Clinician Grief

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Craig (name changed to protect confidentiality) taught me how tough physicians should grieve. They shouldn’t. Craig and I were about the same age, each with sons at similar ages. Craig suffered from advanced lymphoma, no longer responding to chemotherapy. He knew from his shortness of breath and growing disfiguring tumors on his face and chest that he was dying. He asked me to promise, when his time came, to keep him comfortable. I promised.

Late afternoon on a “call day” his nurse paged me to his room. Call days were rough. Each intern typically “worked up” 8-10 newly admitted patients over a 36 hour period and responded to the changing needs of over 100 other patients. Upon entering his room, I knew from his gurgling, irregular breathing and faraway look that he was dying. I remembered my promise as he weakly squeezed my hand. He died a few minutes later.

Aware that I already had two new patients to evaluate, as well as a long list of other tasks, I left the room and headed for the stairs. Alone in the stairwell, I paused — surprised by a single muffled sob rising from my chest. I shook it off and headed to the next admission and, from there, to many more patients waiting to be seen that evening.

The implicit message, “real doctors don’t feel sadness”, I incorporated from those ahead of me in training. One just moves on.

I did not think about Craig again until several years after my internship. I heard the book “House of God,” presented a raucous and hilarious view of internship. Instead of laughing, I wept as I read the book which triggered a flood of memories and bottled up grief. I cried for Craig. I cried for the four year old who was crushed by a car when he darted out into the street, and I cried for his parents, to whom I had to deliver the unfathomable news. My tears felt cleansing as I cried for the many patients who died during my training.

A  study in the Archives of Internal Medicine (Nature and Impact of Grief over Patient Loss on Oncologists Personal and Professional Lives) tracked 20 oncologists for nine months to determine if they felt grief when a patient died and how they coped with the feeling. In a New York Times article about the study, the lead researcher, Leeat Granek, writes that “not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves…More than half of our participants reported feelings of failure, self-doubt, sadness and powerlessness as part of their grief experience, and a third talked about feelings of guilt, loss of sleep and crying.”

To avoid being overwhelmed, some physicians and clinicians maintain an emotional distance to cope with a career where they witness so much illness and death. Many clinicians feel they must stay strong for patients and families who are experiencing their own substantial grief. Other clinicians may be reluctant to show emotion in front of patients or their professional colleagues as they perceive this as a sign of weakness.

The study goes on to say “the theme of balancing emotional boundaries captured the tension between growing close enough to care about the patients but remaining distant enough to avoid the pain of the loss when the patient died…patient loss was a unique affective experience that had a smoke like quality. Like smoke, this grief was intangible and invisible. Nonetheless, it was pervasive, sticking to the physicians’ clothes when they went home after work and slipping under the doors between patient rooms.”

Please use comments below to describe how you deal with grief in your professional life.

Privileged Presence

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The story below, She Sang Him His Life, from the book Privileged Presence:­ Personal Stories of Connections in Health Care, captures my sense of reverence for health care.

Palliative care seems to be a place where anything goes. On our unit, the hours are completely open; people come and go as the need; pets visit. Staff pay attention to so many little details of comfort. There’s a tenderness and kindness on the unit that’s extraordinary. By comparison, when I visit someone on another floor, it’s impersonal, and I feel assaulted by noise, unpleasant smells, and a sense of crowdedness.

One night, I arrived for my regular volunteer shift on the palliative care unit and found the staff in a very emotional state. This was not entirely unusual, but I sensed that something special had happened that day. I was right.
A young man, in his early forties, had been on the unit for several days. His wife had been with him almost constantly. This husband and wife were both from the same tiny village in Newfoundland. They had grown up together, become a couple, gotten married, and lived there all their lives. And now this man, her husband, was dying. She knew that the end was near and asked the nurses if she could get into bed with her husband and snuggle. And the answer was, “Of course you can, dear.”

And then the singing started. It went on for well over an hour. This woman, as she cuddled her dying husband, slowly and gently, sang him his life and their lives together.
When the singing stopped, her husband was still alive. She then sang him permission to leave.

Use comments below about stories giving you a sense of reverence working with patients and families.

Words We Use

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Our words direct thoughts and feelings. When interacting with patients our word choices shape our views.

During my formal medical training, I naturally desired to support and understand individuals struggling to adjust to a clinical diagnosis. As an eager medical student, I valued learning how another human being makes meaning from their medical condition. However, the training culture eroded my initial inclinations. I vividly recall instructions during an early clinical hospital rotation. “David, go workup the ‘lunger’ in room 208.” The “lunger”, a 38 year old father of 3 small children , was dying from chronic obstructive pulmonary disease associated with hereditary alpha 1 antitrypsin deficiency. The word “lunger” distanced me from the patient’s anguish and courage in this poignant human struggle.

During the first day of internship, the second year resident instructed me to write a note on the “CHFer” (an individual with congestive heart failure) in room 620. Introducing myself, I noticed the patient was too weak to lift a fork to his mouth to feed himself. Yet, the next day upon entering his room, I noted an open window, empty bed and dangling IV. The patient managed the strength to open the window jumping to his death. Later, I learned this CHFer was in his 40’s diagnosed with a rapidly progressive cardiomyopathy. As a motorcycle racer he jumped over large obstacles with his bike just 6 months prior to hospitalization. The last jump of his life represented the act of a once physically active man exercising his final choice. Categorizing him as the CHFer in room 620 completely obscures the meaning of a bedridden, dependent state for this individual.

I worked up appys, hip fractures, diabetics, acute bellies and numerous other “conditions”. Naming people by their clinical states, we condensed and ignored life experiences insulating ourselves from the patient’s “meaning making.”

Imagine, replacing the standard clinical term “work up” with a request to please “understand” the patient in room 208 who is short of breath with end stage chronic pulmonary disease. The improved training culture would embed the medical evaluation within the context of values and meanings for the patient.

Soon, I internalized the pervasive training culture. Shaped by words, I began elevating clinical problems above “subjective experiences.” Years of clinical practice and personal losses provided the humility for me to appreciate the flaws in this viewpoint. Witnessing the courage of patients and families struggling with loss, fear, confusion and vulnerability, while grappling with my own traumatic health crisis, helped me understand the importance of creating a healing environment and experience with patients.

For many of us, who’ve experienced early clinical training within the traditional medical culture, paying consistent attention to clinical needs arises more naturally than attending to the emotional and experiential concerns of patients.

Please use “comments” below to provide examples of words you use or hear that enhance or diminish the experiences of the individuals we support

Healers and Ritual

 

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Picture the following doctor and patient interactions from my time as a practicing physician.

Patient A: “Every few weeks, I get a momentary stabbing pain right here on my chest. It feels like an electric shock.”

Dr. A: Already knowing the symptom does not represent anything serious, I listen to the heart and lungs, palpate the abdomen and check knee reflexes.

Patient B: “Sometimes my stools are little and hard. You know, just like a rabbit’s. I have noticed this for 20 years and it has not changed.”

Dr. A:  Already knowing that the symptom does not represent anything serious, I listen to the heart and lungs, palpate the abdomen and check knee reflexes

Patient C: “Ever since my wife died 3 months ago I have trouble sleeping. I am worried that I have a serious medical problem.”

Dr. A: Already knowing that the insomnia stems from grief, I listen to the heart and lungs, palpate the abdomen and check knee reflexes.

After years of being drawn to listen to the heart and lungs, palpate the abdomen and check knee reflexes I felt engaged in an ancient dance. In most cases, these assessments contributed little to my knowledge about a patient’s physical condition. Going through the routine, I felt a subterranean kinship with witch doctors and shamans.

At one point in my career, I felt compelled to learn about ancient healers. I discovered they all had something in common: ritual. Rituals mark the transformations occurring with significant transitions such as birth, death, birthdays, confirmations, bar mitzvah, etc. Listening to the heart and lungs and palpating the abdomen represented an important ritual in applying human touch to transform worry into acceptance.

In a remarkable 18 minute TED talk video entitled “A Doctors Touch,” author and infectious disease specialist Abraham Verghese describes the power of the human hand to touch, comfort and diagnose. (Click here to view). Verghese paints a vivid picture of the everyday health care ritual of patients baring their souls to physicians and then disrobing.

Please use comments below to describe your thoughts about the relationship of healing, ritual and touch

 

Healing Lineage

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The healing lineage of physicians traces back thousands of years spanning cultures. We explain the present; we predict the future; we change the future. We forge relationships in order “to cure sometimes, to relieve often, to comfort always.”

When I was a young physician, Dr. Moses Barron, posthumously taught me about healing. I never met Dr. Barron, but received his teachings via a tattered, folded note carried for 40 years in Max’s wallet. As part of an initial history and physical examination, I asked Max the usual question: “have you had any medical problems over the years?” Max said nothing as he reached for his billfold retrieving a handwritten note dated (before my birth) and signed by Moses Barron: “You have nervous bowel. It will flare up whenever you are under stress.” Sure enough, Max suffered symptoms of irritable bowel syndrome, yet never sought treatment, subsequent to Dr. Barron’s inscription. Dr Barron explained the present (you have irritable bowel), predicted the future (you will have symptoms whenever you are under stress) and changed the future (Max did not seek medical help for his symptoms).

Dr. Barron taught me “little things” contribute to healing in ways that we may never observe.

Years later, I learned Frederick Banting, during his 1925 Nobel Prize acceptance speech for discovering insulin, attributed his findings to an article written in 1920 by Dr. Baron.

Please use comments below to describe how “little things” contribute to healing through relationships, explaining the present, predicting the future and changing the future.

Shame, Blame and Cultural Humility

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In recent posts (Cultural Humility and Language and Cultural Humility) I shared that cultural humility begins with recognizing our own silent assumptions that act as blinders. These blinders can inhibit the way in which we glimpse the world through the eyes of others. At times they can cause us to blame patients, shaming individuals in the process.

The blinders of health care which can lead to blame and shame derive from a fundamental cultural assumptions of Western culture– I am in charge and thus have personal responsibility for all aspects of my life. How do these assumptions show up in health care and how do they at times cause blame and shame?

Consider how you think about the relationship of lifestyle to prevention and wellness. Our language related to illness, as I wrote about in “Language and Cultural Humility” tends to make use of military metaphors – health care battles disease. In contrast, when we think about prevention we tend to use a personal responsibility framework embodied in the term “lifestyle choices.”

We assume based on ample evidence that eating the right food in the right amount and exercising regularly prevents problems such as obesity, high blood pressure and heart disease. Don’t get me wrong – focusing on how changes in lifestyle can prevent health problems is useful, but too often we move beyond the evidence and invoke the personal responsibility blinders embedded in the term “lifestyle choices” to judge those who are overweight, smoke or lead sedentary lives. We reason that if regular exercise and a good diet help prevent health problems, and if everyone is personally in control and responsible for their behavior, than obesity or other “evidence” of not following an “ideal lifestyle” must flow from weak-willed lack of disciplined choices. This structure of thinking is equivalent to viewing obesity as a character flaw which then leads to blame and shame.

“Lifestyle choices” represents our Western cultural blinders of control and personal responsibility. We silently say to ourselves that “it is all about the choices we make.” The term also reflects biases flowing from a culture of affluence. We silently assume that everyone can afford fruits and vegetables rather than macaroni and cheese or that regular exercise need not need compete with more basic needs to make it day to day.

I do not intend to diminish “agency,” the sense that our decisions matter. I am suggesting that “agency,” though important, can act as a cultural blinder leading to judgment, shame and blame.

Avoiding the judgmental shame/blame trap implicit in “lifestyle choices” requires us to recognize our deep- seated cultural biases and to replace judgment with curiosity. As an example, the personal responsibility framework is one of many ways to view prevention issues. Like other frameworks it is not right or wrong, rather simply more useful (when it helps prevent health problems) or less useful (when it leads to judgmental blame). Another alternative viewpoint to personal responsibility is that obesity is a species problem which develops from humans being separated from the cycles of famine that marked most of our history. In this viewpoint, humans developed metabolic defenses to cope with famine and now that we have have moved beyond the environment for which we evolved to handle, obesity occurs.

Do you at times judge yourself or others for what you consider ‘lifestyle choices”? Reading this blog, do you find yourself irritated and wanting to assert: “but prevention is about choices and personal responsibility”? (If so, you may have a cultural blinder). Please use comments below to describe your deep-seated cultural biases.

Language and Cultural Humility

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In my last post, Cultural Humility, based on the book The Spirit Catches You and You Fall Down, I shared that cultural humility involves replacing judgment with curiosity, and begins with reflecting on our own silent assumptions. Another book, Illness as Metaphor, by Susan Sontag, made me realize the depth of my biases and the difficulty of rising above them. Sontag shows how the words we use imply assumptions; language powerfully yet invisibly shapes how we view the world.

Sontag describes how Tuberculosis (TB) was viewed prior to our understanding of its origin and treatment. TB, also known as Consumption, was seen as a disease of a passion. Individuals with TB were “consumed” with unrequited passion. Consumption was viewed as a feature of the romantic artistic temperament, and the gaunt appearance of the “consumptive” became the model for aristocratic looks.

Despite the advent of modern science, we continue to view illnesses through blinders. Consider, for instance, that we use military metaphors to guide our thinking about cancer. Cancer cells invade the body. Individuals fight cancer. Radiation therapy bombards cancer cells and chemotherapy targets malignant cells, though it creates collateral damage of harming healthy cells, leading to hair loss, vomiting, etc. Obituaries describe how a loved one finally died after a long battle with cancer. Indeed, the war on cancer began with Nixon signing the National Cancer Act of 1971 to conquer cancer. We may extend the military metaphor of cancer to all disease: Modern medicine fights illness.

Alternatively, we may view cancer through another blinder: the revenge of an injured environment on thoughtless humans who smoke, eat toxins (saccharin, nitrites, hormone fed poultry, etc.), pollute with pesticides, or overdose on radiation and microwave energy. These military and environmental metaphors can be useful, but they may also be damaging unless accompanied by the humility to understand that they are simply cultural assumptions embedded in language.

Consider the example of my mother. She was at peace after chemotherapy failed and wanted to be comfortable and with her family. A well intentioned busybody harangued her to continue the fight by eating apricot pits and by visualizing her good cells fighting the cancer cells. Implicit in the busybody’s world view was that cancer victims had control–if only they tried hard enough. Although modern medicine uses treatments which are more effective than fruit pits and imagery, the trap is the same. The military view of illness may engender subtle blame, shame and a sense of failure. Progressive illness must imply that we did not fight hard enough or that we developed the cancer in the first place because we were weak willed and smoked or ate the wrong things.

As I read Sontag’s book, I reflected that perhaps our most pervasive blinder relates to the language we use to describe life. The following words demonstrate examples of different views of life embedded in language:

Life is a struggle
Life is a gift
Life is a door to the next life
Life is a journey
Life is a stage
Life is a mystery
Lifee is box of chocolates (and you never know what you’re going to get)

In order to glimpse the world through the eyes of others, we must first see and remove our own blinders which may be deeply embedded in the words we use.

Please use comments below to describe how the words you use reflect silent assumptions and biases which may interfere with your interactions with those who have different assumptions.

Cultural Humility

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Reading The Spirit Catches You and You Fall Down by Anne Fadiman, I was struck with the realization that my deep-seated biases about health care could limit my open-mindedness unless I was aware of them.

Fadiman chronicles the story of young Lia Lee, her parents, and their struggle with language and cultural barriers. The Lees were among the 150,000 Hmong immigrants who fled Laos when the country fell to communist forces in 1975. Lia, their fourteenth child, was born in California in 1982. As with so many immigrants at that time, the Lees had little exposure to the Western world and believed deeply in a world of spirits and shamans. Lia was only 3 months old when she sustained her first seizure and was later diagnosed with epilepsy.

Fadiman describes the family’s reaction as follows:

When Lia was about three months old, her older sister  slammed the front door of the Lees’ apartment. A few moments later, Lia’s eyes rolled up, her arms jerked over her head and she fainted. The Lees had little doubt that what had happened. Despite the careful installation of Lia’s soul during the” hu plig” ceremony, the noise of the door had been so profoundly frightening that her soul had fled her body and become lost. They recognized the resulting symptoms as “quag dab peg”, which means, “the spirit catches you and you fall down”.

In traditional Hmong belief, qaug dab peg, like many illnesses, is viewed as spiritual in origin and is caused by the soul separating from the body. A traditional cure might entail visits from a shaman who would attempt to reunite body and soul. According to Fadiman, the Hmong regard epilepsy with ambivalence. On the one hand, it is seen as serious and potentially dangerous. On the other hand, it is considered a special honor and individuals with epilepsy often become a “txiv neeb”- a shaman healer.

Lia’s seizures progressed and by the time she was 4 years old she had been hospitalized 17 times and endured more than 100 clinic visits. Cultural misunderstandings between the care teams and the family created tragic consequences. The Lees did not always give Lia her medication because they often misunderstood the ever- changing directions and they did not want to completely interfere with quag dab peg. To encourage her soul’s return, her parents gave her herbs and amulets and she was sometimes visited by a Hmong shaman, who chanted, beat a gong and performed animal sacrifice.

Neal Ernst, her physician, saw his job as practicing good medicine and assumed the job of Lia’s parents was to comply with his advice. In his view, lack of compliance constituted child endangerment and Lia was forcefully separated from her parents and placed in foster care for a year. The separation triggered the mother to consider suicide and at one point Child Protective Services considered placing the entire family in a psychiatric hospital.

Lia was 4 1/2 years when she developed an overwhelming infection and sustained seizure. Her organs failed and she slipped into a permanent coma. She was sent home to die but through meticulous and loving attentiveness of her family she lived another 30 years in a persistent vegetative state.

Several years after Lia became comatose, her mother shared the following with Fadiman:

Your soul is like your shadow. Sometimes it just wanders off like a butterfly and that is when you are sad and that’s when you get sick, and if comes back to you, that is when you are happy and you are well again. Sometimes the soul goes away but the doctors don’t believe it. The doctors can fix some sicknesses that involved the body and blood, but for us Hmong, some people get sick because of their soul, so they need spiritual things. With Lia it was good to do a little medicine and a little “neeb”, but not too much medicine because the medicine cuts the neeb’s effect. If we did a little of each she didn’t get sick as much, but the doctors wouldn’t let us give just a little medicine because they didn’t understand about the soul.

As a young physician, I learned to view medicine through the “mind body dualism” articulated by the philosopher Rene Descartes – mind and body are separate. I also embrace the scientific model. In contrast, the Hmong see spirit, mind and body as one. Paradoxically, the scientific model using modern PET scanning images is consistent with the Hmong perspective that mind, body and spirit are inseparable. Despite this recent evidence, my western mind remains mired in the illusory divide between mind and body.

I invisibly roll my eyes when I hear people talk about the latest diet supplement, feng sui, or spiritual healers. As I read the words of Lia’s mother, I understand that the eye rolling reflects an attitude of judgment arising from blinders. Though I will always value skepticism based on the scientific model, I can replace judgment with curiosity. This represents the beginning of cultural humility.

The starting point of cultural humility is not for me to examine the patient’s belief system but rather for me to reflect on my own silent assumptions. Perhaps the outcome for Lia would have been different if her providers maintained a foundation of cultural humility.

In order to glimpse the world through the eyes of others we must first see and remove our own blinders. Please use comments below to describe how your biases and assumptions may interfere with interacting with individuals who do not share your way of seeing the world.

With Great Power Comes Great Responsiblity

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Ben Parker, uncle of Peter Parker (Spiderman), taught a young Spidey, “With great power comes great responsibility.”

George, taught me that lesson the first day of internship as my resident accompanied me through the Intensive Care Unit (ICU). Several months earlier, George, a perfectly healthy and vital young man, planned to donate a kidney to his brother, but now he lived on a ventilator in a deep coma. As part of the evaluation for kidney donation he underwent an Intravenous Pyelogram (IVP kidney XR). Unfortunately, George sustained a cardiac arrest from an allergic reaction to the IVP dye leaving him with severe and permanent brain damage from lack of oxygen.

Day after day I visited him as his family stood vigil at his bedside. Noticing movement when they touched him, his family clung to hope for his recovery. I knew movement demonstrated decerebrate posturing indicating severe brain damage with a grim prognosis.

Despite trying to distance myself from the tragedy, his status seared a lesson into my being. Before meeting George, I knew of the great potential of modern medicine to provide benefit (e.g. kidney transplant). On my first day of internship, George taught me the power of healthcare to harm as well as help. With the great power to harm comes the great responsibility to use the scientific method (evidence-based medicine) to assure that our interventions carry a greater likelihood of benefit than harm.

Of course, health care, like life, includes a “mystery bag”- forces like love, spirit, will and belief that cannot be readily studied with randomized, controlled trials. With great power comes great responsibility to use the scientific method with great humility that mysteries abound.

Please use comments below to describe your thoughts about using the scientific method while embracing the mysteries of life.

 

 

Coordinated Care and the 17th Most Powerful Person in the World

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Steve Jobs, the co‐founder of Apple and former director of Pixar, died on October 5th 2011 from a rare form of pancreatic cancer. His medical care exemplifies the promise and problems of modern healthcare.

Jobs transformed multiple industries including personal computing with the Apple II, animated movies with Pixar, the music industry with the IPod, mobile phones with the iPhone and publishing and tablet computers with the iPad. In 2010, Forbes estimated his net worth at $6 billion and ranked him as the seventeenth most powerful person in the world, several positions ahead of Nicolas Sarkozy, President of France.

Jobs benefited from receiving cutting edge health care technology including a liver transplant. He was one of the first people in the world to have all of the genes of his cancer tumor as well as of his normal DNA sequenced. It was a process that cost more than $100,000.

On the other hand, his billions could not buy care coordination. Walter Isaacson, Steve Jobs’ official biographer, describes how the wife of the seventeenth most powerful person in the world needed to assume responsibility for coordinating his care:

…Jobs allowed his wife to convene a meeting of his doctors. He realized he was facing the type of problem that he never permitted at Apple. His treatment was fragmented rather than integrated. Each of his myriad maladies were being treated by different specialists­ oncologists, pain specialists, nutritionists, hepatologists and hematologists­ but they were not being coordinated in a cohesive approach… “One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team,” Powell [Job’s wife] said. This was particularly true at Stanford, where nobody seemed in charge of figuring out how nutrition was related to pain care and to oncology. So Powell asked the various Stanford specialists to come to their house for a meeting… They agreed on a new program regimen for dealing with the pain and coordinating the other treatments.

Jobs, with all of his wealth, could not purchase coordinated care, a nonexistent service at Stanford. Our volume–based payment system pays for doing volumes of “stuff” to patients but fails to reimburse for coordinating “the stuff.” Instead, Jobs’ wife assumed the role of coordinator by inviting all of his physicians to their home to create a treatment care plan. One can imagine an invitation from the seventeenth most powerful person in the world is not to be ignored. Patients and families with less power (i.e. the rest of us) struggle in requesting to convene clinicians.

Coordinating care represents an intersection of clinical quality with the patient/family experience. Coordination enhances the experience of care and supports clinical quality by preventing duplication, errors of omission (I thought specialist x was handling that) and errors of commission (adverse interactions between different treatments).

Please use comments below to describe how you have experienced coordination of care. If you work in health care, use comments below to describe how your organization coordinates care.