Friday, October 7, 2011

Clinic Narrative | Conversation Nuances, Microaggressions, & Communicating Health Reform

Hi Colleagues,

Here I share a pixel-roll of recent clinic appointments in my effort to beautify clinical contexts. I then write about a recent conversation I had online that helped me to polish my views on health reform.  In this conversation I picked up on nuances and microaggressions.  First, the pretty pixels:





To quote Seinfeld,
The smaller the room, the better! (above)



 


 




My Primary Care said to walk briskly.
So I did.
From one appointment to another.
The above building: UW Physics.
(above series)
You see from these photos that health care is not just inside or outside in extremes, but the interplay of infrastructure, cultural norms for beauty and what is acceptable to show publicly or what we should band-aid, and personal.  When I see my hands I remember worrying and praying.  These pictures remind me to see the beauty in the pain, to be thankful for what life I have, to tell a good joke in the meantime, and most of all, to pay attention.  

What do you see?

A microaggression is a statement, attitude, or behavior communicated in literature, curricula, or the press, interacted between people/groups, and supported by cultural norms.  Microaggressions occur as commonplace, daily, and routine, which constitutes their power.  These repeated, subversive, and subtle insults serve to isolate, oppress, and stereotype people based on factors deemed unpopular, dislikable, or unwanted culturally.  This theory laid the groundwork for Critical Race Theory, but I extend microaggressions to apply to religious choice and, for this post, health status.  

These microaggressions constitute hate speech, but hate implies intent.  Some argue that emphasizing microaggression colludes the issue because it's impossible to "divine" every intent in a remark and may perpetuate a victim mentality.  I don't think people repeat microaggressions always with the intent to hate; a microaggression is systemically supported.  In a sense intent does not matter.  How can it if it's agreed that most -isms are learned?  My concern involves the structures we build, invisible and visible, that perpetuate health microaggressions.  Thankfully and in the very least we can better understand the nuances of how our replies may inflict suffering on someone else.  We can learn to be more conscientious towards others and committed to our own congruence in word and deed.

Recently I discussed the nuances in health communication where I observe the culture of silence and ill-thought out replies as a microaggression.  This discussion took place on a friend's wall via a status prompt.  The article we refer to was written by Sara Douglass, Australian fantasy writer, who suffered ovarian cancer. She wrote about the culture of silence in chronic illness and dying, which I write about specifically, and healthcare communication generally, elsewhere in my thesis and at length on this blog.  Health reform via communication and culture remains a key topic for me.  Her article prompted press coverage on how society makes death and chronic illness taboo.  This taboo, I suggest, serves as a microaggression.

The discussion replies varied from agreement to correction, or the belief that people choose to suffer and must find a positive way to respond without asking others to change themselves. I've edited my reply for clarity so it may differ from the actual discussion thread. I used initials instead of names and exclude others' replies in the interest of privacy concerns as I want to emphasize my points.  Here follows my replies:
While I see the wisdom in your words, there's a flipside to wisdom.  Your reply actually provides an example of what the author is talking about and I'll admit I lost some sleep over your response (not a good thing for health).  Let me explain, albeit a bit at length. She talks about a society that responds to people who suffer illness and death with a culture of silence.  For instance, you recommend to keep things positive and that it's people's "choice" to respond to their situation.  Earlier you link people's health with their ability to respond positively in mind and attitude and recommend a book. Put together, what do those statements say about someone who is not healthy? Is it their fault?

Don't get me wrong. I see the benefit for a person to stay positive and choose their response to pain. I also agree that it's good to state things positively in my writing, even from a marketing standpoint.  I don't argue any of that. I've spent a larger part of the last 10-17 years trying to improve in faith, attitude, education, health, right down to completely overhauling diet, which is another topic in itself.  Yet I want you to see the limitations and implications of those beliefs. Actually, the impact those statements have people. Those statements can actually perpetuate their suffering and sense of isolation. Contrary to cultural belief, health is not just one giant behavioral issue and self-improvement plan.  Sure, attitude, diet, exercise, social life play into health, but those aren't all. I'll explain that in a minute.

The advice to keep things positive infers discomfort with negative and once again calls into question the validity of a health complaints.  You say to not try to change others, but your advice infers that I or people with chronic illness need to change their attitudes and keep it positive for everyone else.  Oh and the bonus is that that positivity will help them feel better or maybe even cure them.  I don't discount any of that, but I don't believe it's always true.  Take my grandma.  Lived a good life, helped others, kept the faith, and suffered for 4 years in a nursing home.  Attitude and lifestyle don't save people from death, and so I suggest not coming at people with that advice for chronic illness.  Instead of asking how people "should" respond to pain, it's kinder and more constructive to ask how can we contribute to their life in word, deed, and heart?

Actually the aversion to complaining extends to clinical contexts and causes negative outcomes.  Clinicians question of the validity of a constituent's presentation and may advise other clinicians to do the same thing in a constituent's chart, which you can imagine results in subpar service.  That happened to me.  UCDavis researchers identify our current communication model as deficient for bringing out effective results in clinical settings.  The current model is the Sacred 7, or a series of questions that clinicians ask to find out what hurts and where.  This model is also known as the symptomatic complaint.  "What is your chief complaint?" they ask.  We've agreed that this culture doesn't really like complaining.  Imagine how this model is ineffective. Other models have since been recommended, such as treating the clinic as a negotiation instead of a compliance-driven place.  The clinician, our expert, whom we must heed and we must change our attitudes and behaviors to get well.  How impersonal. The sympotmaic model for health presentation is all off.  It asks people to complain.  How ineffective.

I refuse to internalize illness with a veil of positivity just to make other people feel comfortable with my situation.  I don't complain about my situation specifically because I agree with your position that it's important to be positive and that thoughts determine habits, which lead to health. Yet I agree with that position so far as it's my responsibility to respond in that way.  The author's point is that she can't even mention it. She has to self-censore.  Pointing this out is not expecting others to change. In her update post she confirms this not her intent; she feels embarrassed at the outpouring of sentiment and support because she didn't intend to complain to be so validated. Asking people to keep it positive and telling them it's their choice how they respond to their pain, while potentially good advice in themselves, only further isolates people who suffer illness and perpetuates suffering.  If you are interested in helping people with their health, then you will be well advised to take care when you give advice to people and that said advice does not perpetuate their pain as suffering as you observed.

Again I recommend shifting the discussion from whether or not complaining is valid to how we can show compassion via active service and friendship with others and especially how we can confirm people.  Confirming people means that we let them speak for themselves about their situation and ask them how we can help them.  The opposite, disconfirming people, means to dismiss, misrepresent, or present them as they don't present themselves to be.  Clinical contexts and social norms lack confirming inquiry and teem with disconfirmation.  It's an easy thing really, just ask "how/what/when/where" questions.  Of course it's easier to not care.  Yet open and present inquiry reflects a sincere concern and allows people to draw closer, which is the meaning of compassion, or to "suffer with."  Not willing to participate in someone else's situation with our presence and conscientiousness, but giving unsolicited advice, only comes across as an effort to maintain a comfortable distance.  Academia terms this dynamic as "fear of contagion," a fear that has historically prompted microaggressions and unjust research norms to people groups in the name of health and science.

I don't question your wisdom or your intent at compassion, but it may help to understand that one way of doing health does not always apply in all circumstances.  Consider that people have many frames of knowing (building from Carey, 1999): reason, spiritual, intuitive, emotional, embodied, relational, systemic, political, social, and organizational.  It may benefit to see the wider landscape of health in society. Even the act of giving advice to a person a chronically ill person without them asking for it puts them at a lower status than the advice giver.  The advice giver is the one with the wisdom and wherewithal and probably health.  The suggestion to keep a positive attitude puts the responsibility on the person with illness, and, again while I agree it's important for each person to take responsibility over her or his situation and have a healthy attitude, the advice actually isolates the person and separates them, effectively relegating their situation with a hint of blame as though their merit or ability alone to will themselves to good health were enough to do so and they failed.  I disagree on both counts.

California newsreel made a documentary called Unnatural Causes that highlights the systemic problems that make people in certain classes and ethnic groups have worse health than those who are in higher class and the majority ethnic group.  These are called health disparities.  Such health disparities can be mapped based on where people live based on their income, and those neighborhoods probably have less public safety and food options in terms of grocery stores, etc.  Michelle Obama knows this and has focused on this as her primary concern with the Let's Move campaign and the farther reaching Child Nutrition Bill.  The disparities are so distinctive that people can actually predict based on the area of the map mortality rates.  They can know the average rate of when someone will die in the area compared to someone else.  So I do not agree that a person's health is solely in their control and that they can will themselves to good health.

On a spiritual and intuitive level, I know that "As a person thinks so she is" (Prov. 23.7). A flip of that imperative is that people's hearts are not always with you even if their words and actions appear to be.  Here is where advice falls short.  "Jesus walked with people" in their situation, got to know them, suggested a family member.  He wanted me to find common ground with someone else.  I had tried to be nice, to ask questions, to draw close, to confirm the person, to be hospitable, to listen, to be kind.  I took all the advice I write here, yet still fall short.  That's ok because you can't always control other people, as you mentioned.  People's history, insecurities, and suffering make it hard to relate sometimes, especially if they act out in aggression.

Take Job's (Bible Job) friends for example. They sat with him for days watching him wallow and rant and his wounds fester.  But they gave him no comfort. God told Job to pray for them and forgive them, and that God would forgive them, too.  This ask suggests that their hearts weren't with him.  They showed no mercy.  They tried to help with their theological statements about the nature of God, man, and sin, but they effectively blamed Job for his situation and so added to his suffering.  They did not know he suffered at the hands of a larger story.  Things aren't always as they seem.  "To care for someone you have to get to know them, and to get to know them, you have to make time for them," our pastor has said.  So I caution reliance on the psychology of health or behavioral change as the main advice we should give people who are chronically ill. So interpersonal interactions also yield health outcomes.

Professionally, clinicians are artifacts of the culture that we in turn create and vice-versa; if they don't make efforts to be different, then they're also going to judge the validity of your complaint when you come in based on what they perceive your neuroses level to be.  Trust me, ask too many questions for ask for too many tests that they think aren't related and after a while they will want to help you and a little judge you and they will ask of your colleagues in your legal record of your chart which they have complete control over and not listen to your complaint.  Then you fork over $300+ for 20 minutes and your problem stays status quo. This goes on for 17 years. Then people tell you to just stay positive and it's your choice how you respond to your pain. Can you see how pretentious that comes across, even if well-meaning?

In my thesis I write about fear of death, and how that fear influences people to respond in certain and often unjust ways when reminded of death.  Sometimes injustice can be subtle, but it is usually pervasive and supported.  Illness definitely reminds of death. If this is true, then how does fear influence our responses to the suffering of others?

It's been established elsewhere that the US is great at disease prevention, but developed countries need to transition to handling chronic illness.  The current research framework is not well equipped to do so because it separates disease, focuses on one "control," and so fails to see the overlap in a person's body.  Health "care" needs a new framework, which UCDavis is working on with their Global Healthshare Initiative.  Add to this Eric Dishman's, Intel health researcher, unheeded advice to US government over the last 2+ decades to take health care off the mainframe and reorganize health as local via dispatch teams, field callers, and especially tele/e health.  Build a giant hospital with hi-tech and highly educated people lacks financial sustainablity and reach. This norm also perpetuates the illusion that health is in extremes: extremely internal, external, divisive, dichotomized, polarized as a dialectic between life/death, reduced to survival, and always driven as a wedge issue that separates from a heart-felt and effective effort to connect with people in a way that results in better health outcomes.

I don't want to come across as heavy-handed here (verbose, maybe :D).  I agree with your points, and I see you as well-meaning and heartfelt, but I also see gaps to fill.  Again, health is situational, individual, communicated, psychological, and social, as we've already covered. Let me emphasize that health is also systemic. That's the gap.

I've learned over the years that these attitudes permeate clinical settings resulting in added pain and frustration at a high expense of monetary and physical cost to me.  I do not expect people to change because I put responsibility on myself to share my situation in a positive way.  To handle it.

Yet that belief, too, limits. It's cultural in that we see it as noble.  When a relative told me to eat lettuce for Christmas if I couldn't find anything to eat, I brought a couple of dishes to share.  I raise awareness in my family and circle of friends.  I teach about food and society, nutritiontea, faith, prayer, friends, and other things I've found helpful.  I photograph and write intermedia blog posts and write manuscripts all in an effort to make sense and beautify to a painful history.  I earned a Master's Degree and want to continue speaking to health and education sectors in an effort to build a public commons with global and local sensibilities via consulting and researching communication, leadership, and digital media, and by producing creative content.  But all of that has it's limits if people simply don't care enough to make changes or sacrifice their own comfort zone for someone else.  My choice to beautify a painful history does not nullify the responsibility of others, especially those who are a social (e.g., family/friends) or inquiry (e.g., clinicians) resource to care. All of these efforts won't save a person totally.  Redeem, yes, help, yes, benefit, perhaps, but all of these efforts fall short of saving the whole person.

I encourage you to check out Unnatural Causes from your local library if it is available.  King County, where I live in Washington state, responded to this film with a social justice initiative.  I'm volunteering for a local candidate running for reelection in my municipality and he is passionate about helping our city to address health disparities to improve health outcomes because he believes that quality of life, education, commerce, and other outcomes come directly from communal health. Here I like the idea of bringing a sense of community back into health. Then health care becomes health share.

Perhaps then we can realize the ideals you mentioned.  Perhaps community health will help us to have better attitudes about ourselves and each other as those for whom the bell tolls.  Mortality and suffering interconnect us, but so also the Creator of Life, so we do well to care. "No [wo]man is an island." I encourage talk that reflects the belief that we are in this together.  We're not separate from each other's suffering or joy, pleasure or pain, death or life.  Actually we can heed or impede any of those events by our actions. Our actions include how we design and organize health delivery right down to our conversations and the advice we give.

I hope that my comments have given a wider perspective about health in our society.  Health is also systemic and policy-driven as it is social and deeply personal.  Therefore, health reform must also be.  If we want to see healthy people and places, then these conversations matter.

Thank you H. for raising this important topic and for sharing your wall.  Be free to learn more about health communication on my blog.  Learn more about my research and access my thesis.  Thank you for listening. Our conversation gave me idea for another blog post... :D

Finally I'm not sure if I noted this before, but Sara, the writer of the article I initially posted, died 9/26/11.

Later I added
I also adhere to a spiritual understanding (Judaic-Christian faith), but I've recently come to appreciate the embodied and place-based nature of our experiences. My community profiles, or travel writings of people and events in place, taught me this. I joke that, from my faith POV, if God cared only for my soul, then why did he go through all the trouble of resurrecting Jesus from the dead. That gets me strange looks usually o_O but I come from a long line of goofy, feisty, & opinionated women. 

I'm happy to report that our conversation ended positively and in a spirit of friendship.  So we warmed our own seat bench for health reform.  The discussion helped me to refine my ideas and I appreciated my friends trudging through my mid-stride writing.  Even Jesus dealt with microaggressions over health when the Pharisees bucked at him healing a woman on the Sabbath.  Jesus replied, in essence, "You show more mercy to an ox.  Shouldn't you show compassion on this woman who suffered 18 long years and is now set free? [italics mine]" (Luke 13:10-17).  We can be more conscientious to communicate a loving and beneficial response by habit, and that my friends requires exercise.  

The short of it:  If we want buy-in for health reform, then we must first challenge the cultural norms that support microaggressive behavior and contribute a more compassionate and beneficial response from clinical settings to everyday conversations.  Otherwise, building from Freire (1970), we risk requiring constituents and contributors to perpetuate an oppressive system.

What say you? What are ways to communicate health and illness? Where do you see communication norms fitting into health reform?

Thank you for reading,
Dena

References

Carey, M.R. (1999). Heraclitean fire:  Journeying on the path of leadership.  Dubuque, IO: Kendall/Hunt.

Freire, P. (1970). Pedagogy of the oppressed. New York: Continuum.