Fragility

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Years ago, on Christmas Eve, I received a page summoning me to the Hospital Emergency Center to admit a 50 year old woman with flu like illness. On her own power, she walked into the Emergency Center stating she was in excellent health until the past 3 days when she developed weakness and muscle aches. Within minutes of arriving, she seized and never regained consciousness. Blood work revealed kidney failure, low platelets and a peculiar blood smear consistent with rare thrombotic thrombocytopenic purpura. She rapidly deteriorated, developing progressive shock, and died in the Intensive Care Unit within hours of entry into the Emergency Center. As I broke the news to the family, the wails pierced my heart.

I have been on the other side when the wails emanated from my own family.

We in health care are privileged to view life from the perspective of fragility. We inform patients of bad news regarding their terminal illness, support families dealing with the unexpected loss of a loved one, watch as lives instantly change forever, and engage with the courage of other human beings as they deal with loss and grief.

I stand grateful as I witness the fragility of life. I offer thanks for the sacred privilege of working in health care and lessons provided about life, courage and human dignity. Appreciating the fragility of life, I offer thanks for all that is precious in mine.

Use “comments” below to describe lessons you have learned from working in health care.

Healing

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Shirley,  taught me the meaning of “healing” on a Saturday many years ago. On that particular weekend, I drove to the hospital resentful and feeling sorry for myself for being on call and missing family activities.

As her physician for the past few years, I recalled her history as I perused her chart outside the room. I remember her daughter committed suicide earlier in the year. Sometime after the suicide, Shirley underwent a hip replacement complicated by multiple admissions for dislocation of the prosthesis. She had a history of an artificial aortic valve and recently developed acute endocarditis of the valve seeding the prosthetic hip with an infection. During the current admission, the hip was splayed open enabling drainage and antibiotic irrigation of the hip as she received intravenous antibiotics to calm the heart valve infection. Her only chance for survival involved risky replacements of the infected valve and later the hip. I knew I needed to talk with her about the valve replacement. Given her condition, the surgery carried grave risk, but without surgery, she had little chance of leaving the hospital.

As I walked into the room, I saw she was covered with blisters, most likely a reaction to the antibiotics. She whispered one sentence: “I feel like Job.”

I held her hand and cried with her about the events of the last few months. My self­ pity about being on weekend call evaporated. We talked about replacing the valve and the hip and she stated calmly she wanted to live despite her suffering.

Shirley taught me that healing is not the equivalent of cure. Healing occurs when we acknowledge life as it is and exercise personal choices in the face of reality. Healing may occur with the dying process. Healing may result from grieving.

On that Saturday in Shirley’s’ room two human beings healed.

Post script:

Shirley survived the surgery and, after a multi-­month hospitalization, went to a nursing home. After several months of convalescence, she returned home with a full ­time live­ in aide. In the ensuing years, I saw her frequently in the office. Each visit, her courage healed me.

Health care is a sacred opportunity to learn from others struggling to find meaning and exercise choice in the face of suffering. Our work enables each of us to heal as we support the healing of those we serve.

Use “comments” below to describe instances of “healing” while working in health care

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.

Health Care is Different

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During a family health crisis I noticed we were  hypersensitive to every interaction. We hung on each word and reacted to tone of voice or averted eyes. Would we have reacted this way in a non‐health care setting such as Target or the grocery store? Of course not, as we would not be feeling anxious or vulnerable in a checkout line. Essentially, as patient and family member, we needed compassion and caring with every single human interaction‐ from clinicians to nurses to check‐in to phone calls to nurse’s aides to lab technicians to environmental services team members.

Sitting at a hospital bedside, I reflected on our longing for compassion and caring as I watched team members perform myriad essential tasks (e.g. validating  identity, bar code medication administration, checking drug sensitivities, handling blood products, documenting in the computer) within the urgent multi‐tasking environment of modern health care. As a physician and CEO, I knew these tasks involve life and death decisions and drive safety and great clinical outcomes.

As a family member and CEO, I marveled at how health care is distinct from other service sector operations. In health care, patients/families, CEO’s and each of us as team members expect a two dimensional approach to care. We ask team members to provide compassionate human connection as well as reliable expertise in managing life and death decisions. I wondered whether another industry held the same simultaneous expectations within both dimensions. I could not think of one.

The airline industry involves life and death tasks. But pilots barricade themselves behind locked doors, avoiding requests from passengers. Flight attendants play a role in managing safety during a crisis but averting disaster does not directly hinge on their performance. And we expect courtesy of flight attendants, not compassion. The role of air traffic control and maintenance are also outside the scope of passenger interaction.

Personnel on the flight deck of aircraft carriers manage life and death decisions but expect crisp, task oriented communication from each other‐ not compassion.

The auto industry involves life and death tasks but these take place in the design and manufacturing phase far away from consumers. And we don’t expect compassion from auto engineers and assembly line workers.

Police interact with us in life and death situations, but we expect courtesy, not compassion. (Perhaps crime victims expect compassion but unlike patients/families they can’t take their business elsewhere if they are not satisfied with the level of compassion)

The nuclear energy industry entails the performance of life and death tasks. Yet, consumers sit comfortably in their homes separated from the technicians performing these tasks.

I know of trends to run hospitals like Disney or Ritz-Carlton. But customers don’t feel vulnerable when visiting Disney or sleeping in a Ritz-Carlton bed. We expect courtesy, not deep compassion at Disney and the Ritz. And Disney and the Ritz do not involve life and death decisions in a highly complex, ever changing and uncertain environment.

While health care can learn from all sectors, it is different. We expect  safe, reliable, outstanding professional care in the performance of life and death tasks and compassionate human connections.

Use comments below to describe your views about the difference between health care and other industries or how you approach simultaneously performing life and death tasks while interacting with compassion and caring.

The Healing Power of Belief

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Medicine is a rigorous discipline grounded in hard science. What is the scientific evidence that therapeutic relationships make a difference?

Approximately 20,000 placebo controlled trials/year affirm the power of belief. These studies all compare treatment to placebo. The very need for these placebo-controlled trials demonstrates the power of belief. If the placebo effect was not potent, we would not need the multi-million dollar industry of placebo controlled clinical trials. Instead, we would compare a potential new treatment with no treatment

Unfortunately, we tend to disparage and minimize the placebo effect with comments like “Placebos aren’t real medicine, they just show how gullible and suggestive people are,” and “Real medicine doesn’t use the placebo effect.” But Herbert Benson, MD, a researcher at Harvard Medical School, provides a contrasting view in his book “Timeless Healing‐ The Power and Biology of Belief.” Benson substitutes the neutral term “remembered wellness” for the pejorative word “placebo.” He marshals evidence for the potent potential of remembered wellness. He also provides evidence about its opposite: the “nocebo” effect (you will experience problems if you expect to have to experience problems.)

The catalyst in every incident of remembered wellness is belief. Such belief may be your own composite of life experiences. The belief may come from your clinician and the product of his or her professional and personal history. Finally, the belief can be instilled in you by the confident and trusting tone established within therapeutic relationships.

Interesting examples cited by Benson include:

  • Sham treatments with disconnected ultrasound probes reduced swelling by 35% after wisdom tooth extraction.
  • Women with persistent nausea and vomiting of pregnancy swallowed balloon tipped tubes that allowed researchers to record stomach contractions associated with waves of nausea. The women were given a drug they were told would cure the problem. In fact, they were given the opposite, syrup of ipecac, a substance that causes vomiting. Remarkably, the patients’ nausea and vomiting ceased entirely and their stomach contractions as measured by the balloons returned to normal. Because they believed they received antinausea medicine, the women reversed the proven action of a powerful drug. With beliefs alone, they cured themselves. (Note: this study was performed in 1950, before the advent of Institutional Review Boards that likely would have disallowed it on ethical grounds)
  • Individuals with asthma experienced deterioration in lung function after inhaling what they believed to be a chest constricting chemical (nocebo effect). But if the patients were treated with what they believed to be a powerful new chest expanding bronchodilating drug, they experienced no deterioration. In both instances they received a placebo of inert distilled water. Thus, bronchial constriction was caused by belief and prevented by belief.
  • Boys who reported allergic reactions to lacquer trees were blindfolded. The researchers brushed one arm with leaves from a lacquer tree but told the boys it was a chestnut tree. They brushed leaves from a chestnut tree on the other arm and told the boys that the leaves were from a lacquer tree. The arm the boys believed was brushed with the poisonous lacquer leaves reacted with bumps, redness and itching (nocebo effect) while in most cases the arm brushed with the poison did not

Interestingly, naloxone, an inhibitor of opioid receptors used to reverse heroin and other opioid induced comas, can block some types of “remembered wellness,” indicating that “remembered wellness” is mediated by physiological pathways. This fact fills me with wonder. Why did humans evolve “opiod receptors” that block pain? I don’t think it was in anticipation of the pharmaceutical industry. Humans and other animals developed opiod receptors to support resilient self -healing.

Mind and body inseparable

Back in 400 B.C., Hippocrates, the father of Western medicine taught this: “some patients, though conscious that their condition is perilous, recover their health simply through their contentment with the goodness of the physician.” One thing that has changed since Hippocrates wrote this 2,500 years ago is that all roles and disciplines on the healthcare team—not just physicians—contribute to healing relationships. Otherwise, his statement is as true today as when he first uttered these words.