Tag Archives: Patient Doctor relationship

Surviving Cancer/Sustaining Self 3: Being Proactive

My treatment for acute myeloid leukemia required four separate hospital stays.  They began with a 37-day stint for initial treatment and concluded with a 25-day stay for my actual transplant, with two, one-week stints in between to keep my disease under control until my transplant.

From my first days in the hospital, it was evident that there was very little I could control in my new circumstances. Rather than indulging in despair or frustration, I resolved to focus on my immediate environment and be as pro-active as possible in that small world.

Toward that end, I took charge of my room by making my bed every morning and fastidiously keeping everything neat and tidy throughout the day. I began the exercise routines and mindfulness practices described in previous posts.  I wrote regular reports to keep people informed about my status. It wasn’t much, but it still provided some sense of agency and control within my new “home.”

I also brought a pro-active attitude to my medical care. I looked forward to my daily consultations with the doctors whenever they happened to drop in.  I always had questions ready about my treatment, medications, and progress. Their willingness to entertain my questions and concerns felt very supportive, and our consultations came to feel like a synergistic collaboration.

For example, there were at least two occasions when I experienced unwelcome side effects from my medications. As they speculated on the causes, I would add my own observations about the dosing, timing and effects of various drugs.  Through these collaborative discussions, we successfully resolved some problems that had perplexed each of us individually.

My most frequent and prolonged interactions, however, were with my nurses. From the start, I sought to create some rapport as they tended to my needs.  This began as a conscious strategy on my part, but quickly evolved into a genuine appreciation for all they did and a grateful acknowledgement of their challenges throughout the day.

When time permitted, we would chat about relatives, crack some jokes, commiserate about politics, or share life stories. Each of these conversations reframed their clinical care-giving into a more human and personal interaction. The small efforts I made to establish rapport were repaid many times over in the care I received.

In all these ways, I sought to be an active subject in my care rather than a passive object receiving medical ministrations. Now for the standard disclaimer. I have no idea if my proactive stance had any direct bearing on my successful outcome, but it gave me a significant role in my medical drama that was rewarding in itself.

Surviving Cancer/Sustaining Self 1: Mindfulness

Surviving Cancer/Sustaining Self 2: Physical Activity

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing. To learn more visit Steve’s website.

When is a Little Knowledge a Good Thing?

In the summer of 2016 in seemingly good health, I was diagnosed with acute myeloid leukemia through a routine blood test and subsequent bone marrow biopsy.  In 48 hours, I went from a carefree existence to a week-long, 24/7 chemotherapy drip and a 5 ½ week hospital stay.

Although my doctors described my treatment plan, in retrospect it’s remarkable how little I learned about my disease.  This cancer is not “staged,” because it is so unpredictable, and there were no discussions of long-term prognosis, survival rates, or other such matters.  For my part, I made a conscious decision not to surf the internet collecting all sorts of dubious, unverifiable information about my disease.

Instead, I simply trusted my doctors as we moved through my initial treatment one step at a time: induction chemotherapy, temporary remission, infection management, count recovery, and emerging molecular and cytogenic data on my cancer.  Throughout this period, my doctors’ calm, professional demeanor provided reassurance that my disease was a problem they could solve.

It wasn’t until I was contemplating a stem cell transplant that I heard the first hard numbers and survival rates for consolidation chemotherapy versus a transplant. Even the best-case scenarios looked pretty grim, and it dawned on me that I was fortunate to have survived up to that point.

I proceeded to transplant, recovery and survival.  As I got better, I gradually learned even more about the lethality of my disease. I now believe that it was for the best that I did not initially know all the dire things I eventually came to learn about AML. As it was, I could maintain a more hopeful outlook over my many months of treatment.

I don’t claim that this path is appropriate for every patient or disease.  But I was struck to learn of some research on AML patients that is consistent with my story. In the webcast “Coping with the Emotional Side Effects of AML” (available at patientpower.info), Dr. Thomas LeBlanc reports on interview data from AML patients. Among the more striking findings is that the more accurately patients understood the likely outcomes of their disease, the more emotional distress and sadness they experienced.

I would never advocate that ignorance is bliss. But my experience — backed up by this exploratory research — suggests that just a little knowledge can be a good thing when it comes to surviving AML.

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

 

On Patients and Emotional Labor

Given my recent posts on the emotional labor of doctors and nurses, it only seems fair to turn the lens on myself and ponder how I experienced and expressed a variety of emotions throughout my treatment for acute myeloid leukemia.

In the early stages of my care, I sought to be a “good patient” and cultivate positive relationships with my doctors and nurses.  I was seeking to transform routine, clinical encounters into more human and humane interactions. But it was also a strategic move on my part to insure I would receive the best possible care.  While patients’ demeanor should not affect their quality of care, nurses and doctors are also people with their own emotional states.  Getting on their good side seemed like a wise course.

In the later stages of my treatment, it became evident that I was on the road to recovery.  As it gradually dawned on me that my doctors had saved my life with their medical knowledge, treatment plan, and attentive care, I experienced a flood of powerful emotions: unbounded good will, heartfelt gratitude, and a deep appreciation for them and how they practiced their craft.

While I expressed this appreciation, I also felt a certain reticence about whether or how to convey the depth of these feelings.  After all, a famous sociologist once argued that professional role relationships like doctor—patient should be “affectively neutral” and that strong emotional sentiments should be reserved for family, lovers and friends.

I’m guessing that this famous sociologist was never successfully treated for a life-threatening disease. But my experience left me seeking some further outlet for the profound gratitude and deep affection that I felt toward my doctors upon my recovery and survival.  The best I could do was pay it forward through my volunteer work and peer counseling with blood cancer patients. In some small way, those activities help me feel like the benefits I received from my doctors and nurses live on in what I try to bring to current patients as they navigate their own medical destinies.

And just in case my doctors stumble across this entry, please know I cannot thank you enough.

Read the other posts in this series:-

On Doctors and Emotional Labor

On Nurses and Emotional Labor

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

On Doctors and Emotional Labor

A recent post on this site about stress among health care providers reminded me of some recent work in my discipline on the sociology of emotions. Research in this area has shown how occupations often include “feeling norms” about how practitioners should manage and display appropriate emotional states as part of their job.

During my prolonged treatment for acute myeloid leukemia, I witnessed one such “feeling norm” on the part of several of my doctors.

In the early stages of my treatment, I received induction chemotherapy and was exploring my options for further treatment, including a stem cell transplant. During this time, I met with several oncologists. They were professional, clinical and informative in our interactions, but they also maintained emotional distance or neutrality.

This changed in the later stages of my treatment, after I had my transplant and it appeared I was on the road to recovery with no serious complications. Those same doctors became much more emotionally expressive, and our interactions had a warm, nurturing quality that had been notably absent before then.

My intuition is that this shift reflected an unspoken feeling norm about how doctors manage and display emotional states. Bluntly put, they were reluctant to make an emotional investment when their patient was still facing uncertain outcomes. Once my odds of survival had qualitatively improved, they allowed themselves to activate and convey a much stronger emotional bond with me.

It’s worth noting that these oncologists were also all women, so gender norms were certainly part of the dynamic. Nonetheless, this pattern of initial emotional neutrality giving way to subsequent emotional connection seems like a highly adaptive and relatively healthy way for doctors to deal with the unpredictable and sometimes tragic outcomes of cancer treatment.

This pattern was not as pronounced with my nurses, who displayed more emotional availability from the outset; that’s a subject for my next post.

 

steve bSteve Buechler is a recently retired sociology professor and cancer survivor.  In 2016, he was diagnosed with acute myeloid leukemia and successfully treated with chemotherapy, radiation, and a stem cell transplant. He has since become a big advocate of writing stories as a survival strategy in the face of life-threatening illness.  His own story is available in “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” his memoir from Written Dream Publishing.

 

 

 

About The Med Bag

 

A relationship like no other

The relationship I have with my medical provider is unique as it is based almost entirely on trust. I tell him/her the most intimate details of my life–that I don’t reveal even to my closest family members or significant other. He/she is not just my health care provider but also my confidant in some ways. But lately I’ve noticed a growing distance. I can no longer call and directly talk to my doctor. I have to leave a message. Nor can I always see him/her when I have a concern. I have to make do with a substitute. Then when I’m really sick and need to go to the hospital I see another bunch of strangers. I’m told my doctor is too busy to come to see me.

Yes, it’s true. The practice of medicine is changing. We providers are no longer able to provide exclusive care to their patients. Often, we have to delegate to others as we are placed under constant pressure to squeeze one more patient into that fifteen-minute window and waste time entering irrelevant information into the EMR (electronic medical record) and filling forms and paperwork. We begin to appear aloof, inattentive, sometimes even uninterested and dismissive when clearly we are not. Our patients feel they are another file in the cabinet rather than a thinking, feeling human being.

I started my career in primary care then changed my mind and moved to hospital-based medicine. I made the transition, so I can spend as much time as I need to with every one of my patients without restrictions. Of course, this comes with increased stress levels because I’m taking care of really sick individuals, but compromises have to be made. The hospital environment is different. People come, get better and leave. Though some keep coming back. Often because they are sick but sometimes due to other less well-understood reasons.

Over the years I’ve had some extraordinary encounters and met extraordinary people endowed with tremendous grit, endurance and courage. Some of them are etched in my mind; they’ve moved me, humbled me, exposed me to my vulnerability and changed me permanently; hopefully for the better.

The purpose of this website is to bring forth the human aspect of medicine that seems to be have got lost in this fast-paced world. We want to share insights and experiences from both sides of the aisle. Many of these are deeply personal and the authors are being very courageous by opening a part of their lives to the world. Now and then, my colleagues and I will also elaborate on some topics on health and medicine.

Sincerely,

Dr. Simi K. Rao (creator of The Med Bag) and The Med Bag Family.