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    A View from the Pew
    Wednesday
    Jul062011

    Whose Body is It Anyway?

    I hold physicians in honor. Essential to our wellbeing, their vocational profession demands excessively long work days, weekends on call, irate and oft times inconsiderate patients whose demands surpass mortal expectation. Physicians must navigate their way through a labyrinth of healthcare rules, regulations and systematic flaws while remaining compassionate, knowledgeable and technologically current. Based on our medical needs, our relationships with our physicians vary based on their skill level and personality.

    Although I deeply regard my own physicians I gained over a period time a respectful but firm ability to inquire about the diagnosis and treatment of my own body. Perhaps a question regarding a particular medication arises. I ask. (“Could you please clarify what you just told me in lay terms?” ) Maybe medical language becomes muddled in my one-one meeting with one of my physicians because of the emotional factor whirling inside me. I let them know. (“I’m feeling a little nervous (tense, afraid) of what you just told me. Can you give me a minute  before we continue this discussion?” )And if I instinctively feel that one of them recommends a treatment that may not seem right for me, I speak up. (“I will NOT go through bariatric surgery! I’ve had enough change in my life. I will lose this weight the customary way: good old fashioned diet and exercise!” ) It’s my body. I have a ‘say’ in my own treatment and in who I elect as the physicians who will treat me. When I advocate for someone else’s health care, I speak for those who place their trust in me to care for them. Duty dictates that treat their as I would speak up on my own behalf. I offer three examples out of my experience as a patient, a caregiver and as a parent.

    The Patient Perspective

    After my third Cesarean section, the pain during menstruation and the pain when I urinated felt simultaneous. The internal pressure prevailed almost every minute of each day and the intensity of soreness increased as months went by. I spoke to my obstetrician, an excellent physician, and told him about my discomfort. He examined me several times and repeatedly told me that he could find nothing wrong over a period of three years. The severity of throbbing continued to the point where I wept on a daily basis, bit on a washcloth in the bathroom to avoid frightening my three little children and tried everything from heat, ice and the full body weight of my husband sitting on my stomach to relieve the ache. I instinctively felt as though my uterus and my bladder somehow one organ; when one acted, the other reacted.

    Even as the demons of self doubt began to extend their tentacles of misgiving that this pain was all in my head, my lower body informed me that something was very wrong, no matter what diagnosis my physician tendered. When one physician keeps telling you that there’s nothing wrong and you’re still in pain, it’s time to move on and find another. After yet another futile visit to my OB/GYN, my husband, a pharmacist and health care administrator in a hospital system,  indicated that although my physician might be a really great obstetrician, he may not be as strong as a gynecologist and I might want to consider another physician. That eye opening wisdom opened a new door that led to an excellent decision. I found a new gynecologist with a solid reputation who, after hearing my story and examining me, suggested a DNC and a laparoscopic look inside. I agreed and the procedure confirmed what my body had informed me. The images showed that the scar tissue from the C-sections had actually adhered the bladder to the uterus.  My bodily instincts were spot on: both organs looked like Mr. and Mrs. Potato Head connected together with Superglue. My new physician disconnected them and I felt pain-free for about six months, until the tentacles of new scar tissue extended their nasty spider arms to once again connect both organs into a new one, which I named my Uteblad. My physician offered two options: a continued process of procedures that would disconnect my Uteblad or a full hysterectomy. At the age of 42 with three children, the prospects of no more periods and bidding fare thee well to my Uteblad sounded like heaven on earth. I chose the second option. When a friend who had undergone  a hysterectomy advised me not to ‘mourn long’, I heeded her advice, grieved the absence of my uterus and ovaries for about 10 seconds after surgery and then asked my husband to pop a cork on a bottle of champagne. My new gynecologist understood that I had choices and respectfully left the ultimate decision up to me because my body is mine. My bodily instincts led me to resolve my medical condition in a collaborative effort with my physician.

    The Parent Perspective

    As a parent, our children’s bodies belong to us, no matter the age of the child or parent. When their bodies hurt and they suffer, we hurt and suffer as well, often more than they do. From the time that we conceive our children, good parents nurture and care consistently for them, placing their own lives at the disposal of their children. My husband captured the equation at the birth of our first child: “A child is born + we are changed = Forever.” Such is the love of parents for the their children. Nothing is too great, nothing is too small. Their wellbeing will always be our primary concern and source of joy or sorrow.

    A fairly quiet person, our son Tim never whined throughout his childhood illnesses or injuries. My husband and I always marveled at Tim’s recuperative powers. When Tim turned twelve, he began to complain that one of his knees caused him considerable pain when he ran, climbed stairs or knelt for church services. Thinking that Tim might be in the early stages of adolescent rebellion (never happened), I made light of his pain until he told me that it ‘really, really hurts, Mom. I’m not making it up. My knee really hurts.” This wasn’t rebellion; Tim’s body propelled him to speak up and make his mother pay attention that his physical person needed care.

    I made an appointment for him with our pediatrician, a really great physician who loved kids and treated them from birth throughout college, something not typically found in pediatric care. His practice also contained a pristine host of nurse practitioner who also treated all of our children. I made an appointment with Ramona, a very competent and personable nurse practitioner on the pediatric staff who had a cancellation on the last appointment of the day that I called. I picked Tim up after school and we off to the appointment on that Friday afternoon to check out what I thought was an unseen bruise, wart, spur or something easily ‘fixed’.

    When Ramona examined Tim, I noticed that she became uncharacteristically quiet as her testing and questioning of Tim continued. At the end of her examination of Tim’s knee, Ramona excused herself and went to speak to the pediatrician, who came into the room and examined Tim’s knee. They stepped out of the room together, telling Tim and I that they would return in a moment. By this time, I knew that something was amiss but tried not to show my growing panic to my young son, who was happily swinging his legs and chatting away as he sat on the examining table, oblivious to the mounting fear in my heart.

    Both the pediatrician and Ramona returned to the examination room to tell me that they would send Tim and I from the office to Radiology in our local hospital. Concerned that the lump might be a tumor, both the doctor and nurse practitioner agreed that further testing should be immediate. Because it was a Friday afternoon and Radiology closed on weekends, we would not know the results of the tests until Monday, an anguish-filled amount of time before knowing the outcome of the tests. Other patients awaited the physician and he left the room with a sympathetic nod. Ramona, a mother of two children herself, saw the visible fright in my entire person and with a compassionate look in her eyes, took my hand. “ I will not leave this office until I hear from Radiology,” she told me. “I will stay by the phone and wait for the news and call you the minute that I hear from them. Please try not to worry.”

    I felt that it would be a miracle if my legs would carry me to the car. My eyes blurred from the empathy that this wonderful caregiver showed me and from the terror that filled me from my heels of my feet to the roots of my scalp. My precious son may have cancer. I was planning the lily shroud that we would lay over him as we drove from the doctor’s office to the hospital. However, Ramona’s promise to put her own children on hold and stay late in the pediatric office to assist me remained with me throughout that drive to the hospital. To this day, I’m sure that her response gave me the courage that I needed to move my feet and bring Tim for the next step of testing. I’m not quite sure that I remember what I told my husband in a quick cell phone call, but it equated to something like “Houston, we have  problem. Get over here now.”

    True to her word, Ramona called our home at 8:00 PM. “Tim’s tests indicate that he does not have a tumor,” she told my husband and me, who listened on two phones. Ramona told us that Tim had developed Osgood-Schlatter Disease, a common cause of knee pain in adolescents. The disease would continue throughout Tim’s adolescence. His knee would particularly ache throughout growth spurts. Treatment included ice, elevation, rest from activity, an elastic wrap and Ibuprofen, particularly throughout the most painful periods where the disease exhibited itself.  Ramona also told us that Osgood-Shlatter Disease could but rarely lead to surgery as a last resort to relieve pain.

    Bless Osgood and Schlatter, whoever they were. Tim would be just fine. I wept openly in gratitude, not only for the heartening news, but for the thoroughness of Ramona, who listened earnestly and acted diligently on Tim’s behalf. The collaborative and compassionate response of Ramona’s sensitive  response to the physical pain of not only her patient but of his mother is the stuff that great health care is made of. Tim’s body is my body, too. And Ramona gets it. We hold her and the pediatrician in honor.  

    The Caregiver Perspective

    My husband and I became the principle caregivers for both of my parents after my mother’s initial stroke. As the years progressed, my mother’s short term memory weakened; she called it ‘the dwindles’. Diagnosed with Alzheimer’s Disease,  my mother struggled not only with dementia but an increasing depression that became difficult to witness. With two deceased brothers and my youngest brother living on the other side of the country, I remained the sole child to assist them. I learned to think for her. My dad’s advancing age and my mother’s increasing memory loss  motivated them to sell their home and build an in-law apartment attached to our home, at the invitation and encouragement of both my husband and me. Their bodies, so to speak, were now in my ‘keeping’.

    Eight years older than my mother, my dad watched my mother lose her ability to render decisions and think for herself. My mother lived long enough to know that my dad now had advancing prostate cancer. They accompanied each other to their respective doctor’s appointments, which became increasingly difficult because of my dad’s profound deafness and my mother’s lack of short term memory. Always finding humor in the most solemn of situations, my parents’ comic routine became a family favorite: “What did he say?” “I don’t know, I can’t remember.” I began to accompany them to their doctor’s appointments, to hear, to remember and to advocate for both of them. As my mother’s dementia progressed, my dad never left her side until the day that she died, at home and in our care with the help of Hospice. My mother knew us all to the end of her days on earth, a gift that not everyone experiences with Alzheimer’s Disease.

    Dad underwent a triple by-pass surgery over twenty years ago. At 90 years of age he was no longer a candidate for any kind of cardiac surgery. Soon after my mother died, Dad informed us one evening at dinner that his physician, a cardiologist since Dad’s initial surgery, planned to schedule him for a stress test at his next appointment and he was feeling anxious about it. Dumbfounded, I asked my father if he wanted to go through a stress test. “No, no,” my father protested. “I keep telling the doctor and the nurse practitioner that I don’t want to go through that. The test is four hours long and I get too nervous before the test. I can’t sleep because I worry about it for weeks ahead of time. And after the test is over, I’m just wiped out for days. I’ve told them that for the last few years but they keep scheduling the test anyway. ”

    Furious with the obvious disregard of my father’s wishes by the physician and nurse practitioner,  I squared my shoulders and told my father that that I would go to his appointment with him the following week. “You don’t have to undergo that test if you don’t want to, Dad,” I told him. “We’ll take care of it next week. Don’t worry about it anymore.” “Really?” my father raised his eyebrows and looked at me. “I can refuse the test?” I couldn’t believe my ears. My dad had no idea that he had a voice in the care of his own body and treatment. “Of course you can decline the test, ” I replied. I looked for back up from my husband, a pharmacist and hospital administrator, who sat quietly listening to the conversation. He spoke gently but firmly to my father. “Dad, the only reason someone should undergo a stress test is if they’re a candidate for heart surgery. You’re beyond that point now. If you don’t want to have a stress test, don’t do it.”  Visibly relieved, my father looked like a little boy who had been told that he didn’t have to go to school on the day of a big exam.

    The next week, Dad and I visited his physician. “I don’t usually see the doctor,” my dad told me as we drove into the parking lot. “I usually see his assistant, the nurse practitioner.” I wondered why the physician rarely saw my father but I didn’t comment. “No problem, Dad,” I said. “We’ll just tell her that you’ve made your decision not to have the stress test.”

    The nurse practitioner entered the examination room and was clearly surprised to see me with my father. As I introduced myself, I thought “She’s annoyed that I’m here”  but I shrugged it off and prepared for the good fight. “I will be at my father’s future appointments. Because of his profound deafness, he finds it difficult to hear what you tell him and he’s afraid to miss something vital.”

    The practitioner nodded and looked at my father’s chart. “I see that you’re scheduled for a stress test next week, Mr. Morency,” she said. “My father has decided not to have the stress test,” I told her. I turned to speak to my dad, so that she could hear him decline the test in his own words. “Dad, do you want to have a stress test?” “No, no!” he declared. “I don’t want a stress test. They’re too long and they make me too nervous.”

    The practitioner began to argue with my father. “Well Mr. Morency, the doctor wants you to have the test to see how you’re doing. Are you sure that you don’t want to follow through?” My dad didn’t quite hear what she said so he turned to me for assistance. “She wants to know if you’re sure you don’t want the test,” I said slowly, looking directly at him. “Yes, I’m positive,” he laughed. “I don’t want that test!” “Alright then,” I said, turning my attention back to the practitioner. “You heard it directly from him. He does not want a stress test. Is that clear to you?”

    The nurse practitioner nodded and wrote something in her chart. She completed a quick exam of my father’s vital signs, never bothered to check his feet (one of the first things that you check in elderly patients) and told my father that he should come back next week for a blood pressure check up and some blood work to check on his B-12 level. She left the room without any formal farewell. I helped my father with his coat, stopped at the front desk for his appointment card and we left the office. On the ride home, I casually asked, “How often does someone check your feet and recommend that you see a podiatrist?” “No one ever checks my feet, “ my dad answered, looking a bit surprised that I asked the question. Not commenting, I then asked my father if he wanted me to return with him the following week. ‘No,” he told me. “I’ve been doing that for a long time. I know what to do. It’s easy. No need for you to come with me. “ Something inside me stirred. “I really should go with him,” I thought. However, I have learned that you cannot strip someone’s independence all at once; the gradual release of responsibilities takes time and patience on the part of both the caregiver and the patient. So I dropped the subject. Thinking that I settled the matter of the stress test, I felt somewhat confident that Dad could return to the doctor’s office unaccompanied, but the uneasiness persisted. “Let it go,” I told myself. “It’s his decision to return alone.”

    The next week as we dined, my father told us that he had gone for his appointment. He looked uncomfortable. “What’s the matter, Dad?” “The nurse practitioner came in to take my blood pressure today and told me that my stress test is scheduled for next week.”

    If angels were sitting at the table with us that night, they fled the scene when they saw my wrath. “She WHAT?!” I shouted. “You told her that you didn’t want the test! Why did they schedule you? Did she say why?” My father sheepishly replied, “The doctor said that I needed it.”

    In a word, I was wild. Ancillary practices make a mockery of health care in this country. They prey upon the most vulnerable of our citizens, the elderly, who often times depend on the advice of their health care professionals for sound and just decisions on behalf of their patients.  Because my father was raised in an era where physicians were considered second only to God, he, like many elderly patients, do not question or challenge a course of treatment. In my father’s case, I believe that the only reason that his physician insisted on a stress test for a 91 year old patient was money that fed the physician’s practice.

    I understand that doctors suffer fiscal concerns in this post-modern era of uncertain healthcare practices that seem dictated more by insurance  companies than good medical practice. I also appreciate the dilemma of physicians who face families that question why a test did not take place if a sentinel event occurs with their loved ones. (“Doctor, you didn’t give her that test and she became sick and died.”) Physicians’ heads lie on the chopping block everyday; I get that and it’s a conversation that I reflect upon in the chapter Because They Fear Death. However, in my father’s case, I truly felt that he had not been heard when he clearly said that he did not want a stress test. I cannot fix a broken health care system. I can, however, use my voice to speak for one patient at a time if my instincts inform me that something seems amiss.

    I swallowed my mounting wrath so that I would not upset my father but inwardly, I prepared for battle. Once again, I turned to my husband for advice. “Okay. Someone has to begin somewhere. This kind of abusive practice is one of the reasons why this country finds itself in this conundrum healthcare. What can I do about this?”  “Report the physician and the nurse practitioner to the Board of Registration in Medicine.” my husband responded immediately. “Will they listen to me, or will I end up in a circular file somewhere?” I asked, already doubting that anyone would listen to this story. “Oh, they’ll listen,” my husband replied. “They take this kind of thing very seriously and will take immediate action in one way or another. Write the letter and explain what happened. I don’t think that it will take long for you to hear from them.”

    I include in this chapter my letter on my father’s behalf to the Board of Medicine as a sample for anyone who may wish to pursue a similar process of advocacy on behalf of someone for whom they provide care.

     

    To: Consumer Protection Manager

          Massachusetts Board of Registration in Medicine

     

    I am the caregiver, health care proxy and legally appointed power of attorney for my elderly father, Marcel Morency, a profoundly deaf, 90 year old man with prostate cancer, a history of heart disease and an aneurysm located in the year base of his brain. My father lives with me and my family, and I oversee his healthcare needs.    

    In the spring, my father worried about his annual cardiac stress test that was scheduled to take place in a few weeks. Surprised that he was still undergoing testing at his advanced age,  I asked my father if he wanted to continue with stress testing. He replied that he did not wish to have any more stress tests for the past several years, and explained this to his physician, Dr. ------ of --------, as well as the nurse practitioner, ------several years ago. My father said that both the doctor and the nurse insisted that he continue with stress testing, so he agreed and continued to test these past few years. He said he felt worried before each of the tests, and exhausted after the procedure for several days. I asked my father if he wanted to continue stress testing and he emphatically said ‘no’. Because he is a poor candidate for repeat open heart surgery,  our family felt that my father’s decision regarding his own health care should be honored. My father was very happy and at peace with his decision and asked me to advocate for him on his next scheduled visit with his physician. 

    In  June, 2010, I accompanied my father to his regular visit to Dr.------. We saw the nurse practitioner. I specifically told the nurse practitioner that Dad would no longer continue with stress testing and canceled the one that was scheduled. Nurse ------clearly understood that my father no longer wanted to pursue stress testing. I thought the matter was closed.

    Today, my father kept an appointment for a simple blood pressure check with the nurse practitioner. I did not accompany him to his appointment, assuming that there was no need for me to do so. Tonight, my father told me that he had been scheduled by Dr. Desnoyers’ office for a four hour stress test procedure next week, which requires him to fast the night before. When I asked him what happened, my father said that he felt ‘pressured’ by the nurse practitioner to comply with the physician’s wishes that my father undergo the stress test. My father felt ‘obliged to do the test’, even though he clearly did not wish to do so.

    I cannot express the level of anger and disappointment that I feel at the lack of regard for my father’s wishes by his health care providers. His patient right to choose has been violated and he was coerced in a subsequent visit to his physician without the presence of a family advocate.  Because of his severe hearing disability, he is vulnerable and found himself at the mercy of the people in whom he places his complete trust. We no longer feel as though Dr. ------ or -------- deserve that trust.

    Tomorrow, I will once again cancel my father’s stress test and begin to look for another physician.

    I am writing to the Board to investigate the apparent dismissal by the physician and his nurse practitioner to honor the previously expressed and quite specific wishes of the patient. During today’s office visit, they seized an opportunity to apparently coerce my father into agreeing to a test at a time of vulnerability where he has severe hearing impairment, advanced age, and no family advocate present at the time of the appointment. While my father is of sound mind for his age, he is easily confused and weak to stand up for his own wishes when confronted by medical personnel. I feel that this medical practice has failed to uphold patient rights by attempting to inflict their own opinions regarding the care of this 90-year old patient. I question why an office would disregard a patient’s wishes, especially given the advanced age and health status of my father. I speak not only my father; if this is happening to him, I am fairly certain that the same thing must be happening to other patients in similar circumstances.

    In this time of cultural concern over the mismanagement of health care and its high costs, it seems to me that physicians who insist on expensive testing despite their patients’ wishes not to do so contribute to the current condition in our society. I am only one small voice but one voice is better than no voice to speak for those who may never do so on their own behalf.

    Thank you very much for your attention in this matter.

    DMG

    Two weeks later, I received a response from the Board, indicating that they received my letter and informed the physician and nurse practitioner of its content. The physician involved was asked to respond in writing to the Board, which would then follow up with a formal hearing and rule on their finding. Two months later, the Board voted in favor of my appeal and placed the grievance into the files of the physician. I felt that justice had been served not only on behalf of my father but for all people who place confidence in their health care providers to do the right thing and find themselves in a battle of ancillary practices rather than good medical practices. Perhaps this one physician would think twice before recommending unnecessary tests for other elderly patients. My father’s body is in my care; his body is my body.

    Within that month, I found a new internist for my dad. His new physician listens to him with compassionate attention and treats him with honest integrity and dignity. Dad’s eyes were opened to medical malpractice and the difference between physicians and practices. He cannot get over the difference in office procedures, the care and attention of his new physician, who practices medicine with appropriate and candid treatment for his 91 year old patient. He treats my father’s body as he would treat his own. We hold my dad’s new physician in honor.

    So whose body is it, anyway? I believe that a strong collaboration built upon relationships between patient and physician create the best possible answer to this question. Good physicians treat their patients with the regard that they would tender to their own family members. I ask my physicians this question when they offer me options for a course of treatment: “If I were your mother, wife or daughter, what would you tell me to do?” Their honesty always provides me with the most straightforward guidance that they can provide.

    I honor my physicians and the marvelous work they do. Their skill, knowledge and profound commitment to my health hold me accountable not only to my own wellbeing but also point the way to the due diligence that must be required of us on behalf of our own bodies, the physicians we elect to care for us and for those for whom we advocate. Whose does your body belong to?