May 7, 2017

People : Self-Worth

In primary care, most health outcomes rely on patients' ability to care for themselves.  Unlike a surgeon who can concretely make a physical change to a person's body, or an oncologist who administers a chemotherapy regimen to treat a person's cancer, a primary care provider offers words and choices.  It's then up to the person to decide what to do with that information.

It's probably one of the biggest factors in primary care burnout.  Why won't the patients just do what I tell them?  These medicines work.  If only they took them, they would be so much better.  If they could just check their blood sugar and take their insulin, they wouldn't lose their limbs and eyesight.  Yes, it's really hard to stop smoking cigarettes or drinking vodka or shooting heroin, but why don't they use these resources, talk to a counselor, go to a group, take medications to decrease cravings?

Once, I was worried about a patient with worsening kidney failure and referred him to see a kidney specialist.  He missed two appointments, and I asked our referral manager to set him up with a third appointment.  She and I were both frustrated, and she said, "Why doesn't he go to his appointments?  If my doctor told me I had a problem and needed to see someone, I would go."  

Over the years I've developed some theories about this, and they all have to do with certain privileges and the lack thereof.  I often forget that people start from different baselines.  It's easy to recognize that there are differences in concrete income and resources, but it's harder to remember the differences in emotional support and care.  So many of our patients have lived without knowing what it's like to be taken care of; so many have been passively neglected and actively abused.  I think this plays a huge role in how much value they place in themselves, and thereby their self-care.  If no one has invested in you--and if others have devalued you--how do you develop trust in what you are worth?  

I grew up with four older brothers who cared for me on a daily basis, and sometimes I forget how much this care helped me develop a sense of self-worth.  Because I've spent the last decade of my life training to be a care provider and because independence was among the many values my brothers imparted to me, I sometimes forget the roots of this privilege and just how much people have cared for me all my life.

Recently I went back to my hometown of Fremont to run a half-marathon.  To support me, my brother did my laundry so I could sleep early and have clean socks, woke up early on a Saturday morning to drive me to the race, didn't complain when I called him three times trying to figure out where the start line was, and treated me to lunch at a vegan Vietnamese restaurant without even scoffing at this oxymoron.  

It's these things that have always made it a given that I am something of substance, to be nurtured.  And I often have to remind myself that this isn't a given for everyone.

So for the patient who kept missing his appointments to see the kidney specialist, I asked him whether there were any reasons he couldn't make them.  He shrugged.  I asked if there was anyone involved in his care who could remind him or go with him.  He said no, he had no family and he had no friends who knew anything about his health.  So we made him a third appointment and called him multiple times to remind him, and each time I told him I was concerned and hoped he would go.  And he went.  He hasn't become the model patient, but he knows that we're invested in him.  And I've learned to be less frustrated and more accepting.

We will always ask about concrete barriers to care, like getting transportation to appointments.  But if someone can't really tell me why it's difficult for them to care for themselves, we try to consider that maybe they didn't grow up in an environment that convinced them of their value, and make our clinic a space that does recognize and affirm their worth.

Sometimes we get annoyed because our statements of caring don't work.  But just like we tell our patients with chronic pain that we need to focus less on acute fixes and more on long-term solutions because it can take years to improve something that has been happening all their lives--we need to tell ourselves the same.  We might have all the best intentions, say all the empathetic things, and on top of that deal with all the administrative busywork that is our healthcare system--and nothing changes.  

But I really feel that it can, and we just don't see it in quick enough time for our human reward feedback system to reinforce our actions.  Our self-identities are ingrained, etched by years of varying degrees of care and exposure, and we only occupy a sliver of space in our patients' lives.  We can't expect a 15-minute appointment to reverse a lifetime of experience.

But over just a year and a half, I have seen it work.  As long as someone is willing to see me again, I have them come back.  My assistant, who sees the patients before I do, will report to me: "He's here to follow up on his smoking and drinking.  He's still smoking, and he's still drinking."  Then there are days like today, where I had two patients stop smoking since their visit a month ago--both patients who have resisted any changes for the past year.  They might start again before their next visit, but they'll keep coming back.  These moments make my day, and I always tell our patients how happy it makes me, because not everyone has grown up feeling that our happiness is bound together.

I understand the criticism regarding personal responsibility, and of course we have to draw boundaries in terms of how much we can do.  I would argue that personal responsibility has more of an environmental component than we think, and we can influence it.  And that as people with the privilege of being valued in our personal lives and in society, we're the ones with the most  responsibility.  To recognize that we are fortunate for all the things in our lives that converged in a belief in our self-worth, and a motivation to care for it.  To impart this sense of self-worth to people whose lives may be missing these pieces.  It makes me think of Hillbilly Elegy, where he wants to hold poor people accountable for the course their lives run, yet also acknowledges that his path diverged to success in large part due to how his grandparents loved and cared for him. 

I also know that investing too much can lead to burnout.  To that, I would refer back to this and remember that our work relies on showing up, with trust that there is impact but without expectations about the visible outcomes.  I'm not a blind optimist who thinks all people need is someone to care.   But I do believe that my own happiness has identifiable sources, and that we can cultivate these sources in other lives.  And that maybe this attempt is the best kind of happiness, because it's difficult, and shared.

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