will and determination, but perhaps recounting this brief interaction will help: when the doctor called the house to talk to Shannon the night her relapse was confirmed, she listened patiently as he spelled out the two very bad choices (die at the hospital or die at home), then said without a trace of hesitation, "I don't like those options. What else do you have?"

Shannon is determined to live. So after much back and forth between two hospitals, her insurance companies, and numerous doctors, she was admitted into a clinical trial at Stanford for patients with relapsed AML. According to the trial's lead doctor, she should have shown results by now. That she has not leads him to conclude that it was not successful. Meanwhile, she has been in and out (mostly in) the hospital for the past two weeks with infections and fevers, sometimes approaching 105 degrees. And yet, through it all, she still feels -- for lack of a better phrase -- very firmly ensconced in this world. Which brings us to her present dilemma: how to find a way to heal when all the conventional medical routes have been exhausted and the doctors have effectively thrown in the towel.

It doesn't seem like a coincidence to us that there's a public discourse about health care happening at the same time Shannon is entering the most trying part of her struggle. As the debate rages on amongst angry taxpayers, anxious insurance companies, concerned health care providers, and strategic politicians, a deeply disturbing subtext is emerging with profound clarity. We -- in the West generally, and in the United States particularly -- approach matters of health and the treatment of illness and disease from an extremely unhealthy perspective. Somehow we've come to view our health (in all senses of the word) in a disconnected, compartmentalized way, both at the level of the individual and at the level of society. At the individual level, health care in Western medicine tends to focus on body (often one specific part) while mostly ignoring the mind and spirit. At the societal level, health care is focused mostly on treatment rather than prevention and it tends to isolate the patient from his/her larger context or environment. It is mind-boggling to hear incensed Americans shouting in health care town halls that they'll "be damned if they're gonna pay for someone else's medical care!" The phenomenon raises so many questions, starting with: Who are we? Have we really come to view everything as a zero-sum game (a win-lose situation)? Do we really see our interests as mutually exclusive rather than shared? How is it that as a society we have not already agreed that our job is to take care of each other? And until we agree on that, do we really deserve the word "society"? Can healthy people even emerge from a sick society?

But I digress. The task facing us is so daunting that perhaps the most prudent thing to do is to approach it in manageable steps. So let's start by taking a closer look at the basics.

It is universally understood that good food, lots of sleep, and a peaceful environment are all essential for a strong immune system and effective healing. After all, if we can agree that stress and a poor diet makes us ill, then it's only logical that the opposite of those things will help heal us.

However, during her stays in the hospital, Shannon has had access to none of the things listed above (at least officially). And as anyone who's stayed a night or two in a hospital can attest, it is nearly impossible to get a good night's sleep. In fact, from what I've observed, it's highly unusual for a person to be allowed to sleep more than an hour undisturbed. In some ways it's understandable- medical providers need to come in and out of the patients' rooms to check vitals, administer meds, and perform other routine but necessary tasks. But it strikes me as bizarre that a person who is trying to heal cannot get a decent rest in the hospital. Say that out loud to yourself: "If you're a hospital patient in the United States, do not expect to get a decent night's sleep." Doesn't it sound bizarre?

Then there's the food. Even if you've never spent time as a patient in an American hospital, you are familiar with the jokes. Hospital cuisine is typically ranked alongside airline cuisine in terms of its freshness, nutritional value, and general appeal. On any given day, the food they bring my seriously ill sister-in-law is bland and rubbery. It's often unidentifiable. How can a person be expected to survive -- much less thrive -- on that fuel? A body that is fighting off an aggressive disease like AML needs significantly more nutrition than the average healthy person, but ironically, they are provided with less. How can we make sense of that?

Aesthetically, the hospital environment leaves a lot to be desired as well. We know that the human psyche and spiritual wellness is affected by the body's physical surroundings. Warm, soothing colors, fresh air, and a comfortable, homey environment all ease stress and contribute to the ability to relax. Many of us put significant effort into making our homes places where we can relax, de-stress, and heal ourselves: isn't it a no-brainer that we'd do the same thing in our institutions of healing? Yet most hospitals create atmospheres that are cold, harsh, and unwelcoming- all of which make it that much more difficult for a person to heal.

And finally there's the bureaucracy. I'll be completely blunt: I regret that I don't have it in me to ponder the countless tragedies of the millions of people in this country without health insurance or the tales those who were dropped right before or after some critical procedure. I barely have it in me after the ups and downs of the past year to get out these few words. But I do need to say this. A person who is seriously ill should not, in this -- the world's wealthiest and most democratic country -- ever have to worry about anything except getting better. How is that not completely obvious? Isn't "taking care of the least amongst us" the essence of the Golden Rule, civilized society, and every major religion? When Shannon learned she was a candidate for the medical trial mentioned above, there was a significant amount of legwork (phone calls, paperwork, information sharing, etc.) that had to be done to make it happen. Guess who did it all? Shannon herself. Neither hospital (Kaiser or Stanford) offered to help her with the coordination of the bureaucratic red tape, and decision-makers on both sides insisted on going through her for their communication. So between transfusions and bone marrow biopsies, Shannon spent hours upon hours making phone calls, filling out paperwork, and following up (which, as it turned out was necessary because the ball was dropped several times along the way by various hospital employees) so that she'd just have a shot at this treatment. And now that the doctors are out of ideas, it is up to Shannon to make all the future decisions about her medical care. The knowledge and technical information she needs in order to make an informed choice about her next steps are overwhelming. Yet if she is going to survive, she has no choice but to forge ahead.

And here's the kicker: Shannon is one of the unbelievably lucky ones. She is on my brother (a fire captain)'s government-run health care plan.If the quality of her health insurance had been one notch down, Shannon would have been gone long ago, as was the case with the sister of a close family friend diagnosed with the same disease a few months after Shannon. She died five weeks after her diagnosis because her poorer-quality care did not provide for the induction chemotherapy necessary to save her life. So Shannon (and those who love her) are very fortunate that she's had access to decent quality care (by American standards), but even despite that, she's been burdened enormously by the difficulties in getting quality rest, the daily struggle for good nutrition, and the bureaucratic nightmare that is the medical insurance industry. Shannon has it good. But imagine for a minute what these challenges would have been like for someone less insured, less educated, less resourceful, less spiritually resilient, or with less access to a strong family and friend support system. Would they even stand a chance?

So back to the subtext mentioned above. We in the United States have a health care system that creates (rather than eases) burdens for those battling critical illness. We have prevailing societal norms that encourage the promotion of self-interest at the expense of others' wellbeing. We have a strongly materialist culture that teaches us to view ourselves as disconnected from one another, rather than as deeply interconnected.

We have it all backwards.

We need comprehensive health care reform -- that is obvious. But beyond that, we need to begin the shift to thinking about our own health and the care of others as interconnected. How can we truly take care of ourselves if we aren't taking care of each other and vice versa? As I've been pondering these questions over the past months, it has begun to occur to me that my background in nonviolence gives me a unique grasp on the challenge here. Because nonviolence is essentially a form of healing (in most cases, a relationship), the principles that govern the field of nonviolence apply to the notion of healing the body. Probably the most important shared principle is the idea that we are all connected, not just in some metaphorical sense, but metaphysically, at the quantum level, through the constant exchange of energies, molecules and atoms. When a brave activist in a repressed country stands up to a menacing police officer pointing a gun in her face, it is not unlike a courageous spirit standing up to a diseased body. In both examples, if the confrontation is based on adherence to truth (what Gandhi followers know as "satyagraha") and nonviolence ("ahimsa"), a transformation is possible. In the field of nonviolence, the ability of that unarmed activist to convert the armed police officer to her side with just her courage and adherence to truth is called "integrative power." That same approach can be used towards healing the body. But just as a nonviolent movement needs a critical mass in order to succeed, the human spirit needs solidarity with its environment, including other human beings around it.

Health care reform should, at its core, be about healing. But in order to achieve anything meaningful, we must first stop thinking about ourselves and our society in compartmentalized terms. We must view ourselves as integrated and then approach our healing from a holistic perspective. We must move from focusing on mutually exclusive interests to mutually reinforcing ones. Our personal financial wellbeing, craftiness, and self-absorption might buy us some time here or there, but collectively and over the long-haul, we as a people can only truly heal ourselves once we begin to help heal those around us.

Postscript: Shannon passed away on November 21, 2009. At the time of her death, she was preparing to become a medical advocate to help those negotiating critical illness and the complex bureaucracy of the American health care system. The family is requesting that any memorial donations in Shannon's honor be made to the Relay for Life, Healdsburg (Shannon's team is called "The Fearless Wonders." or to the Leukemia and Lymphoma Society.)

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