Laura's Story

Recently, Laura Stout, a Health Assistant I work with at Accolade shared a story with me that has been passed down in her family.   I share it here exactly as she shared it with me, with her permission of course. 

“I have an interesting story about my Great Grandmother… 

She was working on the Family farm and had a serious farming accident during harvest.  A corn stalk punctured her lower leg and continued through her leg until it reached her knee.  She was 26 years old and had two kids under the age of five years old and a dairy farm to sustain.This wound was enormous and became infected which considering what they use as fertilizer, is no surprise. 

The shocking part of the story is that due to the “blood poisoning” caused by the infection in her injury, the small town doctor gave my great grandmother two options for treatment, “You can have your entire leg amputated, or you can die”.   

Well, this seems like an obvious course of treatment in the pre-antibiotic era, but what was not considered is that for a Mennonite woman in rural PA working a dairy farm and raising a young family, the loss of her entire leg was a worse option than death itself.  So, she said… give me death…. 

Well, my Great Grandfather was not as on board with this as an option, so he took my Great Grandmother from her “death bed,” to an Indian Medicine man who made a wash using unknown ingredients (in the story it was some type of ash water) and instructed her to rinse her leg day and night changing its wrap continuously.  

Long story short… My Grandmother was her fourth child.  My Grandmother talks about reaching up her Mother’s leg and feeling the scar and hearing the story as a warning during the harvest every year.”

This is a wonderful parable that illustrates a number of universal truths that we in health care see every day. 

• ·      Every family has their own stories, their own “mythology” that helps define the family’s values, beliefs and strengths.  Those stories help pass on from generation to generation core aspects of that family’s approach to health, illness, adversity and life itself.  Whenever you work in a helping field, the ability to have a person share their family story is extremely valuable in enhancing the professional’s ability to help that person and their family.
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•       Based on a person’s values, death may not be the most negative outcome.  In this story, the thought of being an added burden for the family that needed her was worse than death for Laura’s great-grandmother.  When health professionals help others, they have to understand that there are certain things that may be more important than health such as caring for a family and being true to one’s beliefs and values. 

• ·      Everyone can be totally open, and be totally correct and yet be incomplete in their “truth”.  Thus the country doctor was absolutely correct from his training and perspective that the only choices were amputation or death.  The medicine man’s knowledge of what were certainly antibacterial substances was unknown to the doctor and therefore the doctor’s knowledge was incomplete.  Even in today’s advanced medical world, an expert in a narrow area of medicine can easily miss options that are available outside of his or her area of expertise. 
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•       Lastly the power of a narrative, a story used to communicate, should be strongly valued.  We are truly fortunate to have narratives before us daily and we should always strive to capture them, learn from them and use them to teach others.  

Disease, Illness and Suffering

Health policy tends to focus on population issues such as costs, access, and outcomes and in recent times has developed strong interest in evidence based medicine, changing behavior within communities, insurance exchanges, and encouraging consumerism.  These are all important concerns however I fear we all lose when we focus too much on the policy and not enough on what that policy means to the individual in need.  We may be missing critical components of the nature of disease, illness and suffering as we push to redefine patients as consumers of health care services in order to lower costs and broaden access.  While those policy efforts bring benefits, they also have the potential to harm individual patients and their families.  For me as a physician and for most health professionals, patients are more than consumers and illness and suffering are more than the biology of disease.  For clarity, we need to define disease, illness and suffering.  

• Disease: Any impairment of normal physiological function affecting all or part of an organism, especially a specific pathological change caused by infection, stress, etc., producing characteristic symptoms. 
• Illness: The experience of a person who has a disease including the psychological, the social, the financial and the spiritual.  Different people experience diseases differently and that difference makes illness unique for each person. 
• Suffering: The feeling of pain, loss, fear, loneliness, stress and even spiritual angst that can be associated with disease and illness however may also be present in the absence of any biological stress. 

These distinctions are important for individuals and for policy.  People want to be understood as unique and autonomous when they are in a time of need.  Evidence based medicine which is solely focused on the physiology of the disease may not fit the experience of the illness they have and they feel.  An evidence based disease protocol that calls for medications that are too expensive for a particular patient or for advanced diagnostics that are not available in a certain community and requires travel and time away from work and family do not fit the patient’s illness which is their reality of the disease.

 

Recently at Accolade, we assisted a woman who has a disease called pseudotumor cerebri.  She lives in an area in which the best physicians and facilities to treat her disease are about four hours away by car at a renowned academic medical center. We had originally helped arrange for her initial care at that academic center.   The reality of her illness, as opposed to her disease, includes the fact that she cannot drive four hours and her husband cannot take time off to drive her as he is at risk of losing his job if he takes more time off of work.  So she will not go back to that academic center even though she had her initial successful treatment there.  We are now helping her get the best possible care for her disease and her illness closer to home by marshaling local resources for her.   The risk of receiving care that is potentially not as good as the care at that academic medical center is worth it to her to maintain her way of life and to avoid further work stress for her husband.  We are helping her with her illness not only her disease. 

In health care and in health policy, we tend to focus on suffering in situations in which someone has a terminal disease that is beyond our abilities to cure however suffering is seen in any number of illnesses and even in the absence of an illness.  A person who has lost a job and cannot care for their family is suffering without an illness.  We recently had the occasion to help a woman whose husband died after he saved her from a riptide when they were swimming in the ocean.  That woman was not sick but was profoundly suffering.  On her third call with an Accolade Health Assistant, this woman spent time crying with her Health Assistant and grieving at her great loss.  She needed someone she trusted to just listen and be that shoulder to cry on.  She needed someone to be with her through her suffering.  

I think about these cases because we cannot “fix” healthcare, making it affordable and accessible until we acknowledge and address illness and suffering and not only disease.  That means realizing what is important to families and not only the important biological facts.  Daniel Sulmasy, a Franciscan monk and a physician who is on the faculty of the University of Chicago Medical School and the University  of Chicago Divinity School has written eloquently for years about the need for patients' illnesses and suffering to be recognized and “treated” as effectively and diligently as their disease. 

In his books, Sulmasy points out that the role of a health professional is not merely to cure and treat disease, but to address illness, and perhaps most of all to relieve suffering.  He points out, “the need for medical care is not like the need for automobile repairs or a haircut”.  He quotes Robert Sokolowski, the eminent Catholic theologian and professor of Philosophy as saying, “The medical need is special not because my body is at issue but because I am at issue.” 

Sulamsy writes, “They (People) want a form of medicine that can heal them in body and soul.”  “They seek a form of medicine that treats them as persons – a form of medicine that acknowledges what science cannot see or hear or accomplish.”  He goes on to say in describing the limitations of purely science based medicine, “Patients came to feel like scientific specimens rather than human beings.  Iatrogenic (illnesses caused by medical practice) grew steadily more prominent with every scientific success.  Some side effects have been even more social than biophysical…..The solutions to these problems…have been diagnostic of its affliction – more nursing homes, more neonatal intensive care units….Empathy and mutual acceptance of the frailty of our common humanity have come to be considered anachronistic.” 

Sulmasy knows that the pain of being alone when you are sick is not eased by having an MRI.  The suffering of something as simple and “minor” as an upper respiratory viral infection is not eased by antibiotics that won’t cure a virus but will make it feel as though someone cares enough to take action.  We need more caring and less unnecessary testing and medications.  We need more caring and fewer interventions that do not contribute to improvement in life.  We need more treatment of the illness and easing of the suffering while we treat the disease. 

The irony is that modern health policy, by focusing only on disease increases costs as people try to find solace and understanding through the lab and the pharmacy.  It is only by caring for people through their illnesses and their suffering that we can achieve true savings as people stop trying to find answers and solutions where none exist.  To paraphrase Professor Robert Sokolowski, we must always keep sight of the person, the “I” and not only the body.