About John Leifer

http://leifer.com

As a strategist, tactician, operational leader and teacher, John Leifer has excelled at helping hundreds of organizations anticipate and adapt to the many changes that have swept through healthcare over the past three decades. His broad consulting experience includes clients ranging from national health systems to pharmaceutical firms to state government and runs the gamut of major constituents comprising the care delivery and financing system. Most recently, Leifer stepped away from his traditional consulting role and served as the senior vice president, strategic planning & marketing, at Saint Luke’s Health System (a 10-hospital, Baldrige Award-winning system in the Midwest). Saint Luke’s had been a consulting client of Leifer’s since 1983. Leifer applied his extensive background in healthcare to the formulation and supervision of strategic plans for the health system’s hospitals and product lines. His oversight included strategic planning, regional development, physician marketing, strategic marketing and branding. After a long career in consulting, the experience provided him with invaluable insight and empathy from the client’s perspective. In 2012, eager to once again work with numerous institutions facing complex challenges, Leifer returned to the firm he had founded three decades ago. Leifer has held faculty positions with both the University of Kansas School of Medicine’s Health Policy and Management Program and the William Allen White School of Journalism. At the Health Policy Program, Leifer served as executive in residence. In 2006, he was awarded the Kansas Health Foundation Excellence in Teaching Award. Leifer brings a blend of analytic and creative thinking to his work, along with a passion for writing and communication. In the mid-1980s, he founded and published The Leifer Report, a healthcare publication that featured contributors ranging from President Bill Clinton to Newt Gingrich. He is a frequent contributor to a range of publications and has been profiled through the years in several prominent magazines, including Money and Fortune. Leifer attended Duke University and the University of Kansas for undergraduate studies, and the University of Pennsylvania for graduate school. He is keenly interested in health policy, population health management, and health outcomes. When not working, Leifer enjoys hiking with his family, along with photography, a passion he developed as a team photographer for the Kansas City Royals baseball team while in high school.

Posts by John Leifer:

Was it Metastatic Cancer? Four Physicians Certainly Thought So!

 

As the author of After You Hear It’s Cancer: A Guide to Surviving the Difficult Journey Ahead, I thought I understood the magnitude of the impact of a cancer diagnosis on patients. After all, I had written about it at length – describing that instant when one hears words so powerful that his or her world comes to a grinding halt, and future dreams dissolve in an overwhelming cloud of anxiety.

But when, earlier this week, I heard: “You have metastatic cancer,” I was completely unprepared to deal with such devastating news. At that moment, I was no longer the author who wrote about the cancer journey – I was a patient thrust into unfamiliar territory and acutely aware of the fragility of life.

Here’s my story.

After resting for several days following a minor medical procedure, I hit the gym on Saturday, intent on regaining my stamina. But after only a few minutes of exertion, I felt incredibly winded. I chalked it up to several nights of poor sleep and the after-effects of anesthesia. By Monday, I was still feeling fatigued, but there was something more…my heart felt like  it was racing.

Though I was scheduled to play tennis that afternoon, my wife convinced me that I would be far better served to stop by her office and let her listen to my heart, check my blood pressure, and measure my oxygen saturation. I reluctantly deferred to her and cancelled my game. I am glad I did.

We discovered that my blood pressure was abnormally high, as was my pulse (nearly 40 beats per minute higher than normal).  Furthermore, Lori thought she detected an abnormality in my heart’s rhythm. So off we went to the emergency department.

Because of my symptoms, I was taken back and immediately and evaluated for a heart attack. Thankfully, that was quickly ruled out…though evidence of some rhythm issue was present. The ED physician ordered a CT scan of my chest to rule out other potential problems.

Four hours after arriving at the emergency department, the results of the CT were back. As the ED physician walked into my curtain-enclosed bay, I said, “Can I go home now?”

“You are not going anywhere,” he responded, before handing a copy of the radiology report to my wife. She looked startled, as she began to read. The physician turned to address me.

“You have a number of masses in your liver. The largest is 6.4 centimeters. You appear to have metastatic cancer. Do you have any questions?”

“What?” I blurted out as a wave of uncontrollable nausea and dread enveloped my body. “I don’t feel well. I think I’m going to pass out.”

I don’t remember what happened next, but Lori said I appeared to have a seizure, then blacked out. She said she couldn’t find a pulse and shouted for the nurses. The cardiac team rushed in and prepared to resuscitate me. Fortunately, that turned out not to be necessary. When I came to, the ED doctor was nowhere in sight, nor did he come by again to check on me.

I spent the night in a hospital room that could have doubled for a broom closet. It looked as though it had not been renovated in forty years. I lay in bed trying to wrap my mind around what I had heard, and what I stood to lose. Life took on a preciousness that I had felt only a handful of times in my life. I was not ready to let go, to give up all that brought meaning to my daily existence, and I prayed to God that I would have a little more time.

I didn’t sleep much that night – between the impending diagnosis and being constantly awakened by nurses’ aides wanting to take my vitals, machines screeching in protest because there was a problem with my IV, and the simple discomfort of being far removed from my secure home.

The next morning, Lori and I impatiently awaited a liver biopsy. A transport aide showed up mid-morning and told us I was being taken to ultrasound. We presumed it was for an echocardiogram of my heart (which had also been ordered), so I told Lori to stay put and I would see her shortly. As the aide wheeled me into interventional radiology, I said: “I thought I was going to get my echo?”

“You’re here for a biopsy,” she said curtly. In a sense I was relieved that it would soon be behind me, but I felt badly that Lori had no idea where I had really been taken.

The interventional radiology team was compassionate and competent. After numbing my skin and providing some light sedation and pain relief, the radiologist used ultrasound imaging to guide a very long needle between my ribs and deep into my liver. He repeated this process four times – taking small tissue samples with each pass.

As I looked up at the monitor and saw the largest mass, I asked: “Is there a chance it’s something other than cancer?”

He responded, “There’s always a chance, but it does look like liver metastases to me.”

When the procedure ended, I was wheeled into a recovery area, where I received incredibly compassionate care from a nurse named Bailey. By then, Lori had been told what was transpiring and she was by my side. We had to stay in recovery for four hours to make sure there was no post-procedure bleeding.

Later that day, I was discharged. Now, there was nothing to do but await the results of the biopsy.

Lori and I tried to remain upbeat in the face of devastating news. When I would get weepy, she would remind me that there was always a chance that things would turn out okay. She told me that, intuitively, my condition did not make sense to her…that patients with advanced metastatic cancer to the liver were generally vastly more ill. I took comfort in those words coming from an experienced radiation oncologist, but I still struggled to have faith in a positive outcome.

There was no news on Wednesday. Late in the afternoon, we ran over to Lori’s office so she could take care of a few loose ends. As we were approaching the medical building, which is ensconced in trees and heavy grass, I thought, “What a powerful omen it would be to see deer.”

As we rounded the curve and approached the driveway, I spotted a deer standing stock still just feet from the curb. It didn’t move as our car approached. Before I could say anything, Lori turned to me and said: “That feels like an omen…a good omen!”

“You’re reading my mind,” I exclaimed…surprised that we were in such synchrony.

By the time we left, more deer had congregated a few yards from our car. The omen seemed all the more real.

What felt like a powerful omen…

Because it was Ash Wednesday, I had suggested we go to church and pray. My wife has a profound sense of faith, and I knew how much it would mean to her to attend. I’m so glad we did.

An orchestra and a choir performed, and the music took on an unusually powerful resonance. I hadn’t felt God’s presence in a long time, but I felt it strongly that night. We prayed for strength and hoped that “thy will” would be to keep me around for a while, though such an outcome was clearly out of my hands.

On Thursday, we hung out at the house until mid-day, anticipating the call that would likely determine my fate. Finally, tired of waiting, we went to run errands – including a planned stop at church to pray more.

We were just pulling up to the post office when my cell phone rang. It was my primary care physician.

“John, it’s Chris. I’m looking at your biopsy report.” He hesitated for only a moment before blurting out: “BENIGN!”

“What?” I exclaimed, as though I couldn’t possibly have heard him correctly.

“Benign. You don’t have cancer. The pathology came back indicating you have a hemangioma.”

“Oh, my God, I feel as though a death sentence has been lifted. Thank you. Thank you.”

I turned to Lori, tears welling up in my eyes: “I can’t believe it…it feels like a miracle.”

“It is a miracle,” she remarked. “I’m so grateful.”

“As am I. Now we need to go to church – to thank God for his mercy.” To which Lori quickly nodded.

There are still tests to be run and results to be confirmed, but the outlook is infinitely brighter.

The experience was a powerful reminder of how important it is to live each day fully, to honor God, and to be profoundly grateful for our loving relationships.

But it was also something more. It made me realize how truly life-altering a diagnosis of cancer is for those patients who do not receive a reprieve. As I said when I began this story, I thought I understood the impact of a cancer diagnosis. The truth is that I didn’t really have a clue – not until it was my life on the line – my future suddenly clouded by the incantation of two words:. “It’s cancer.”

Does a Prayer A Day Keep Illness at Bay?

Research into the impact of religious and spiritual beliefs on our health continues.

By John Leifer

When we are sick, we rely on our physicians to heal us. And for good reason: they possess the knowledge, tools, drugs, and procedures to conquer many maladies. But not all illnesses respond to the ministrations of modern medicine, as many of us learn with the passage of time.

As we age, virtually all of us will be afflicted with one or more chronic diseases, some of which can be quite devastating. Cancer, once considered an acute disease, now often falls within this category. If good fortune prevails, medicine will control the progression of the disease. If not, we hope it will at least provide us with a modicum of comfort.

But medicine is not omnipotent, which is why, for some patients, healing is not the sole province of doctors. Those patients turn to their religious and spiritual beliefs in the hope that solace and, perhaps, healing will be found there. But do such beliefs—and the accompanying prayers, spiritual self-examination, and other practices—truly make a difference in the trajectory of our health?

If longevity and reduced mortality are the ultimate proxy for health, the jury may be out on that question. More than two dozen studies have revealed a correlation between how long we live and the degree to which we regularly attend religious services.1

According to researchers Doug Oman and Carl “One of the most thorough of these studies, an eight year follow-up of more than 20,000 adults representative of the US population, found a life expectancy gap of over seven years between persons never attending services and those attending more than once weekly.”1 The correlation between religious attendance and longevity is so strong that even the National Institutes of Health acknowledge it.2

But it is not just the length of our lives that may be affected by our spirituality or religious beliefs; it is also the quality of our lives. Researchers have found strong correlations between our beliefs and our ability to maintain hope, derive meaning and purpose, and maintain critically important relationships during times of great adversity.

It is important to note that our beliefs can also have an adverse effect on health, as was powerfully demonstrated in a study of HIV patients by Gail Ironson and colleagues. Ironson sought to determine the impact of both positive and negative views of God on the progression of this devastating disease.

Ironson’s results were tied to two clinical indicators of disease progression: CD4 cells (an important component of one’s immune system) and the viral load (the amount of active virus circulating in the patients’ bloodstreams). Ironson’s findings: “Those who viewed God as merciful/benevolent/forgiving had five times better preservation of CD4 cells than those who did not view God positively. Those who viewed God as harsh/judgmental/ punishing lost CD4 cells at more than twice the rate of those who did not view God negatively.”3

Such conclusions are powerful and provocative, yet many scientists remain skeptical about the relationship between religious beliefs/ spirituality and health. It’s not that they refute their colleagues’ findings, assuming that the research is methodologically sound; rather they raise important questions regarding the interpretation of those findings and the attribution of positive benefits to religion and spirituality.

Part of this skepticism comes from a well-founded distrust of the words religion and spirituality because there is no universally agreed upon definition of the terms. For some people these words communicate a profound and personal relationship with God, whereas for others they communicate a more agnostic outlook on life, where one’s sense of spirituality is derived from community. With such disparity it is understandably difficult to draw meaningful conclusions about the influence of religion and spirituality on health.

Beyond semantics looms another important issue: Are there discernible mechanisms at work, underlying religious and spiritual beliefs, that impact health outcomes? Oman and Thoresen offer four such mechanisms1 that may be responsible for improved health and well-being:

  • Health behaviors. Certain religious traditions foster the adoption of positive health habits while discouraging negative behaviors. When smoking, alcohol consumption, promiscuous sex, and other detrimental behaviors are shunned, adherents may benefit from such prohibitions.
  • Social support. There is vast evidence supporting the power of social connection in fostering health and well-being. Faith and religious organizations form the very heart of the social network for many people. Thus religion/spirituality brings social connectedness, which is essential to health.
  • Psychological states. Oman and Thoresen suggest that religious beliefs/spirituality may contribute to a heightened sense of emotional or psychological well-being—whether through elevated levels of positive affect, such as joy and hope, or reduced levels of negative emotional states, such as despair.
  • Psi influences. Psi in parapsychology refers to phenomena that cannot be explained using conventional rules of science. Mystical or transcendental experiences, synchronicity, and other phenomena fall into this category. Because we are unable to explain, measure, or replicate these phenomena, they remain largely outside the realm of scientific investigation.

So what should you take away from this research-oriented discussion?

Empirical research is important, but each of us will approach our health and well-being in a very personal way. Some of us will primarily turn inward, with our focus on how health issues change our sense of self and perhaps our direction in life. For others the journey will be more outwardly focused, emphasizing the importance of personal relationships in helping us cope with whatever health issues arise. Others will ultimately look upward, to God and their relationship with Him.

References

  1. Oman D, Thoresen CE. “Does religion cause health?”: Differing interpretations and diverse meanings. Journal of Health Psychology. 2002;7(4), 365-80.
  2. Hummer RA, Rogers RG, Nam CB, Ellison CG. Religious involvement and U.S. adult mortality. Demography. 1999;36(2):273-85.
  3. Ironson G, Stuetzle R, Ironson D, et al. View of God as benevolent and forgiving or punishing and judgmental predicts HIV disease progression. Journal of Behavioral Medicine. 2011;34(6):414-25. doi: 10.1007/s10865-011- 9314-z.
  4. Swinton J, Bain V, Ingram S, Heys SD. Moving inwards, moving outwards, moving upwards: The role of spirituality during the early stages of breast cancer. European Journal of Cancer Care. 2011;20(5):640-52. doi: 10.1111/j.1365-2354.2011.01260.x.

 

What Every Woman Should Know about Prostate Cancer

What to know when a loved one is diagnosed with prostate cancer.

What to know when a loved one is diagnosed with prostate cancer.

Become an empowered partner by learning about this common cancer type.

By John Leifer

If You Are Like Most American Women, chances are you serve as the key decision-maker when it comes to the health of your family— whether it’s       selecting a physician, deciding on treatment options, or taking steps to prevent the onset of illness. It’s a role that carries with it the awesome responsibility for making effective, informed deci­sions that give your loved ones the best chance of a good outcome and enduring health. This is particularly true when confronting the issue of cancer. And the cancer that is most likely to strike the men in your fam­ily, as they age, is prostate cancer.

What Exactly Is the Prostate?

The prostate is a walnut-size gland located between the bladder and the penis. It surrounds the urethra, the tube that carries urine from the bladder to the penis. When it becomes enlarged, a common condition with age, the urethra is squeezed and urinary prob­lems can result. The prostate plays an important role in reproduction, being responsible for much of the seminal fluid produced by a man.

What Is Prostate Cancer?

When cellular growth goes awry in any organ, cancer is often the result. When this happens in the prostate, it is referred to as prostate cancer. Doc­tors refer to the most common type of prostate cancer as adenocarcinoma of the prostate, based on the partic­ular type of cancer cells that have developed.

How Common Is Prostate Cancer?

With the exception of skin cancer, prostate is the most common cancer occurring in men. According to the National Cancer Institute (NCI), there are close to 3 million men liv­ing with prostate cancer in the United States. An additional 180,000 new cases of prostate cancer will be iden­tified in 2016, and approximately 26,000 deaths will be associated with the disease.1

The good news is that most forms of prostate cancer are relatively indolent, or slow growing. As a result, the five-year survival rate following a diagnosis of prostate cancer is 98.9 percent. The NCI further states that while “an esti­mated 16 percent of men will be diagnosed with prostate cancer in their lifetime…only 3 percent will die of it.”1

Are There Clear Symptoms Associated with Prostate Cancer?

Prostate problems are relatively common in men over the age of 55, and these issues may be mis­taken for cancer in some cases. An enlarged prostate, known as benign prostate hyperplasia (BPH), can be particularly troublesome, causing problems with urination, sexual function, and other symptoms. And while problematic, BPH is far more of a nuisance than a serious threat to a man’s health.

Though prostate cancer can mimic the symptoms of BPH, it can also be present without the appear­ance of symptoms, particularly in its early stages. When prostate cancer becomes advanced, other symptoms may be present, includ­ing bone pain (frequently occurring in the lower back) and unexplained weight loss.

How Is Prostate Cancer Diagnosed?

Preliminary diagnosis generally relies on screening, which consists of a blood test, known as a PSA (prostate specific antigen), accom­panied by a digital rectal exam. Because the prostate is located directly in front of the rectum, a physician is able to palpate the gland with his or her finger to see if there are any obvious abnor­malities. Neither test is definitive, which means that suspected cases of cancer must be biopsied.

When a man’s PSA reaches a cer­tain threshold or there is perceived abnormality upon physical exam­ination, the physician may recom­mend a biopsy. It should be noted that some physicians also recom­mend biopsies based on the rate of change in PSA levels, referred to as PSA velocity. Recent research sug­gests, however, that PSA velocity, by itself, is not a reliable measure on which to recommend biopsies.2

When performing a biopsy, a surgeon—most frequently a urol­ogist—relies on ultrasound-guided imaging to insert needles into various sites on the prostate. The hollow needles extract tissue cores that can then be examined to determine the extent of the disease. Twelve samples are most commonly collected.

The cores are then examined by a pathologist, who rates them based on what is known as the Gleason score,3which ranges from 2 to 10; higher numbers signify a more seri­ous expression of the disease.

If more-advanced disease is sus­pected, additional imaging studies may be performed to determine if the cancer has metastasized, or spread to bones or other organs. Based on the sum of the evidence collected through these various tests, patients are assigned a stage that indicates the extent of the dis­ease. The earliest-stage cancers are described at Stage I; cancer that has spread to other portions of the body are Stage IV.

What Types of Treatment Are Recommended?

The stage of the tumor and one’s age at diagnosis may significantly guide treatment options. Because many forms of prostate cancer are slow growing, very early-stage tumors may warrant careful observation, known as active surveillance, rather than aggressive treatment.

When treatment is required, the urologist may recommend either radiation therapy or the surgical removal of the prostate, known as a radical prostatectomy. Radiation therapy can take several forms, with the most common being an external beam of radiation to tar­get the prostate and kill cancer cells. The most common form of external radiation is image mod­ulated radiation therapy (IMRT). IMRT generally involves five treat­ments per week for eight weeks.

A small number of cancer centers offer another form of external radi­ation known as proton therapy. Proton therapy is controversial4 because its cost greatly exceeds that of IMRT, and numerous experts have argued that there is insuffi­cient data to prove that it is more effective or less toxic.

For patients who do not want to undergo repeated treatments, referred to as fractions, brachyther­apy provides a highly effective option. Brachytherapy involves a single, surgical insertion of radio­active seeds into the cancerous por­tions of the prostate.

Before deciding on a treatment option, it is vitally important that you and your loved one understand the nature of each, as well as its potential short- and long-term side effects. It is advisable to get more than one opinion. Consider scheduling a consultation with both a urologist and a radiation oncologist. You may also find it helpful to do some research into the disease and your treatment options. The National Comprehensive Cancer Network at nccn.org provides excellent treatment guides based on disease and stage.

Are There Significant Side Effects of Treatment?

Prostate cancer treatment, whether involving surgery or radiation, can cause a host of short- and long-term side effects. Transient side effects are generally tolerated well. Long-term problems with incontinence and or erectile dysfunction, however, can have a major impact on a man’s qual­ity of life. Though estimates vary widely, it is reasonable to assume that such long-term or permanent side effects may occur in significant percentage5 of all patients.

When surgery is performed, a nerve associated with sexual func­tion can be severed. A skilled sur­geon may be able to spare the nerve, but there are no assurances. Radi­ation often damages the nerve, though the onset of symptoms may be delayed by as much as one to two years. You should actively question your physicians about their out­comes—specifically the frequency with which their patients experience long-term problems with inconti­nence and/or impotency.

What Is the Most Import­ant Thing You Can Do to Help Your Partner When He Is Diagnosed with Prostate Cancer?

First, encourage your loved one to slow down, despite the anxiety generated by a potential diagnosis of cancer, and gather the informa­tion needed to make truly informed decisions before proceeding with a biopsy or treatment. A great deal has been written about the overdi­agnosis and overtreatment of pros­tate cancer in recent years—with much of the controversy centering on the appropriateness of PSA test­ing among relatively young patients. Before undergoing a biopsy, talk to your doctor(s) about their confi­dence in the PSA scores and whether it may be wise to repeat the test in three to six months before proceed­ing to a biopsy.

This is your first step as you seek to become an expert on the disease, its presentation, and treatment. Once you have availed yourself of the best available information and medical opinions, you are ready to serve as an advocate who ensures that your loved one receives the most appropriate treatment based on the particular stage of disease. Remember, that may mean active surveillance rather than active treat­ment. You want him neither over­treated nor undertreated, both of which are real possibilities with prostate cancer.

Finally, be sure you tune in to the potential impact of the disease and its treatment on your loved one’s quality of life, as well as his self-es­teem. Issues of sexual function affect both of you, and being able to engage in open and effective dia­logue is important to the health of the relationship. You may wish to seek help from a counselor trained to address such issues.

Though prostate cancer is often cured, it may nonetheless take a toll on the family. The more empow­ered you and your loved one are with information, the greater your probability of limiting this toll and ensuring the best possible outcome from treatment.


References
1. SEER Cancer Statistics Fact Sheets: Prostate Cancer. National Cancer Institute website. Avail­able at: http://seer.cancer.gov/statfacts/html/ prost.html. Accessed July 25, 2016.
2. PSA Velocity Does Not Improve Prostate Can­cer Detection. National Cancer Institute website. Available at: http://www.cancer.gov/types/pros­tate/research/psa-velocity-detection. Accessed July 25, 2016.
3. Understanding Your Pathology Report: Pros­tate Cancer. American Cancer Society website. Available at: http://www.cancer.org/treatment/ understandingyourdiagnosis/understandin­gyourpathologyreport/prostatepathology/pros­tate-cancer-pathology. Accessed July 25, 2016.
4. Wisenbaugh ES, Andrews PE, Ferrigni RG et al. Proton beam therapy for localized pros­tate cancer 101: Basics, controversies, and facts. Reviews in Urology. 2014;16(2):67-75. doi: PMC4080851.
5. Pardo Y, Guedea F, Aguiló F et al. Qual­ity-of-life impact of primary treatments for localized prostate cancer in patients with­out hormonal treatment. Journal of Clinical Oncology. 2010;28(31):4687-96. doi: 10.1200/ JCO.2009.25.3245.

 

How to Transform a Doctor’s Appointment into A Shared Opportunity for Learning and Collaboration

Great care requires collaborative dialogue between patients & doctors

Great care requires collaborative dialogue between patients & doctors

Patients’ often express varying levels of dissatisfaction following appointments with their physicians. One of the most frequent complaints centers on a lack of clear, empathic communication whereby the patient and physician exchange information that not only serves to reinforce their interpersonal relationship and trust, but also facilitates collaborative decision-making.

Before this problem can be addressed, physicians must first be aware of the deficit. According to an article in the Ochsner Journal, “Tongue et al reported that 75% of the orthopedic surgeons surveyed believed that they communicated satisfactorily with their patients, but on 21% of patients reported satisfactory communications with their doctors.”[i] Similarly, “A study released by the nonprofit Cancer Support Community found that more than half of patients with cancer feel unprepared to discuss treatment options with their medical team…”[ii] In fact, we know from research that “…Only 36 percent of patients facing important medical decisions indicated that they were extremely well informed about the decision confronting them.”[iii]

Yet, rather than assign culpability to the doctor for this informational deficit, the patient often excuses it by saying such things as I know my doctor is very busy and doesn’t have time to answer all of my questions or I didn’t remember an important question until after I left the examining room. While other patients are simply too intimidated to speak up out of fear of repercussions.

Poor communication clearly comes at a high price to the patient: “…Unsatisfactory communication by healthcare providers (including too little information, too much information, and/or abrupt or blunt sharing of information) is named the second highest reason for suffering by cancer patients.”[iv]  Physicians, too, pay a price when they fail to satisfy their patients: “Satisfied patients are less likely to lodge formal complaints or initiate malpractice complaints [and] are advantageous for doctors in terms of greater job satisfaction, less work-related stress, and reduced burnout.”[v]

A failure to receive informed consent may carry the greatest cost – both in terms of patient angst and the possibility of litigation! Informed consent, by definition, means the patient must understand all of the standard treatment options for their disease, as well as how these options differ in their potential efficacy, side-effects (short-term and long-term), costs, and other factors. Only then is the patient in a position to assess relative risk versus relative reward.

There are steps patients can proactively take to transform encounters with their physicians from ones of frustration into opportunities for learning and collaboration. Before your first or next appointment, consider the following:

  1. Consider having a family caregiver on-board who will attend the appointment and act as your scribe and advocate – ensuring that the information exchanged during that encounter is faithfully recorded, and your needs respected and addressed.
  2. Identify trustworthy sources of information that will help you understand more about your disease so that your time with your doctor is not spent on the basics, but on very pertinent questions about your disease and treatment options. For cancer patients, such sources include: Major NCI Cancer Centers, NCCN.org, and the American Cancer Society to name but a few.
  3. With your caregiver’s assistance, spend an hour developing a list of questions in advance of your appointment. Consider how the answers to these questions might impact your decisions about treatment. Be clear about what you want to know, as well as what you do not want to hear from your physician. Since there may not be time to answer them all, list them in priority order.
  4. Think about how your personal values will come into play when considering treatment options. Write them down, and be in a position to share them with your physician. Personal values vary dramatically, e.g., some cancer patients want to have every possible treatment exhausted before ceasing active treatment, whereas others may put a higher priority on quality of life during the last stages of their cancer.
  5. If your doctor’s office is agreeable, consider providing your questions to your physician’s nurse a few days in advance of the appointment with a note indicating that these are topics you hope to have covered by your doctor.
  6. When your physician provides answers to your question, ask for clarification if necessary – particularly if there is medical jargon that you do not understand.
  7. When agreeing to a treatment, reiterate your understanding of all issues related to the treatment before consenting to it.

Physicians can also take meaningful steps to optimize the learning and collaboration that occurs during patient appointments, by considering:

  1. How you provide information is as important as the informational content.
  2. The warmth and empathy with which you welcome your patients into the therapeutic relationship will be a tremendous determinant of their comfort and satisfaction with each encounter.
  3. Patients may not want certain types of specific information, such as the statistical probability of survival after five years, but virtually every patient wants you to be honest and forthright in answering their questions.
  4. Because you have obvious constraints on your time, there may be tremendous value in having your nurse, nurse educator or social worker available for further consultation with the patient.
  5. A patient’s decision regarding treatment (or refusal of treatment) may be incongruent with your personal values and thus frustrating. What is important, however, is your agreement that the patient made it from an informed perspective after weighing the pros and cons, and considering their personal values.
  6. You will be the beneficiary of excellent communication, and may wish to seek out resources to further hone your skills in this regard.

The operative word for both patient and physician is collaboration. From that collaboration, trusting and valued relationships can be built that enrich the lives of patients and providers.

 

[i] The Ochsner Journal  2010 Sring 10(1):38-43

[ii] Cure Today.  http://www.curetoday.com/advocacy/cancersupportc/elevating-the-patient-voice-study-finds-patients-not-prepared-to-discuss-treatment-options

[iii] – Veroff et al. Health Affairs. February 2013..

 

[iv]  – Bevan & Pecchioni, Patient Education and Counseling, 71

 

[v] Oschner Journal. Pg. 2

Post-Traumatic Growth in Cancer Patients

Breaking the changes that bind us can result in unprecedented growth.

Breaking the changes that bind us can result in unprecedented growth.

The Transforming Power of Stress

There are few life events that can transform our daily reality more swiftly than a diagnosis of cancer. A once neatly planned future can seemingly evaporate in the wake of an overwhelming existential threat. The degree to which we remain mired in this nether-land of despair can be a function of the severity of our cancer, coupled with a myriad of variables – from our psychological health to our spirituality.

Fortunately, for most patients, the profound shock f cancer diminishes significantly over a relatively short period of time. For others, however, the distress associated with cancer may be a frequent or constant companion on the cancer journey, and it may even lead to post-traumatic stress disorder (PTSD).

There is yet another group, though, whose brush with mortality transforms them in a life-affirming direction. For these patients, the threat of cancer results not in PTSD, but in quite the opposite – post-traumatic growth (PTG).

PTG vs PTSD

The term post-traumatic growth was first coined by researchers Richard Calhoun and Lawrence Tedeschi more than two decades ago.[1] Calhoun and Tedeschi stated that two criteria must be met to satisfy their definition of post-traumatic growth: 1) The individual must struggle with a life-changing event; 2) that struggle then leads to profound growth and change.[2] Such growth may take many forms, including enhanced personal relationships, a deepened sense of spirituality, or an awareness of the transcendent meaning of life.[3]

It could be argued that scientists such as Calhoun and Tedeschi have simply formalized and named an idea that predates them by millennia: the indomitable spirit of human beings. It is a force that allows us not only to overcome seemingly insurmountable adversity, but to derive profound meaning from the experience. It has long been a topic of interest to philosophers and poets. Shakespeare eloquently stated: “Sweet are the uses of adversity which, like the toad, ugly and venomous, wears yet a precious jewel in his head.” [4]

The Illuminating Wisdom of Victor Frankl

One of the most profound examples of post-traumatic growth comes not from a cancer patient, but from Viktor Frankl, an Austrian psychiatrist deported to Auschwitz by the Nazis:

The dawn was grey around us; grey was the sky above; grey the snow in the pale light of dawn; grey the rags in which my fellow prisoners were clad, and grey their faces. I was again conversing silently with my wife, or perhaps I was struggling to find the reason for my sufferings, my slow dying. In a last violent protest against the hopelessness of imminent death, I sensed my spirit piercing through the enveloping gloom. I felt it transcend that hopeless, meaningless world, and from somewhere I heard a victorious “Yes” in answer to my question of the existence of an ultimate purpose. At that moment a light was lit in a distant farmhouse, which stood on the horizon as if painted there, in the midst of the miserable grey of a dawning morning in Bavaria. “Et lux in tenebris lucet” – and the light shineth in the darkness.

Frankl had endured unrelenting trauma – including the death of his family – and yet his indomitable spirit was able to rise above it – to be set free. Reflecting on his experiences, Frankl offered this guidance: “The way in which a man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – even under the most difficult circumstances – to add a deeper meaning to his life.”[6]

Cancer has the power to inflict profound suffering, but only the human spirit has the power to transform that suffering into tremendous growth – growth that causes one to rise above an uncertain future, and find profound meaning in one’s relationships, faith, and the simple joys of life.

 

 

[1] Calhoun, L. G., & Tedeschi, R. G. (1995).Trauma and transformation: Growing in the aftermath of suffering. Thousand Oaks, CA: Sage.

 

[2] Sears, S. R., Stanton, A. L., & Danoff-Burg, S. (2003). The yellow brick road and the Emerald City: Benefit finding, positive reappraisal coping, and posttraumatic growth in women with early-stage breast cancer. Health Psychology, 22(5), 487-497.

 

[3] Stanton, A. L., Bower, J. E., & Low, C. A. (2006). Posttraumatic growth after cancer. In L. G. Calhoun & R. G. Tedeschi (Eds.), Handbook of posttraumatic growth: Research and practice (pp. 138-175). Mahwah, NJ: Erlbaum.

 

[4] Read more at: http://www.brainyquote.com/quotes/keywords/adversity_3.html

 

[5] Frankl, V. E. Man’s search for meaning. (1984). Boston, MA: Beacon Press, p. 60.

 

[6] Ibid., p. 88