Heroes and superheroes

Its been a while.

Thumbing through "The Psychology of Superheroes" took me back to a thread that has run through the interactions I have had with patients over the 40+ years I have been in clinical practice. The authors, proponents of Positive Psychology, note the absence of heroes in contemporary life and suggest current journalism exposing our sports, political and other glitterati as having clay feet. The authors review the character strengths, socialization and happiness factors reflected in the representation of superhero life.

So what has this to do with my day? I meet heroes every day. They live among us. No

costumes or outwardly obvious superpowers of flight or fight. They have the internal powers that make them strong and resilient. They have rewarding family and social interactions - they are fact, not fiction. They have no secret identity.

They are people which disease has made patients. An acute event such as leukemia or cancer has ambushed them and their families and brought out the character strengths they may not have realized was in them. Strengths that are required for survival.

Strengths that accompany patients on their final journey with grace, dignity and a lesson for the rest of us. I remember and salute you.

Inflammatory stuff......

Reviewing subject material for a talk to laypersons I am giving next month has added to my conviction that we can do more to help ourselves and rely less on the health care industry.

As you will see from my companion website I have a management "map" that incorporates the patient [ and family ] as strategic and executive partners in their own care.

The lifestyle component is the center of my talk and the subject for this post. Biologic evidence links inflammatory mediators, as one of many pathways, to cancer promotion and progression one cancerogenesis has been initiated. Inflammation is mediated by chemical messengers and cross-talk substances such as cytokines.

Some of this chemistry is pro-inflammatory; others anti-inflammatory. The question being what can we do to tip the balance to the healthy, "anti-cancer" direction? Our habits and environment can influence disease outcomes and quality of treatment.

1 Moderate exercise you enjoy.

2 Move to a "Mediterranean" diet.

3 Manage attitude and relationships - understand and use bio-behavioral skills.

4 Sleep and relax well by strengthening your coping skills.

How good...........?

Rabbi Kushner has written a number of books I can recommend. The one I was recently reminded of was "How Good Do We Have To Be? Although ostensibly addressing guilt and forgiveness it is has served as a useful personal theme for me as a doctor as I ask myself if I am maintaining my "goodness".

I have a personal "quality model" I test and calibrate myself against:

A] Is my knowledge base as a physician up to date?

B] Is my interaction with the patient sitting in front of me focussed?

C] Am I communicating and adequately transferring information?

Maintaining knowledge currency is easy in our web-enabled world. Push technology sends daily e-mail summaries of medical journals I have subscribed to for content summaries. Data aggregators send daily disease orientated e mail summaries and links. Selecting articles of incremental, practical and clinical value, hospital medical librarians then send a .pdf full article back for review and filing in a data base for future reference. These are often useful patient education material.

Entering a room to meet with a patient is entering a vacuum with suspended time. I must be fresh, not interrupted and concentrating on the only patient I have - the one sitting in front of me! Not easy in the health care industry 2010 style: interruptions from cell phones, pagers, colleagues. The economics of re-imbursement that drives doctors to see more patients in less time, use "physician extenders" such as nurses, nurse practitioners and physician assistants. Less face time, less talk, less explanation, more potential for errors or missed cues that may help diagnosis or management. It takes discipline and office practice rules and efficiency.

The third rule follows the above creation of uninterrupted time. I use sketches to map out the information I believe the patient requires to participate in management decision making and understand the basis for my recommendations. I encourage family to be present and our discussions recorded. I publish my home e-mail address on my "business" card to encourage communication, questioning and dialogue.

Concentration, communication and clarity.

Alternative

Alternative, complementary, holistic are some of the buzz words swirling around the internet world of cancer advertisements, chat rooms and the like.

I consider health to be the sole responsibility of "we the people". In a book titled "Medical Nemesis" , Ivan Illich challenged what he called the "medicalization of society" and challenged the individual to take responsibility for their health. His argument is somewhat polarized but has merit, particularly when we look at obesity, smoking, drugs, alcohol, marital and work stress and lack of exercise in a large section of the population.

A satisfying job paying a fair salary is the cornerstone of an individuals health. It supports a good education, clean air and water, a sound roof over your head and simple food on a clean table. These form the foundation of health. Appropriate prevention from vaccinations to tooth and gum hygiene pays off. Being happy in marriage and relationships adds to the health formula. Awareness of personal safety at home, work and on the road saves lives. Maintenance of ideal body weight with good nutrition and exercise, being tobacco and substance abuse free add years of quality life and increases savings.

Integrating and balancing all of these elements promotes the best "environmental" impact on whatever genetic or inherited disease promoting vulnerabilities we may have.

Illness either acute or chronic is optimally managed by using all the assets and opportunities available. Sometimes patients will require a dentist, doctor. Some illness is best managed by a surgeon, others may require medication. Illich died of cancer rejecting medical intervention - not knowing his details precludes comment. He would have approved of the New England Journal of Medicine article indicating the impact of palliative care.

Waiting..

There is waiting and then there is waiting. Waiting for my patients as an oncologist does not fall into the group where waiting is an happy expectation. My patients wait with a spectrum of emotions, mostly negative. Anxiety, dread, fear are words I hear on a daily basis.

All of these emotions have a negative influence on the bodies biology. They cause stress and effect not only the patient, but also their support system, be it spouse, friend or family.

Waiting for the results of a test that will indicate cancer or a benign condition. Waiting for a report that will indicate response or failure to treatment. Life is suspended.

The solution is to minimize delay in arranging testing, maximize rapidity of response. This requires understanding of and sensitivity to waiting as a noxious element in the disease schema.

Creating "real time" communication between the medical team leader and subsequent feedback to the patient. Important scan in the morning? Verbal or e-mail communication between oncologist and responsible radiologist with feedback to the patient THAT day should be the norm. Not: waiting for the written report and expect a call from a nurse in a few days that becomes a week or two. That is a lifetime!

Special pathology will add a few days. Molecular analyses a week or two. But the "core" test outcome of cancer versus benign process should be known in a day or two.

Communicate!

Regret...

As my patients and I discuss choices and review the medical and personal factors that drive decision making, lurking in the background is the "regret factor".

The definition I choose for this regret is based on decision theory. In this sense I define regret as the possible opportunity cost or loss resulting from a decision. That is the difference between the actual payoff of the path taken, versus what might have been gained if the alternative choice had been made. See the following link for more background: en.wikipedia.org/wiki/Regret.

The side effects and trade offs of cancer treatments [ as a negative ] are balanced against the [ possible positive ] future gains. I simplify this important dialogue with the following "regret matrix":

1. The lesson: make sure you have an honest conversation with your medical team. Ensure you understand both sides of the equation; both the advantages and the "cost".
   
   
2. Know that all the "forecasting and probability" data is based on the average for a group of people. Review the statistics module in my companion website.
   
   
3. I suggest a simple model to help decision making in the companion website - click on the ADJUVANT DECISIONS tab in that section.
   

Guilt!

It has been a while. I have been occupied adding content to my web site and getting a feel for the "flow" of thought and information.

I was challenged today by meeting with a very close, and loving family of a elderly father and husband. The children wanted an opinion and travelled a distance from their home town with their father for that purpose. He has an advanced cancer diagnosed and managed by medical oncologists in, and near his hometown.

Now 82 he had been active until he developed dementia a few years ago. His wife of 64 years was present and relayed valuable information regarding his state of mind, present circumstance and comfort. He had heart disease, prior stroke, kidney failure but had NO complaints referable to his marrow cancer. He recognized with zest his family and knew the names of his children, and wife who accompanied him. He had neither pain nor any symptoms he could volunteer. He was in a wheelchair and was unable to give any significant account of himself apart from indicating he "was happy". He had outlived all his friends.

He had no living will or advanced directive and his intelligent and supportive family were his decision makers. His medical oncologist had recommended the placement surgically of a venous access [ port ] device and institution of chemotherapy.

We discussed his palliative options and they understood his condition was incurable. One daughter was a well informed, medically trained and experienced person. In the absence of symptoms, chance for cure and multiple competing disease they were educated about decision making principles, and had his facts applied to that thought process without emotional bias. They understood the consequences of chemotherapy and recognized the treatment side effects and regular office visits were a significant consideration.

He would not be capable of understanding the changes treatment would cause, nor did he have his own voice in this dialogue due to his dementia, and absent a advanced end of life directive.

The family felt collectively and individually guilty and had this, perhaps inadvertently, fueled by his doctor who proposed immediate active intervention and had not given a balanced discussion indicating support only as an option.

The discussion that evolved after my review of the patient, his condition and context allowed them to see their husband/father and not a diagnosis of myeloma. This resolution allowed them to harness their love and protective roles to focus on the quality of his remaining time. No guilt!