I'm a Happy Electronic Patient

I was nervous as electronic records were being rolled out at Group Health Co-op in Puget Sound. I already had a "consumer number" and was wondering how depersonalized this was going to get.

Then I went on-line and joined MyGroupHealth which gave me my own secure web page. There was only a bit of a learning curve as I went to the computer to make an appointment with my GP. I was surprised to find his on-line schedule available and open at a time I wanted, so with a click I booked myself for that time slot - no scheduler, red tape, or call backs. I got a secure email reminder before the appointment asking me to fill out my history on line. Reminders were flagged that I hadn't had a tetanus shot in more than 10 years and I was due for lipid screening and colon cancer screening.

I learned that my medications could be refilled by checking a box on-line and they would be mailed to my home. The lab tests were posted and available for review as were all prior tests, X-Rays, and procedures. There's even an iPod app available for pharmacy and lab wait times as well as checking my medical record on the go.

One weekend I had a flare of my sinus disease with a 102 fever. A consulting nurse, available 24/7, reviewed my records as I talked with her by phone, and it was apparent which antibiotic seemed most appropriate to start without delay.

Then I lost one of the lenses in my glasses. Fortunately the recent results of my eye exam were available on-line so there was no delay in getting a replacement at Costco (we were out of town).

When going in for surgery, there was a complete record of my allergies, meds, prior surgeries, etc. There were no lost charts and no confusion about my case.

Also, on-line I can research the management of any illnesses I might have on the secure web site. This information has been vetted, thus more useful than scouring the many internet sites. Also, I can look at my life style risk factors and see where I need to focus on diet and exercise.

So I don't find this at all depersonalized. It puts me in the driver's seat and helps the docs focus on the sicker patients. Since they are salaried without the requirement for "face-time", they conduct many "virtual visits" in a very cost-effective way.

My advance directives including a Living Will, Values Statement and Durable Power of Attorney for Health Care are also stored in my electronic data base at Group Health and are available 24/7. So if and when there's a crisis I have a good chance that these important documents will be readily available.

Hopefully, medicine will continue to evolve using all the benefits of the electronic record. As an "electronic patient" I'm certainly a fan.

A Lethal Injection

I entered the exam room as intravenous catheter was being inserted expertly. The procedure had been explained to me. I wanted to be there to comfort my friend in his last moments. Life had been getting difficult and the infirmities and pain too severe. The doctor entered the room with an appropriate look of sympathy on his face and reviewed the case agreeing that my friend's quality of life was severely impaired.

The sodium pentothal was slowly injected IV. I saw a questioning look on my friend's face, he then slumped to the table and died. Being unconscious, his breathing almost immediately stopped, then the heart beat ceased a few minutes later. It seemed so fast.

I loved my friend, my companion, my dog. We walked in the park or on the beach every morning. He greeted me, my wife, my children, and my grandchildren each day like long lost friends. His goal in the yard (thus in life) was to be protective seemingly at all costs.

Today we grieve, but not like when I lost my mother or father, or when I lost a patient. It's a mixture of sadness for our loss, but contentment that he didn't suffer and could have a peaceful end.

Many patients over the years asked me for a peaceful painless end. Before hospice and palliative care, a patient would often sense abandonment or a loss of control at the end saying, "Doctor, my dog was treated more humanely at the end than my father was." Ironically, my experience today has brought me to question how humane we humans really are in our treatment of each other at the end. Do we have lessons to learn?

Making Our Values Known

One day in my office, an elderly couple said that they had a document they wanted to add to their advance directive. It went as follows:
"I have a firm belief that God created me, that there is a natural cycle of life, that death is inevitable, and that dying should be peaceful, comfortable, at home, if possible, and without tubes, artificial nutrition and ventilator support. If I cannot carry out self care, do not have my usual mental faculties, or have an incurable disease or intractable pain, please treat me with the best care for comfort but not invasive life support care. It is quite acceptable to withhold fluid and nutrition from me and treat me with a morphine drip as part of this care for comfort, letting nature take its course. I have no wish to be a burden to my loved ones, or to spend resources and energy on heroic efforts to prolong my life when life is at end. Only in the acute situation (e.g. trauma) would I want heroic life support to try to get me back to my present state of good health. My worst nightmare is to spend my days in a nursing home with a feeding tube. Quality, not quantity,of earthly life is more important". I was delighted that they had taken the initiative and that we could talk things over.

This type of statement can be added to one's living will and serves as a very important guide to the physician and your loved ones. The conversation is focused on your values, not just on what high tech marginally beneficial treatment could be attempted. Please consider doing this or something similar such as a Five Wishes form or one from Compassion and Choices. Also, general values statements can be of use.

The ultimate document putting values into medical orders is the POLST form, but this form is generally most applicable in the last year of life, for hospice patients, or for the frail elderly who are sure what they would or wouldn't want in a medical crisis. For the rest of us, the addition of a values statement to our living will (plus having the important discussions with our family, friends, physicians, and durable power of attorney for health care) will be our best assurance that indeed our wishes will be respected.

Saying Goodbye - The Descendants

The young woman lays dying suffering severe brain trauma from a boating accident. Her husband and two daughters are devastated each in a very different way. Friends try to help and also need to say goodbye. The advance directive is clear and there is no conflict that her wishes need to be carried out. A date for removal of the ventilator is set, and all come to say goodbye is their own way. Grief is mixed with anger, blame, love, confusion, and a need to control.

This story doesn't sound like Hollywood, yet this end-of-life story was surprisingly released in this pre-Christmas season. George Clooney's leading role in The Descendants plus the film's gorgeous setting in Hawaii should help draw folks to the box office even though some critics find the story depressing - a mixture of humor and sadness.

The thing that strikes me about this very well done movie is that it's really not about the end of a life. It's about how we grieve and become more real as we finally face emotions as they surface, as we assimilate new facts and as we deal with old unresolved conflicts. Can we be angry at the dying person or each other? You bet. Can teens act at their worst? Of course. Can we make more ethical decisions about how to live our lives? Maybe.

So if you want to laugh, cry, grieve, and have hope for our humanness, go see The Decendants!

Is it Time for Hospice?

I was on the phone last night with a physician colleague. George (not his real name) had, as his first symptom, excruciating pain in the mid back and left shoulder. The pain was so severe that he ranked it a 10 out of 10. It didn't take long to diagnose the problem - pancreatic cancer which had invaded the diaphragm and spread to the lungs. This was only three weeks ago. Just prior to that he'd been well, hiking and river rafting - two of his favorite things to do in retirement. After seeing Oncology, chemotherapy was initiated mostly to try to control the pain.

Without George being able to attend, a small group of us gathered last night to give both phone and written messages to him. It was sad yet uplifting. All were worried though that George's pain wasn't really well controlled. When I got on the phone with him, his voice sounded strong, "the problem is that I didn't tolerate chemo, the pain is still there and I'm not sleeping well. I'm not afraid of death, but I just don't want to be there when it happens (saying that this was one of his favorite quotes from Woody Allen)."

I said, "George have you thought about hospice? I know this has been so quick but they can make your days so much more comfortable."

George was ahead of me, "I'm calling them tomorrow. Also, I've checked out the Washington State End of Life Coalition. They have excellent resources for someone like me including information about palliative care, hospice and the POLST form. I'll need to work with my doctor on that."

What else was left for me to say? I told him that we were all thinking of him and of the great times we had traveling together. Basically it ended with, "God bless, we're keeping you in our prayers." I don't know what really helps, but it helped me and my wife to at least try to reach out.

A Note From Israel

Below is a commentary that I have permission to pass on from Dr. Leibovich. It points out to me that the issue of forcing the dying patient into the hospital may be an international problem, especially in the more developed countries.

"Today I found your blog on End of Life issues. I spent several hours reading all your posts, and I wanted to thank you for writing.

I want to apologize for my basic English, but I hope you'll understand. I wish I could write like you do…

I am a family physician in a Kibbutz in Israel and I take care of almost all the people in the Kibbutz, from birth to death. I am faced with end of life issues quite often, and I feel that I have the exact same views on this like you. I am fortunate to be able to help many patients and families to avoid futile hospital care, and this is one of the things I am very proud of.

A few months ago I took care of my stepfather who lived in a fancy place for old people who can take care of themselves and live alone in a nice flat, but they have a restaurant, have cultural activities etc, in a big city. (I don't know what this kind of place is called in English – here it's called something like "sheltered living"). At the age of 89 he started getting weaker and needed more and more help with his daily activities, until finally he needed constant care. Cancer was diagnosed. We got someone to take care of him 24 hours a day. When he got to the stage where he needed a wheelchair the management of this place did whatever they could to get him to leave – to a nursing home (with four people in a hospital bed in a room), a hospital or whatever. He had already sold his previous home, and he expected to live in this place for the rest of his life. He was alert and understood they wanted to get rid of him, as this spoiled their nice place for "the young at heart". They referred me to the contract where it says that this is a place for independent people. I managed to take care of him in his flat and refused to take him to the hospital, as this was his explicit wish, and we all knew that there was nothing they could do better in the hospital than we could do in his own home and bed. In the last week of his life I was there most of the time, gave him medications against pain, and he passed away in his bed surrounded by those who loved him. I was very happy to have been able to do this for him. I was very sad that this had to be done fighting the management all the way. They threatened me that I was denying him adequate care in a hospital, where he should be in his situation. I ignored them as I knew his time was getting short, and I didn't believe they would try to evacuate him forcefully in his situation. He passed away a day before another meeting they set up to tell me I had to take him somewhere else.

So I am glad to read your stories that show me that I am not alone in the thought that if there is nothing more medicine can do the best place for a person to finish his life is in his own home, if this is what he wants.

All the best, Mira Leibovich, MD - Israel"

Honor the Advance Directive - or Not?

I gave a lunch time talk at a retirement home today to a group of about 60 pretty bright folks including judges, chaplains, professors, etc. The subject was "Your Life Your Choices", a program oriented toward educating families about the value of advance planning and how to make their values and wishes known. The discussion was dynamic and lively.

One consistent point about advance directives is to preserve the patient's autonomy for decision making by having a person "close to their heart" act in their behalf when the patient is no longer competent.

After the session and discussion, a lady quietly approached me and asked if she could have a moment of my time. She said, "My husband has worsening Alzheimer's and can no longer care for himself reliably. He's been transferred to the Memory Care Unit. The doctors say he is no longer competent to make any health care or financial decisions so the burden is entirely on me, but I have a problem. My husband said a few years ago and signed the papers that he would want full life support including fluid and nutrition to sustain him. But I don't know if that's the right thing to do now."

My first thought was to advise her to meet with her doctor and a palliative care or hospice provider to look at all the options with their benefits and burdens. Also I advised meeting with a social worker and/or a spiritual counselor to explore the difficult decisions and to meet as an entire family unit. Then I asked her, "Do you think if your husband's heart stops that CPR would benefit him?"

"No," she replied. "But I'm not sure what his wishes in his present situation would really be. He never talked about quality of life issues much."

I tried to reassure her that there were no clear guidelines in this situation. To try to take the burden off a bit, I told her that doctors in general didn't feel obligated to provide treatments to patients that are not beneficial. She gave me a sad smile saying, "thanks, but I still don't know what to do."

Comment: It can at times be very difficult for a surrogate to truly know the wishes of the patient who is ill and can't further discuss their status. That's why I encourage patients to write an addendum to the Living Will giving their overview of "quality of life." What are the biggest hopes and biggest fears about the end of life? What would be acceptable or when to "pull the plug"? The more we can let our surrogate know our true feelings, the better the decision will be, but it's hardly ever easy in the gray zone such as with this patient.

An example of fear is the story of Chopin's heart. His great fear was being buried alive so he had his physician promise to remove his heart at death, thus ensuring he was dead! Chopin is buried in France but the heart is enshrined in a church in Poland, a significant tourist draw. Chopin's wishes were honored. May we all have surrogates that know our own hearts.

Saving Health Care Costs the Easy Way

How would you like to have physicians in the USA cut health care costs by more than 6 billion dollars a year in a rather simple non-painful way? A recent study in the Archives of Internal Medicine looked at rather commonly done tests and prescribed medications.

The National Physicians Alliance (NPA) initiated a project called “Promoting Good Stewardship in Clinical Practice.” They have published lists of the “top 5” activities in primary care (family medicine, internal medicine, and pediatrics) that could improve both care and the use of clinical resources. After testing showed physician support for these evidence-based, cost-saving, easy-to-implement activities, the group published their lists with simple guidelines like:

1. Don’t do imaging for low back pain within the first six weeks unless red flags are present.
2. Don’t obtain blood chemistry panels or urinalyses for screening in asymptomatic, healthy adults.
3. Don’t order annual ECGs or any other cardiac screening for asymptomatic, low-risk patients.
4. Don’t use bone-density screening for osteoporosis in women under 65 or men under 70 with no risk factors.
5. Do use only generic statins when starting lipid-lowering drug therapy.

The biggest savings was by the use of generic statins, but all of these five steps were well supported by medical evidence and had peer group support.

If medicine were a large business with careful accounting and accountability, these five steps would be implemented (or the manager fired). But we have a large messy expensive system with little accountability.

Can we step up to evidence based peer supported medical practice? Otherwise I fear the cuts (which are coming) will be painful and illogical.

Can We Talk About Death?

"Medical training rarely deals with helping the dying patient find peace and comfort. In fact, most physicians are uncomfortable with the entire subject. I believe it is one of the most neglected aspects of medical care. I have spent my career as a pulmonary and critical care physician, and I have cared for thousands of dying patients. In many cases, both the patients and I knew that they were dying. After I provided clinical and supportive care, I would walk away from their bedside and go on with my work and go home to my family. Now the world has turned around for me. I have widespread metastatic disease to my lungs and bones."

This was written by the prominent physician educator Roger Bone as he was dying and exploring the classical literature about death and dying. In Bone's extensive search of classical literature he found little to explain death itself. "In summary, the great classics, the most significant works in literary history, have had a seminal effect on the behavior and attitudes of our world today, concerning themselves as they do with the issues of love, tragedy, seduction, pride, intrigue, suspense, murder, vanity, fantasy, evil, cruelty, greed, adultery, deceit, depression, fear, brutality, hypocrisy, pride, chivalry, heroism, romance, honor, loyalty, and friendship. But only rarely do they deal with an understanding of death. Notable exceptions include the passages visited above, most memorable in the scene of Beth's death in Little Women, Emily's death in Our Town, and Thoreau's observations in Walden. I examined the classics closely for answers and was left with the conclusion that if you have limited time, read Thoreau, Alcott, and Wilder."

Perhaps we can get a glimpse about the "D" word from authors. "Dying is a very dull, dreary affair. And my advice to you is to have nothing whatever to do with it." (Somerset Maughan) Perhaps the denial that we all have is healthy to some degree, but ultimately harmful when we have to face and plan for the inevitable.

"It's not that I'm afraid to die, I just don't want to be there when it happens." (Woody Allen) The point here is that we really do have some fear, and that denial can be humorous as long as we're not facing a real crisis.

"Life is pleasant. Death is peaceful. It's the transition that's troublesome." (Isaac Asimov) I often heard this from patients, "It's the dying I'm afraid of!"

Advance planning is something we, as a society, don't do well. Most of us tend not to save adequately for retirement, don't execute wills, and don't complete advance directives. Appropriately we tend to live in the present, "the now". So how do we deal with educating ourselves, our leaders, and our governments to balance "the now" with "the future". Ultimately the education about advance planning needs to come from the heath professions, medical societies, communities, states, and the federal government. Viewing this as a public health issue with the rapid aging of the population, the CDC has created a program to educate heath professionals.

None of this, of course, really addresses the mystery of what follows death. Roger Bone found his comfort in the Bible, Helen Keller in Swedenborg's writings in Heaven and Hell, but the journey remains ours alone, hopefully with our creator gently carrying us.

Why I Didn't Become a Surgeon

Every medical student goes though a process of elimination when deciding what kind of doctor they want to become. We hear the old saying, "Internists know everything and do nothing; Surgeons know nothing and do everything; Psychiatrists know nothing and do nothing; Pathologists know everything and do everything but it's too late." We hear that pediatricians wear bow ties, are short, and love to laugh and play; that surgeons are decisive but arrogant; that proceduralists are "scoping for dollars", that orthopedists have long hairy arms that reach to the floor, that family doctors are the best balanced, etc. There may be grains of truth in the medical school palaver, but I think we decide both based on our experiences during medical school and our own personality (plus the need to repay school loans).

The first case I ever scrubbed in on was an open heart procedure back in 1963. The unfortunate patient had severe aortic stenosis (narrowing of the valve) in the days before artificial valves were invented. Having changed into my scrubs, put on my cap, paper booties and scrubbed in, I meekly entered the inner sanctum of the OR. The head nurse spotted me and immediately barked, "Here take this gown, go stand in the corner and don't do anything until I tell you."

Other staff came in and one by one put on their gown and gloves. This is a little tricky because you can't touch anything, otherwise you're contaminated. As you might suspect, I put my gown on wrong, was barked at again but given a second chance. Finally I was at the side (almost the foot) of the operating table, trying to peek around the two residents assisting the thoracic surgeon. A huge incision was made, a blade much like a small hoe inserted and the handle given to me, "Here, here's your job. Keep pulling on this so I can see. Harder!!"

The left ventricle was punctured bluntly and a curved blade-like instrument inserted up through the aortic valve in attempts to open it up. There were dense calcium deposits so the going was tough. After several tries, the operation was completed, bleeding controlled, and the patient sent back to the surgery floor.

Almost immediately the patient had low blood pressure and a slow heart rate - not good signs. I was asked to sit at the bedside and administered a levophed drip to try to keep him going. He died at about 3AM. At the autopsy, it was found that the wall between the left and right ventricle was punctured, not the aortic valve. I don't know what the surgeon felt. He was the author of the major textbook on thoracic surgery and the author of many papers. This was in the very early days of heart surgery and it had to start somewhere I suppose, but it didn't make me want to be a pioneer.

The pace of the surgical service was amazing. The chief would arrive at 6AM and expect the residents to give him full report on the status of the patients. He would be in the OR from 7 to 9AM, then off to a breakfast with the University Regents. There was a pecking order and pyramid system for the surgical residents' survival. It was very difficult to survive this structure to become a chief resident.

After all this, I chose Internal Medicine and ultimately more training in Infectious Diseases, Pulmonary and Critical Care Medicine. Strangely, the intensity of the ICU isn't that different from the operating room. But in the OR, there is only one leader. You don't break for a conference or try to reach a team consensus. The surgeon is expected to know what to do, to do it well, and to do it fast (better outcomes with less time under anesthesia). As a nurse said, "The surgeon is like a god in the OR".

But surgery is changing. I walked into the ICU to see a post-op consult in recent years, and asked the "nurse" what the vital signs were and her assessment. She kind of smiled and said, I'm the new Urologist and just created an artificial bladder for this patient with bladder cancer. I profusely apologized for my gaff and she let me off gently. In fact at the nurse's desk later, I asked her to explain the surgery. She replied, "It's just sewing. You take a piece of colon, make a pattern, stitch it all together, plug in the ureters from each kidney, and voila!"

Well, although you might see why I didn't become a surgeon, I hope you understand that I have great respect and awe for their arduous training, for their skills, and stamina, and, yes, guts.

The TB Blues

Should we all have the TB Blues? I think you'd agree that we should after listening to this 1931 classic by Jimmie Rodgers who died from TB.

Tuberculosis is known to have existed in ancient Egypt and TB may have even been referenced in the Bible - “The Lord will smite you with consumption, and with fever, inflammation, and fiery heat …” Deuteronomy 28:22.

Many well known authors, artists, musicians, and others suffered or died from TB. Perhaps the most notable family severely affected was the Bronte family:
Maria Bronte (wife) dies of tuberculosis – age 38
Maria dies of tuberculosis – age 11
Elizabeth dies of tuberculosis – age 12
Bramwell – d. 1848 age 30
Emily dies of tuberculosis – age 29 (Wuthering Heights)
Anne dies of tuberculosis – age 27
Charlotte dies of tuberculosis and complications in pregnancy – age 39 (Jane Eyre)
Rev. Bronte dies 1861 – age 87 of “chronic bronchitis”

No one had a clue about the cause of tuberculosis, until the little known German physician, Robert Koch, astounded the scientific world with proof that he could stain the TB bacillus, that it was isolated from patients, and could be transmitted from animal to animal (guinea pigs).

After Koch's discovery, patient isolation and TB Sanitariums began to open where bed rest was the primary treatment. Little progress was made until the era of drug treatment which began in the late 1940's.

As a medical student on the East Coast, I was lined up at school in 1963 and given BCG, the TB vaccine which has had variable but limited use in TB prevention in the USA. Calmette and Guerin in France in the early 1900's had painstakingly developed an altered strain of Bovine TB. Even thus vaccinated, after being exposed at an autopsy of a patient with far advanced TB, one of my classmates developed active tuberculosis, was sent to a TB San and missed a year of school. In 1943 Selman A. Waksman was successful in developing the first anit-TB drug, for which he received the Nobel Prize (as did Koch previously) . Streptomycin purified from Streptomyces griseus was first administered to a human on November 20, 1944. Other drugs like INH, PAS, Cycloserine, Ethambutol, Ethionamide, PZA, and Rifampin came along one at a time. That was a problem, because it was soon discovered with exposure to just one drug, the TB germ could fairly rapidly develop drug resistance.

I saw a few cases of TB while in medical school, but many more during my fellowship in Infectious Diseases and in heading the admitting TB Ward at Firland Sanatorium in Seattle for a year or so. This was a teaching and research institution with academic affiliation so anything unusual that might be TB was admitted there. In the 120 or so in-patients at that time, there were a few with what we now call MDR TB - multiple drug resistant organisms. This was inadvertently caused over the years by adding a new drug one by one as they came along. But lessons were learned and these patients subsequently had extensive drug sensitivity assays with tailored multiple drug regimens, sometimes four or five drugs plus the need for occasional surgery.

One night, a chronic patient woke up spouting blood from his mouth and nose. A bridging artery in a TB cavity in his lung had burst. He died within minutes. This is one of the "classical deaths" well described in TB literature as well as classical literature. A biography of Keats shows the unfortunate ignorance of physicians adding to the poet's suffering with consumption, a fate of many other well known persons.

After TB Sans closed across the nation in the 1970's there was unwarranted optimism that TB would be conquered in this country by 2025. TB care and control went to private physicians like me and to overworked health departments. Case tracking and medication adherence in populations was shockingly poor leading to outbreaks of MDR TB in large urban cities like New York. Subsequent strategies have developed to address the need for careful drug planning and directly observed therapy - both of which drain resources and budgets.

Then HIV came along in the 1980's which proved to be an explosive situation for patients co-infected with tuberculosis. Both are treatable, but the treatment for TB remains complex usually with four drugs for two months, followed by at least two drugs for four additional months. MDR TB/HIV epidemics continue with newer reports of extensively drug resistant strains. In South Africa the Journal Lancet reports a large number of XDR TB patients who, when also infected with HIV, rapidly died within a few weeks of diagnosis.

In the USA, we will continue to see sporadic cases of TB most often in those born in countries with a high TB incidence, the homeless and under-served, and in Native American populations. An Asian corporate executive with a fever, voice change, and cough was referred to me for evaluation. His chest X-Ray was suspicious for TB and on exam there was a bulging mass pushing the back of the throat forward and narrowing the airway. To make a long story short, this patient had TB of the cervical spine as well as pulmonary TB. He responded beautifully to modern TB drugs and is cured.

An African born high school patient was referred with fever and a pleural effusion. Fluid cultures, cancer checks and blood tests were all unrevealing. Finally I did a pleural biopsy and pleural culture (after two weeks of head scratching). Yes, it was TB. His skin test was only weakly positive at 5mm. Again, he was cured.

A Caucasian patient was brought on a stretcher to the TB san in 1971 with wasting, fatigue, pallor, cough, and a diffusely abnormal X-Ray. This 17 year old girl had been seen at her home off an on for six months for "pneumonia" by her MD uncle. Her TB was far advanced, oxygen levels low, and nutrition very poor. Basically she received standard drugs, vitamins, good food and classic bed rest. She spent two years recovering but permanently lost 60% of her lung function. A few of us attended her wedding several years later.

A diabetic patient had severe lower abdominal pain. A laparotomy (prior to the days of CT scans) was unrevealing. However review of her abdominal X-Rays showed destruction of two lumbar vertebrae from TB, causing the referred pain in the abdomen. Again, treatment and cure was straight forward.

A 70 year old woman from India, developed fever confusion, neck stiffness and went into coma. A spinal tap was suspicious for TB, but not proven. Aggressive treatment for TB allowed this woman to recover and ultimately return home.

The classic historical book about TB is by Jean Dubois: The White Plague: Tuberculosis, Man, and Society. But TB is still a modern plague and killer in much of the world particularly where there is poverty or social disruption. The astounding data from the CDC is as follows:

Tuberculosis (TB) is one of the world’s deadliest diseases:

* One third of the world’s population are infected with TB.
* Each year, over 9 million people around the world become sick with TB.
* Each year, there are almost 2 million TB-related deaths worldwide.
* TB is a leading killer of people who are HIV infected.

In total, 11,545 TB cases (a rate of 3.8 cases per 100,000 persons) were reported in the United States in 2009. Both the number of TB cases reported and the case rate decreased; this represents a 10.5% and 11.3% decline, respectively, compared to 2008.

So what's being done. Paul Farmer's book, "Mountains Beyond Mountains" gives a picture of his personal and academic attempts in Haiti and outlines the scope (and hope) for workable programs. The Bill and Melinda Gates Foundation supports multiple programs in Global Health and many medical schools now are focusing on "translational research" to focus on the needs. Organizations like Seattle Biomed, Infectious Disease Research Institute,and the Oxford-Emergent Tuberculosis Consortium are working toward TB prevention (vaccines) and novel identification and targeted drug management.

But TB control came to the USA largely by reducing crowding, improved case identification and control, better nutrition, and better housing. Seattle was designated a "TB swamp" by the government in the early 1900's but all the above measures have probably had more impact than drug treatment per se. TB was well on the way to declining in the USA before the effective drugs were initiated in the 1950's. So long term control and eradication will need both social and medical improvements to attack the very sad deaths of nearly 2 million people each year - each one preventable. Singer Josh White also has a classic recording of the TB Blues, but I enjoyed this version of TB Blues by Merle Haggard the most!

Futility Revisited

Thanks to all to took the time to provide excellent comments my previous post "Was it Futile? Here are a few of my additional thoughts.

A DNR (do not resuscitate} order is indeed a physician order. However, even with a co-signature of a colleague, it's probably quite rare and certainly ethically questionable in the USA for this order to be written without the consent of the patient/surrogate. In the futility case I presented, even at the beginning I thought it was medically unwise and non-beneficial to intubate this patient with end-stage lung cancer. But respecting the patient's autonomy ("do everything, I'm hoping for a miracle"), I felt obliged to go down the extraordinary life support path.

This particular patient was persistently hoping for a miraculous religious healing, hence she sought additional therapy in another country even with stage 4 lung cancer having "failed" with the best the USA has to offer. Atul Gawande in his New Yorker article, "Letting Go", points out that there is almost always more that we can do. It may turn out though that "more" ends up only prolonging suffering and the dying process.

Ethics Committees (EC's) vary in their effectiveness from hospital to hospital and appear to be quite underutilized. The more robust EC's will include the patient/surrogate in their deliberations, rather than having a closed door process making a pronouncement. I agree that EC's don't make clinical decisions, but when agreeing that withdrawal of a ventilator is permissible, they are basically tacitly agreeing with the physician assessments. Sue Rubin, Ph.D does excellent training for a methodology of EC's to use which she recently presented to the EC I serve on.

In this particular patient the husband had the DPOA for Health Care and would also be so designated under Washington State law. He was competent even though he'd had a stroke. He was firm in supporting his wife's wish for a miracle to the end, though the children felt very conflicted and saw the hopelessness of the situation.

When to stop CPR is an interesting question. In the old days, we'd do a "slow code" and allow the patient to die without much trauma. The "slow code" is really dishonest and unethical, so what about calling off a code after 10 seconds? Shouldn't a "no-code" order have been written if that's the case? Are there published policies on this?

I'm going to guess that Jecker and Schneiderman would recommend as follows: in this case the physician had no duty to provide a treatment which was not going to benefit the patient, despite the patient's hopes for a miracle. The doctors should so inform the family. If there's disagreement an EC consultation could take place. Assuming the EC felt that discontinuation of life support was reasonable, the surrogates can agree or work on a transfer plan.

Dr. John Luce several years ago wrote an editorial in the journal Chest, in which he likened a situation like this is France and in the USA. In France, there is much more of a tradition of the doctor's authority or what might be called a benevolent form of paternalism. There are limited visiting hours in France in their ICU's. When the doctors find the situation hopeless, they would extubate the patient, allow them to die with appropriate comfort measures, and then let the family know that their loved one was gone. In the USA, autonomy of the individual has the highest value and often trumps other ethical values. Thus, we expend lots of energy, angst, time, and money in honoring the patient's autonomy. In theory this should work well and it often does. However, I think the case in point shows that some kind of limits need to be set. Schneiderman and Jecker talk of both quantitative and qualitative futility. They plead for communities of patients, doctors, hospitals, and nurses to come together in some common understanding of a community wide futility policy. Lots more discussion is needed.

Was it Futile?

I was surprised to get a call from security at SEA-TAC airport that my patient was being transported by Medic 1 to our hospital shortly after touching down. Mary had been insisting on more care for her stage 4 lung cancer and was holding out for a miracle. She had gone to another country for what she described as "the miracle cure" so I had lost touch for the past few months. The Medics called in that she had shallow respirations and had borderline BP so we admitted her directly to the ICU since she was still "full code" status per her wishes and written advance directive.

Shortly after arrival, Mary's status deteriorated with falling oxygen saturation despite non-invasive ventilation and other support. She was intubated and placed on a ventilator with the usual accompanying measures of tube feeding and close monitoring for infection or other complications. The chest X-Ray showed her tumor masses had grown in the relentless way they do. She had known liver, bone and brain metastases.

The family was conflicted. Her husband had had a stroke and was unable to actively communicate yet he attended our discussions and expressed support for his wife's wishes. The children were more unsure. One wondered if we were only prolonging her suffering, another felt his mother couldn't have been in her right mind to keep going on with invasive treatments that were hopeless.

I was frank with the family. Mary was beyond any hope of recovery and extremely unlikely to ever get off the ventilator. I couldn't hold out hope for Mary, now unconscious, and recommended that the family consider withdrawal of ventilator support (a better term here than life support). This conversation took place in steps over several meetings and I tried to introduce the concept of non-beneficial or futile care. The family remained conflicted and could not come to a decision. After three weeks in the ICU, Mary's heart stopped and the nurses, much against their wishes, had to perform fruitless CPR. Mary thus died in a traumatic way, ribs broken from chest compressions, suffering the kind of technological imperative that's sarcastically referred to by the staff as "medical last rites."

Comment: There are two books out with take opposing views on the concept of futility. Susan B. Rubin, Ph.D argues that "...no current formulation of futility is sufficient to justiy physician unilateral decision making." The author, in her book "When Doctors Say No" has well reasoned concerns that futility may not really be the issue, may deflect important discussions, may trump the autonomy of the patient, and is simply a concept that society (and the law) has not really come to terms with.

An opposing view comes from Schneiderman and Jecker in their book, "Wrongful Medicine". They argue that physicians have the duty in defined circumstances not to provide certain treatments based on doing no harm, non-beneficial effects, and their definition of futility. They point out that many specialty societies and hospitals now have futility policies in place.

I think the debate is healthy and that we will gradually develop robust policies in our hospitals and long term care facilities that can balance the sometimes conflicting ethical principles of autonomy, non-maleficence, beneficence - and come to some reasonable process of dealing with the futile cases in our ICU's. I suspect that in nearly every ICU in the USA, that there is a current or recent patient where this discussion applies. For the legal aspects of the futility debate please see Thaddeus Pope's excellent blog.

Now I have a question. Assume that our hospital does have a futility policy, assume that a formal Ethics Committee opinion on day 3 is that this patient's care is indeed futile. Should I tell the family that we plan to discontinue ventilator support and provide excellent palliative end-of-life care? Let's say the hospital policy gives them 48 hours to find another facility willing to provide on-going ventilator care (It's doubtful even with our help they can find one willing to take her). Are we ready to pull the plug against the wishes of the family and previously stated wishes of the patient?

Communicating With Patients And Families About Difficult End of Life Decisions

Introduction: Several years ago a Social Worker and I put together a teaching module for hospital teams to use when discussing difficult decisions with patients and caregivers. We tried to model the discussion around shared decision making and making explicit the ethical principles at play.

Common oversights, mistakes, or systems issues:
- Avoidance by physicians. Issues painful and hard to discuss
- Conversely, too many of the staff asking patient about “code status”
- Wait for patient to bring up issue
- Wait for a crisis, deferring the discussion to another provider
- Focusing on “code” issues rather than broad picture of patient desires & options
- Trying to accomplish too much in a short period of time
- Not giving a clear picture of options with your recommendation to the patient
- Inadequate documentation and communication with all the stakeholders
- Inadequate systems support for the patients, families and providers


Our Methodology For A Patient Care Conference
(Deliberation About Difficult Care Decisions)

1. Beginnings
Case Selection. In addition to the attending physician, a number of people can help initiate a conference. Nurses and social workers, in communicating with patients and families, often help to identify the issues and determine the need. There are several situations where conferences have proved particularly useful: e.g. withholding or withdrawing a treatment, particularly where there is a struggle or disagreement with how to proceed; intensity of future treatments; code status; and PEG tube placement. There may be communication, cultural, and language issues that can be best addressed by convening everyone involved.

Conference attendees and location. Arrange a meeting with all the stakeholders available. These may include the patient, family, physicians, nurses, other providers (e.g., respiratory therapists), social worker, pastor, etc. Consider a conference phone for relatives not present. If a stakeholder is excluded, they may feel alienated and become obstructive to decision making. Social workers actively participate in the discussion and help to keep it focused. Meet in a quiet, private, comfortable area. An experienced attending physician, nurse, or social worker should be chairperson and lead the group through the case conference method. Successful leadership requires mentoring and experience and should not be left to a junior or inexperienced person. Attending physicians must reach a consensus about the medical prognosis before the meeting begins.

2. A moral community
Explain the general use of this discussion method. All present introduce themselves and explain their role in the care of the patient. Decide prior to the meeting who is to keep notes and how—by hand, flip chart, etc. The chair then outlines the use and importance of a structured format for the discussion and introduces the concept of a moral community.

An opening statement sets the tone with values and objectives for the meeting. If the patient is absent, recognize the fact and point all discussion toward the patient, what he/she
would want, and share the difficulties of knowing. State that good will is assumed, that all input is welcome and all perspectives are valued, and that confidentiality is expected. Warmth and caring must be communicated. Setting the tone in this way allows the group to begin forming common values and goals for the discussion. The group also realizes that there are not always clear “right or wrong” answers, that values may conflict, and that disagreement about values is quite permissible.

3. Medical information
The attending physician gives a discussion of the patient’s medical status in lay terms, presenting such information as x-rays, laboratory data, and a time line of the illness. The time line should include previous outpatient contacts, if any, and the course of the patient’s care up to the present. This process allows families to view the patient’s medical status as a structured progression rather than a series of isolated events. Allow time for questions and clarification of factual information.

4. Patient preference
Focus next on the patient as a whole person: life, activities, interests, attitudes, etc. Who can speak on the patient’s behalf? Discuss the advance directive and durable power of attorney, if available. Talk more about practical aspects of daily life than abstract ideas about “quality of life.” Elicit input from all present, and acknowledge those stakeholders who may be absent.

5. Medical prognosis
The attending physician should give a medical prognosis and be as informative as possible, referring to tangible experience and the medical literature. It is often useful for physicians to discuss their personal experiences with similar patients. Discussing other cases and their outcomes helps the family recognize that their situation may not be unique, and that the providers are familiar and experienced with clinical problem in question.

6. Feelings
Review the discussion up to this point and identify the feelings of the loved ones and providers. Where are they in their thinking (e.g., focused on patient’s desires)? What is the “ideal picture” that all would hope for? This important step gives the participants a chance to voice their wishes (at times wildly unrealistic), and allows for tears and expressions of frustration or caring. It recognizes that the conference is not a mechanistic exercise but an emotionally charged, highly personal interaction. The leader can simply say, “How are you doing?” or “Do you have feelings about this?” Eliciting and acknowledging these issues extends support to those who have difficulty offering their perceptions and feelings to the group.

7. Options for treatment/withdrawal/care for comfort
Discuss all the options that could be carried out. Give the pros and cons (benefits/burdens) of each option and ask the group to consider which option the patient would prefer and why (make the reasoning explicit). This is the time to discuss legal “what ifs”; if introduced earlier in the conference, they tend to sidetrack and dominate thinking. Don’t focus only on CPR, but list all the therapies, both helpful and potentially harmful. Allow all stakeholders to contribute. The attending nurse can outline methods of non-invasive care, e.g., personal care for comfort, sedatives, morphine. etc., that can provide relief from possible pain and suffering.

8. Leadership
The attending physician has a special duty to give a clear recommendation for one of the options discussed in a “caringly direct” manner. This recommendation should, of course, be based on data, experience, and, most importantly, knowledge of the patient’s wishes. If the physician avoids the leadership role and declines to make a recommendation—effectively placing the entire burden of choice on the patient or family—the unfamiliarity, fear, and guilt may place decision making on indefinite hold. This may create unnecessary delays, confusion, and suffering. The physician should also discuss why he/she is recommending against the other options.

9. Consensus and Support
Reach as great a consensus as possible. Summarize the meeting and schedule the next step (e.g., reconvene the next day, remove the ventilator, modify the code status, etc.). Often the patient or family need some time to process various options. Nurses and social workers at the conference have a continuing role in helping the patient and family work through the issues raised at the conference. Conclude the meeting by going around and asking those present for closing thoughts. An informal consultation with an ethics committee member can be very useful if the meeting ends in an impasse. Occasionally, a formal ethics committee review can be requested for further deliberation (but not to referee an impasse).

In general, the nurse provides the most continuity for family and patient support in the care process. If withdrawing life support, the attending nurse, social worker, and physician should discuss how to manage the care of patient and survivors alike. Monitoring equipment and intrusive tubes can often be removed. The attending physician should be present, particularly when withdrawal likely means imminent death. The social worker may be involved with family/survivor support. The family, pastor, or others may be present, as the patient would desire, at death.

10. Follow through
The attending physician, nurse, or social worker makes some type of contact with the loved ones after death. Some providers attend funerals as a closure with the family, or, if they were particularly close to the patient and family, speak at memorials. Many physicians phone the spouse or loved one a few days after death, or at least send a note of condolence. This allows lingering questions to be answered, and human caring to be expressed beyond the medical/technical environment.

Comment: I'm sure many providers have developed their own effective style of reaching difficult decisions with patients and families. Our above approach is suggested as an outline to help keep the discussion moving forward in a caring manner which allows all parties to participate in shared decision making.

Asleep at the Wheel

At age 52, Tim had been driving long haul trucks for 20 years and had an excellent driving record with no significant mishaps. He was fairly healthy, but like many men his age, he'd gained 50 pounds over his high school weight with a noted increase in collar and belt size. He'd always snored a bit, but now he was really disrupting his wife's sleep. "Honey!", she'd poke him at night, "You're not breathing, roll over!" She was worried about Tim and irritated that she couldn't sleep listening to him gasp and choke. She'd finally had to move to the sofa to get some needed sleep.

Tim started to have to get up to the bathroom two or three times a night and his throat was as "parched as the Sahara". He would awaken in the morning unrefreshed and often have a headache. His driving scheduled time was regulated for adequate rest time, but he began to feel more sleepy during the day.

On a warm summer day at 2PM on a long stretch of highway, Tim felt overwhelming fatigue. He tried opening the window, turning up the radio volume, singing, and biting his lip. But then he involuntarily closed his eyes - and it was all over. Tim left his side of the road plowing into a minivan. He was brought to our ICU with blunt chest trauma but none of the four persons in the minivan survived.

Tim's chest wall and lungs were bruised so he didn't require a very long stay for observation. The vigilant ICU nurses though made the diagnosis. "Dr. deMaine, this patient has severe sleep apnea. Every time he falls asleep he stops breathing and his oxygen saturation drops from 95% to 60% until he starts breathing again." They estimated this happened at least every minute or so.

We were able to arrange a sleep study at Tim's bedside. The findings, as expected, were dramatic. His breathing slowed or stopped for 10 seconds with a drop in his oxygen levels a remarkable 72 times an hour. With the application of a positive air pressure mask, the apnea completely resolved. When Tim awoke after a night of the CPAP (continuous positive air pressure) he felt refreshed for the first time in years.

Comment: Tim's diagnosis and treatment came too late for the unfortunate souls in the minivan. The delay was emotionally devastating to so many, plus there were economic, legal, and job loss effects. I probably saw my first case of sleep apnea at Philadelphia General Hospital in 1962 when I cared for an obese plethoric patient in heart failure who couldn't stay awake. No one knew what was going on so none of the treatments were helpful.

Finally, in 1982 an Australian doctor, Colin Sullivan, published a paper in the journal Lancet describing the first use of CPAP for sleep apnea. Now sleep labs and CPAP machines are quite common and a new industry in medicine has been born.

But what about driving and industrial accidents. In seeing a number of truck drivers to evaluate for sleep apnea over the years, they would confide to me how that sometimes fell asleep "for seconds" behind the wheel. Indeed frequent micro-naps have been identified by doing brain wave testing on working truck drivers. A sleep impaired driver is as impaired as a drunk driver, but there's no roadside simple test to confirm that impairment.

"Each year, potentially 980 lives could be saved and $11.1 billion in automobile-accident costs could be avoided if drivers who suffer from a disorder called obstructive sleep apnea were successfully treated with continuous positive airway pressure (CPAP), according to a study by researchers at the University of California, San Diego (UCSD) School of Medicine."

Sleepiness has recently been in the news with air traffic controllers found asleep on the job. Falling asleep is not a willful act, but a biologic necessity. When people shift their work hours several times it interferes with their diurnal sleep/wake cycle so they cannot sleep satisfactorily. My take is that these workers should have been evaluated by sleep experts for both shift work disorder and sleep apnea. Perhaps they even had both disorders. Simply firing the workers is no solution. Indeed both the work schedules and the workers themselves deserve more care and attention. We all would be safer!

Your Life Your Choices - Making Your Wishes Known

Alice at 93 knew she was a problem for her sons, but she was not about to leave her beautiful family waterfront home on Lake Washington. She could pay for part time help, shopping and gardening. She loved her privacy and having control of her environment.

She knew that the aortic valve in her heart was very narrow. She had refused a new valve for the last 15 years. But it was now catching up with her. Suddenly one day, she went into acute pulmonary edema. Basically, due to the narrowed outlet valve from her heart the blood backed up into her lungs causing acute shortness of breath. A neighbor rushed her to the ER where she was able to be stabilized without being put on a ventilator. On discharge from the hospital, the doctors met with her three sons and let them know that this scenario of pulmonary edema could recur at any time. Plans needed to be made.

Alice was quite clear that she didn't want CPR, heart shocks or a ventilator. "Boys, I've lived a long life and am ready to kick the bucket when my number's up. I don't want any bells and whistles. Just TLC."

Her sons urged her to have a permanent live in care giver if she wasn't ready for a long term care facility. Or better, to come and live with one of them. As expected she replied, "Listen, this is my life and I get to choose what I want." This left the family which now included three daughters-in-law, 12 grandchildren, and 15 great grandchildren in a quandary. How can she get her wishes and still be safe.

Alice reviewed her Living Will and confirmed her choices for no "heroic" measures. One son was appointed her Durable Power of Attorney with the other two as alternates. But how was this really going to help if 911 was summoned?

They met with Alice's family physician and a social worker to come up with the plan. Alice and her doctor completed and signed a POLST form (Physician's Orders for Life Sustaining Treatment). In Washington State this form is a bright "yucky" green and easy to spot. A set of standing medical orders, this form is honored by Medics, ER's, hospitals, and nursing homes. The POLST form travels with the patient thus essentially putting Alice's wishes in a confirmed medical text.

But what happens if Alice can't breathe and 911 is called again? After contacting the Fire Department and speaking to the Medics, a plan was finalized. She wore a "panic button" around her neck which would summon emergency care. The Fire Department kept a copy of the POLST form in their electronic data base, and arranged for Alice to have a "lock box" on her door. This would allow the Medics to enter her house without breaking the door down. For good measure a copy of the POLST form was given her doctor, the closest ER, and several copies were posted around her house. Alice smiled as she spoke to her family, "Now quit worrying, I may live forever!" They still call and check on Alice twice a day. Alice doesn't think all the fuss is necessary.

Tough At the End

Jim's path had been leading downhill for years, but Jill stuck with him. The drinking had been so much fun and part of their life beginning as sweethearts in college. Jim was a pretty good athlete, in fact the pro baseball scouts were looking at him. Jill was a cheerleader and they were both part of the party scene on campus where weekend blowouts at the frat house were common.

At the start of his senior year Jim was covering second base when a high throw and a low slide combined to give him a hard collision with the runner stealing second. His knee gave way with a crunch effectively ending his baseball career with torn ligaments and cartilage. It was a severe emotional setback for Jim and Jill. They had pictured a life in the major leagues.

After graduation, they married and Jill settled into an art career, but Jim floundered. He started to drink more and more. Despite this, he functioned well in the business arena and progressed into sales management in a fortune 500 company. The drinking though was becoming problematic and Jill was concerned. Their doctor recommended a combined detox and rehab program but Jim resisted. Jill loved him and supported his decision, but couldn't (or wouldn't) keep alcohol out of the house. Finally Jim's boss contacted Jill and said something had to be done, and Jill agreed.

On a Thursday evening after work at his office, Jim was confronted by his boss, Jill, their children, their pastor and Jim's best friend. A suitcase was packed. Jim was initially confused and a bit angry but could see that he was outgunned. He went into a top rehab center with some initial success.

But the patten repeated many times over the years but somehow Jim was able to continue successfully in sales, being hard driving, personable and skilled. Jill cried, nagged, and tried various programs but Jim always relapsed into heaving drinking. The kids pulled away and had problems of their own. They advised Jill to leave their dad but she wouldn't.

Jim's health began to deteriorate as cirrhosis of the liver developed. His muscles began to lose tone, the belly to swell with fluid and the skin to turn a pasty yellow. The first medical crisis occurred when Jim began to have intestinal bleeding. The liver had become so scarred that blood was diverted to engorged veins around the esophagus. These veins ulcerated and broke loose bleeding which was hard to stop, but with transfusions, medications, and vitamins he finally left the hospital after 10 days of treatment.

Jim and Jill tried AA but Jim still relapsed. Jill knew that she was an enabler but still loved and supported him. As Jim's health declined they had a "heart to heart" about life support and living on machines. Jim was also a smoker and knew emphysema was part of his progressive breathing problems. He was clear that he would accept a breathing machine for a short period but did not want to be kept alive indefinitely on a ventilator. He signed a Living Will and Jill had the Power of Attorney for Health Care.

After several more years of worsening health, weight loss, financial strain, and job loss Jim developed a severe pneumonia which required admission to the Intensive Care Unit and life support of a ventilator. After three weeks on the ventilator, tube feeding, antibiotics and careful medical and nursing care, he was finally well enough to be taken off the ventilator. But over the last year his liver had been worsening and he had lost 40 pounds. His strength was poor and breathing very marginal.

Still in the hospital, he was again having increasing breathing problems and the family was called into conference with the doctors. The doctors said that they could put him back of life support, but that he might never get off. He would be moved on a ventilator to a chronic intensive care unit in another facility where they handled long term patients who might (or might not) eventually get off the ventilator.

With the children and Jill there Don made it clear that he did not want to go back on a ventilator and be kept alive on machines. After the children left though and Jill was alone with him Jim whispered, "Honey have I made the right decision? What do you think? Should I go back on the ventilator?"

Jill replied, "Jim, we've talked about this at length in the past. I think you've made the right decision. Your body is so worn out. I would love to keep you here with me, but it would be so painful to watch them keep you alive on machines where you couldn't talk or communicate. It's a pretty horrible existence. So I support your decision.

So Jill had to find strength to find clarity. Even more challenging was dealing with the doubts of the children. "Mom shouldn't we move him to a different hospital? I'm not sure the doctors have done everything."

Jill, with the support of the Hospital Chaplain was able to reassure the children that everything was being done that was humanly possible, "Dad is dying, he wants to be at peace. He's made his decision and let's support it. It's hard and I'm so sad. Please, let's just go sit with your dad."

Comment: The caregivers of very ill patients get so little attention, but they sacrifice so much and are in such a difficult spot. With addiction, the spouse is caught in a vortex of love, being tough, anxiety, loss, and a whole range of conflicting emotions which affect the whole family unit. In the story above Jill might be criticized for not being tough enough while Jim was heavily drinking and destroying himself, but it's unclear whether leaving him would have changed things. Certainly at the end of Jim's life, Jill's love and respect for him helped prevent a nightmarish outcome of long term ventilator support and health crisis - with the final outcome being still being death. I think we all have a fairly healthy tendency to deny death even though it will happen to all of us. William Saroyen said, "Everybody has got to die but I have always believed an exception would be made in my case."

Ce N'est Pas Si Difficle

Case 1: Susie is on a course of antibiotics for a persisting sore throat, the second antibiotic in the past two weeks. Abdominal cramping occurred with persisting diarrhea. The questionably necessary antibiotics were stopped and the diarrhea cleared in a few days. She ended up doing fine.

Case 2: Harry was in the hospital for hip surgery. Antibiotics were given before surgery and for a few days afterward. Explosive diarrhea developed and a stool sample was tested for Clostridium Difficle toxin (the bacteria is hard to culture, hence its name). He was treated with the antibiotic metronidazole and the symptoms resolved. Four extra days in the hospital were required.

Case 3: Bill was diagnosed with Lyme Disease and intensive antibiotics were prescribed. After about two weeks, cramping and diarrhea started. He was given some anti-diarrhea medication but gradually became weak and dehydrated. About three weeks after antibiotics were started he presented with an "acute abdomen" to the hospital and was admitted to the ICU where he was in impending shock. The stool was positive for C Difficle toxin. The colon was dilated and diffusely inflamed. He was not responding to two antibiotics directed at the C Difficle. Something had to be done to save his life. Unfortunately it required a total colectomy (complete removal of the colon) and colostomy to save him.

Case 4: Carol was in the hospital following cancer surgery on the Gynecology Unit. On the third post operative evening she began to have low blood pressure and abdominal cramping with loose stools. At age 79 this frail woman began to gradually go into shock during the night. Her blood pressure hovered around 90 and her temperature was 102. Her urine output was dwindling. Rather than move her to the ICU, a surgical consult was obtained in the morning. An "acute abdomen" of uncertain cause was diagnosed. Later in the day she was taken to surgery. There was no bowel rupture, appendicitis, or dead bowel loops - just diffusely inflamed bowel. She was closed up, sent to the ICU, and within 30 minutes there was diagnosed as C Difficle colitis by an Infectious Disease consultant. She died within three days. A lawsuit ensued.

Case 5: A young doctor looked spiffy in his white doctor's jacket and tie. He saw and touched 12 patients on rounds that morning. He washed his hands only twice, did not don gloves, did not wipe his stethoscope with antiseptic, and had not changed his white coat for two days. He would be horrified to know that MRSA (a virulent staph bacteria), C difficle, and E Coli could be found on his coat, tie, fingers, and even his stethoscope. Four of the twelve patients would have new colonies of these bacteria transmitted to their bodies. One would later develop a secondary serious infection.

Comment: The Hungarian physician Ignaz Semmelweiss was the first physician to prove conclusively that hand-washing prevents hospital transmission of infection. Puerperal Fever (a disseminated strep infection) was a common cause of death in women who had recently given birth. Semmelweiss was not widely believed or accepted during his lifetime and is immortalized in Morton Thompson's book "The Cry and the Covenant". It wasn't until twenty years after the death of Semmelweiss when Pasteur proved that bacteria could cause disease, that hand-washing and sterile technique began to be adopted.

Yet in American hospitals, multiple studies show that simple infection control procedures are often sadly lacking. Have I been guilty myself? You bet! I wore the same white coat for more than a day and didn't routinely wipe down my stethoscope. I saw scrubs (even paper booties) being worn outside the operating room with no guarantee that they would be changed on returning to the OR.

C Difficle is the latest intruder into our hospital wards and now into the community in general. Often it's no big deal. It was simply called "antibiotic associated diarrhea" until C Difficle was identified as the cause. Usually this toxin producing bacterium is suppressed by normal bowel bacteria. When our modern powerful antibiotics kill off these normal bacteria, C Difficle takes over with its potent toxin which severely inflames the bowel. Stopping the antibiotic is commonly the only thing that needs to be done to make C Difficle subside. But once it takes hold in a weakened subject, it can be deadly as noted.

So what's the answer? Awareness of the condition with early intervention makes most cases fairly mild. But why is C Difficle becoming a hospital acquired infection with increasing frequency. The CDC has guidelines for preventing hospital acquired infections and the Joint Commission on Accreditation has pilot projects. But I think poor Semmelweiss (who went insane at age 47 perhaps from frustration and a nervous breakdown) is still wondering. Is anyone really listening? It's not so difficult (ce n'est pas si difficle)!

So how do we as patients and doctors deal with this. Can we tell our doctors, "Please wash your hands before you touch me?" But it's not just the doctors. How about the nurses, aids, housekeeping, etc.? Maureen Dowd gives her take on "Giving Doctors Orders" in the New York Times. Any comments?

The Obecalp Effect

Betty was complaining at an escalating rate. She'd been in her nursing home for four years and wasn't happy. She kept coming up with new symptoms like aching, fatigue, nervous stomach, tingling, dizziness, etc. Her daughter Nancy was getting daily calls from Betty and the staff at the nursing home. Multiple trips to the doctor for diagnostic tests had ensued: blood counts, liver functions, X-Rays, thyroid function, plus many others. All were coming back normal. The Neurologist and Rheumatologist had been unable to come up with anything. Betty was getting a bit forgetful but wanted to be in charge of everything - her finances, health decisions, and daily life.

Nancy didn't know what to do. Mom was being demanding and unreasonable, wanting more medications. An antidepressant had made her sleepy and dizzy. She seemed to be sensitive to all medications yet was demanding something for symptom control, "Honey, they just aren't doing anything for me. They're doing nothing to help me. I'm not sleeping and am aching all over."

Nancy and I were on a Board together and she asked me to see Mom in consultation just to review things. I saw Betty in the office. She was well groomed, talkative and demanding, "Doctor, you just have to do something. I'm suffering and no one pays any attention. I think they're all a bunch of idiots, don't you?"

Betty though was pretty sharp. She could talk current politics, knew common dates and events, and could reason fairly well. The tests didn't show any cancer, inflammatory illness, or metabolic problems. In other words, I couldn't come up with anything either.

I broke the "news" to Nancy who said, "Well, can't you just give her a placebo?" Actually, our formulary at that time (a number of years ago) carried a "drug" called Obecalp. As you might have guessed this is Placebo spelled backwards and was doled out now and then but I had never prescribed it. Nancy begged me to try it for her Mom, "It can't do any harm, why not? I know doctors don't want to deceive patients, but I'm desperate and so's Mom!"

With more than a little reluctance, Betty was given Obecalp for her plethora of symptoms. A few weeks later I got a call from Nancy, "Your're not going to believe this. Mom loves her Obecalp. All is well."

It seems like a combination of laying on of hands, belief, a daughter's love, and the placebo effect all played a part in making Mom comfortable. She died in her sleep a few years later.

Comment: The word placebo comes from Latin meaning "I shall please". The placebo effect is real although not well understood. It exemplifies the mysteries surrounding the mind-body connection. Why does it work about a third of the time for real pain? This type of effect points out why it's important to use placebo controls in medication trials where both the patient and researcher are kept "blinded" as to which subjects are using the study medication or the placebo control.

Today, with more modern transparency and autonomy, it would not be considered ethical to prescribe a placebo for a patient. Do you agree doctors should never do this? According to a study reported by the Wall Street Journal a 2008 survey of nearly 700 internists and rheumatologists published in the British Medical Journal, about half said they prescribe placebos on a regular basis. Do we still often prescribe just to provide hope as the patient leaves the office with something in hand other than reassurance? Actually, many supplements, diets, cold remedies, cough medications and antibiotics are often given without convincing evidence proving that they are useful or necessary at all! The patient walks out of the office with a prescription which may be more harmful than a placebo, which at least doesn't have potential harmful side effects.

Recently Harvard created an institute dedicated wholly to the study of placebos, the Program in Placebo Studies and the Therapeutic Encounter. One of the issues they will study is whether placebos should return to be part of standard medical practice!

It was Sir William Osler, one of the founding fathers of modern medicine who said, "The desire to take medicine is perhaps the greatest feature which distinguishes man from animals."

Incurable Cancer - But Not for Mike

Mike was a runner, outdoors-man, and fitness nut. This was not so much as for health reasons as for "feeling good", but he did hope that it would help him avoid illness. It was worrisome when he started with some belly cramping and noticed some blood streaks in his stools. It took about a month until he could be scheduled for a colonoscopy. The news was shocking. "There's a cancer in the bowel, and you need an abdominal CT scan ASAP." The scan brought even more serious news, "Mike, your cancer has spread to the lymph nodes, the liver, and to the lungs. It's an advanced cancer - State IV."

Jan was with Mike for this conversation. It was like a ringing of disbelief in her ears. "Am I really hearing this? Can it be, he's only 53? Is there a mistake? Will he suffer? Is it terminal and, if so, how long does he have?"

Mike had a degree in mathematics, then a PhD on the way to becoming a college professor. He was analytical. Things needed to make sense. There must be a way to deal with this. Jan was much the same having a graduate degree in engineering which occupied half of her life. The other was the devoted rearing of their seven children, and now their first grandchild. Life seemed to be so good. How could this be happening?

Both Mike and Jan immediately got on their phone to academic physician friends around the country and also scoured the internet sites on colon cancer treatments. The initial findings were pretty grim. The median survival is about two years after diagnosis. But the doctor friends had sources for expert care.

Their GI specialist referred them to Oncology for consultation in Seattle. "Mike and Jan, there's good reason to use chemotherapy to decrease the size of the tumor mass in order to prevent possible bowel obstruction or other complications". Mike agreed and chemo was started. The unfortunate side effects of weakness, nausea and loss of appetite followed. They became discouraged.

One of their physician contacts felt they might benefit from a more holistic approach from a specialized center in the southwest. This holistic center offered tailored intravenous vitamins, nutritional supplements, massage, homeopathy, and tai chi in coordination with the standard chemotherapy treatments.

Multiple CT scans, blood tests, followed at the southwest cancer center. Mike and Jan were reassured that stage IV colon cancer is not a terminal disease with these "specialized tailored cancer treatments."

The tumor regressed but did not resolve, so another referral was made to a west coast cancer surgeon who agreed to try surgery to "debulk" the tumor, remove part of the colon and part of the liver. This surgery was complicated by a blood clot in the left leg. This was further complicated by part of the clot breaking off and traveling to the lungs. This required blood thinners, several days in the hospital and placement of a filter in the inferior vena cava to prevent further clots from traveling to the lungs.

Standard treatment options had pretty much been exhausted yet the tumors were enlarging. A physician friend sent Mike to a research scientist who was aware of drugs "in the pipeline" for cancer treatment, but not available in the USA. Mike and Jan traveled out of the country to receive two drugs, one of which was injected directly into the tumors. These "off-label" treatments caused chills, pain, and weakness, but a transient sense of euphoria.

Mike was keeping tabs on all of this given his background in numbers. His insurance had only partly covered his costs. The trips to the country-wide treatment centers, the off-shore drugs and alternative doctors had cost $160,000. The insurance company had paid an additional $290,000 for all of his cancer treatments, but denied some coverage. This and his co-pays equaled $70,000. Thus the total bills were at about a half a million dollars.

But costs really weren't the issue for Mike and Jan. They had been told at holistic treatment centers that his cancer was curable if only the right treatments could be opted for. The fight, prayers, hopes, and emotional ups and downs continued with Mike, Jan, children and close friends. There were tears, hugs, emails, and letters which brought the comfort to all. Well meaning folks sent them promises of yet other cancer centers, breakthrough treatments, and other alternative treatments. It seemed that there was always some hope out there if only they could get to the right person.

The children had been bewildered but supportive, loving and good caregivers. They were in Mike and Jan's home at the end, which came swiftly. Mike had lost a total of 50 pounds, was jaundiced, and not eating. Hospice had not been involved because it was a situation where full curative attempts were continued until the end.

Mike awoke the final morning in severe pain. His chest was heaving and his breathing hurt. Most of the family was nearby and could be at the bedside at the end. A last minute call to Hospice and the doctor was made. The doctor told them Mike was dying, likely in a matter of hours. Hospice never made it in time. Mike slipped into coma and died 30 minutes later at home with his loved ones holding him.

Comment: I'll leave it up to the reader as to whether Mike got "good care". His loving wife and family were very important in his overall care and support. To me though, the problem was one of a wish for a miracle fed by less than honest messages from some doctors. The family obviously wanted to hear good news and took the promises made at some centers to heart. I don't fault patients wanting second or third opinions, but a quest for cure sometimes knows no bounds. I once had a patient with inoperable cancer go to a third world country for "bloodless surgery." They came back with photographs of the "surgery" and the organs removed. Of course the patient had no scar, but that didn't stop the patient from accepting the miracle produced by the slight-of-hand practitioners. Some miraculous cancer treatments have turned out to be a normal body substance like creatinine. Cortisone, which gives short term euphoria, is also in many off-shore "alternative cures."

Mike's story isn't really unusual. We want the best for ourselves and are willing to pay. Our society expends huge sums on rather futile care. We ration our resources on ability to pay rather than need for care. Is it rational to do so? Did Mike's care really become futile at some point? At what point should his physician friends have lovingly but strongly advised Hospice care? Mike actually lived only 15 months after diagnosis rather than the median of 24 (new chemotherapy and immunotherapy has lengthened the median survival up to 29 months with about 9% of the patients living for 5+ years with stage 4 colon cancer). Did any of the treatments actually speed up his demise? Was his quality of remaining life really benefited? I think Mike's case shows us how hard it is to switch from a curative mindset to a palliative/supportive mindset. It also shows why hospice is called in so late (or not at all) in many situations.

A Fatal Tooth Extraction

Don's wisdom tooth was acting up again. At age 27, he'd been fighting off recurrent pain, gum infections, and crowding of his teeth. Finally his dentist told him it was time to see an oral surgeon. After X-Rays the oral surgeon advised Don to have all four wisdom teeth out at one sitting, so the procedure was carried out a few weeks later. Penicillin tablets were started a day ahead of time and the extractions went pretty smoothly except the one impacted lower tooth was tough to remove.

The following day Don's jaw was pretty swollen, as he expected. He had a low grade fever and took some tylenol plus lots of fluids. On the third day, a Saturday, he wasn't doing so well. The jaw was more swollen and he was having a little trouble swallowing. So he saw the on-call oral surgeon who examined him and doubled his dose of penicillin. Another on call oral surgeon saw him briefly on Sunday. By Monday, a holiday, he was beginning to drool and his voice was squeaky plus his fever was 102 degrees. He was seen by a yet a different oral surgeon, who removed the stitches, switched oral antibiotics and told him to see his regular oral surgeon the next day.

On Tuesday, I was the admitting Critical Care doctor and got a call from the ER MD. "Jim, I've got a patient here brought in by the medics. He saw his oral surgeon today about chest pains and breathing problems and their office called 911 because of a possible heart attack. He has a some bizarre findings. Can you see him right away?"

In the ER, it was obvious that Don was critically ill. His breathing was painful and shallow, his voice high pitched and squeaky, he was perspiring with a temperature of 104, and had a racing pulse of 130. The nurses were busy getting blood cultures, blood gases, starting an IV, and retrieving his chest X-Ray.

I was startled when I felt his neck and upper chest. It was the crackling feel of rice crispies, medically what we call crepitus - air in the tissues. Did he collapse a lung? The mouth revealed a swollen protruding tongue and I couldn't even see the back of his throat. The lungs showed diffuse abnormal crackles and even the heart had a rubbing crunching sound. The chest X-Ray was dramatically abnormal with air shadows in the soft tissues of the neck, shoulders and chest where no air should be. There were also large fluid collections around both lungs, but no evidence of a collapsed lung. The air in the tissues was being produced by gas forming bacteria!

We admitted Don to the ICU where he was seen by both ENT and thoracic surgeons. His breathing was so marginal that he required a ventilator. The neck and chest both needed to be widely opened and drained and a tracheotomy had to be performed. The foul smelling gas producing pus grew out three different species of bacteria common to the mouth plus a few others.

In the next 24 hours Don seemed to rally, but he had further complications of bleeding, dense pneumonia, and heart arrythmias. In 72 hours he was dead leaving behind his devastated wife and child.

Comment: Ludwig's angina was described by Wilhelm Frederick von Ludwig (1790-1865). This unusual ENT critical emergency is fairly rare these days with early intervention and antibiotics, but Don's case was a classic example. The problem was the delay of recognizing the severity of the illness and the critical importance of early intervention. Getting sick on a Friday of a holiday weekend, seeing four different oral surgeons, and unwarranted wishful thinking were all at play in Don's case.

The principles of wide drainage are especially difficult when dealing with the neck/thorax connection in a descending infection. Bilateral opening of the chest, drainage tubes in the neck, stripping off the pericardium (the sack lining the heart) are all recommended. But delay of diagnosis and treatment is the critical feature.

This case came to a lawsuit in which I was deposed as a treating physician - not a pleasant experience. My understanding is that the oral surgeon's partnership broke apart and they settled for the maximum under their insurance policy - small recompense for the loved ones. I mention this case to remind patients to push hard and get second opinions when things aren't going well. But also to remind dental and medical people to be very careful when covering for colleagues. Cases like Don's shouldn't really happen, but they do.

Please, Please Let Me Die

Erik's wife had warned him many times, "Stay off ladders dear, leave it to someone younger." Erik though was a pretty spry 72 years old and had been cleaning the gutters for many years. He had a sturdy 25 foot extension ladder, had years of experience as an athlete, and wasn't about to slow down for no good reason.

It was an unusually bright crisp November day in Seattle, when Erik laid the ladder against the house. He knew that there were both maple and oak leaves in the gutters and that it shouldn't be hard to clean them out. After securing the footing of the ladder and donning rubber gloves he set about tossing the matted leaves toward a yard recycling bin two stories below.

That's about the last thing he remembered other than the crushing chest pain like a mighty force squeezing the life from him. After that it was a daze. He struggled with the restraints, felt like he must pull the tube from his throat, and vaguely recalled Kafka's "Metamorphosis". He was Gregor Samsa awakening as a giant inset trapped lying on his back, struggling with his new existence. Was this real?

Erik's wife, Gerta, had found him unconscious at the foot of the ladder barely breathing. The Medics arrived within two minutes, found Erik to be in ventricular fibrillation and applied CPR, then shocked the heart back into normal rhythm. Circulation returned and Erik's color "pinked up." The medics though were aware of the fall, strapped him safely to a gurney, and rushed him to the trauma center.

Erik woke feeling no pain. In fact he couldn't feel anything. He tried to move his arms and legs, but nothing happened. He saw he Gerta crying at the bedside. All this added to both confusion and anxiety. He still couldn't believe his metamorphosis into a helpless being and wanted to get some answers.

The MRI scan showed that in the fall he had severed his cervical spine at the C1 level. It was explained to him that he was quadriplegic and would likely need to stay on a breathing machine indefinitely. This explanation was gentle at first with some hope attached with a "wait and see" attitude. There was no brain damage because CPR was begun successfully within a few minutes and the heart restarted without delay. It was the fall. Gerta was right, "Why didn't I listen?"

The transition from the ICU to rehabilitation care was gradual. A tracheotomy was done and an intensive program started to get Erik as mobile as possible. Gerta and Erik had been highly successful entrepreneurs in high tech and knew not only how to get things done, but also had the resources to get the best.

A specially equipped wheel chair had a battery powered ventilator to support Erik's breathing. A specially designed breathing tube allowed him to talk in a stutter step way, but it was a big step toward some communication and independence. The electric wheelchair could be controlled by Erik's puffs of air so he became mobile. Gerta had the house remodeled so he could navigate throughout the main floor, out the door, onto a ramp, and go down by the swimming pool (now barricaded)and back. Gerta was expending a huge amount of energy. She wanted Erik to be alive and as happy as possible.

Erik mechanically went though the rehabilitation and body care with some wonderment but progressive discouragement. He hated the daily body massages to prevent sores, tone his muscles, and to try to get his bowels to move. He required a urinary catheter and periodic enemas to handle bodily functions. This was all somewhat tolerable until he began to have recurrent pneumonia. Each time this happened, he would be struggling to breathe and required suctioning from his trachea since he couldn't cough effectively. The first year there were five trips to the ER, two requiring a hospital stay.

In the second year, Erik was having worsening pneumonia with more difficult bacteria and was struggling both physically and emotionally. He let me know that he wanted to talk. Gerta was there when Erik clearly said, "I don't think it's worth it."

Gerta, shocked, said "Erik, you can't mean that. There's so much more that can be done and I can't think of living without you."

Erik backed off, but got me alone one time later. "Look doctor, enough's enough. This isn't living. Do I have to go on this way?"

I asked, "Erik are you down? Are you depressed?"

With more than a touch of scorn, "Wouldn't you be?"

I did have my favorite very practical psychiatrist friend see Erik for assessment. He found that Erik was not clinically depressed and was thinking clearly. He wasn't suicidal per se, but just saw no future in going on.

I asked Erik why he might not want to go on. He said, "First, I'm no longer functioning as a man. I have no chance of recovering. I'm worsening and am a burden to my wife. I'm serious, I should have the right to decide when enough's enough."

Gerta was distraught to hear all of this and pushed Erik to go on. In the third year following the accident, Erik had another severe bout of pneumonia and was in the ICU. We met with Gerta who was struggling, "I just don't want to lose him. He means everything to me."

The social worker spent hours supporting Gerta. Somehow slowly she was able to find the strength to support Erik, "He's been suffering so much and it's so hard to see him that way and to try to make him go on."

At the bedside in the ICU, Erik made it very clear, "I'm ready to meet my maker and finally be a peace."

With further conferencing with Gerta, the social worker, and the ICU nurses we sedated Erik with small doses and removed the ventilator. He died peacefully with Gerta at the bedside.

Comment: A case like Erik's continues to haunt me. Did I do the right thing? Didn't people like Steven Hawking live on ventilators? Didn't Christopher Reeves (Superman) struggle more than Erik before succumbing to a similar injury? Being a doctor at the bedside can thrust almost god-like powers in decision making. What's best? Is there a clear right or wrong? My own take is that there isn't a truly right or wrong answer. I felt my obligation was to support the patient's wishes and at times that means not continuing the artificial means of life support. There's a well known quote in medicine from Dr. Francis Peabody: "The secret in caring for the patient is to care for the patient."

"Don't Ask, Don't Die" Health Ruling

Michael Williams was pretty healthy at age 84 but knew he was slowing down. His hip replacement was working well in his walks around his retirement home. His wife had passed away two years before and his children were helpful but had busy lives of their own.

One evening he attended a course by his local hospice on how to get ready for the inevitable - how to approach end-of-life planning. Michael found this interesting but more than a bit confusing. Did he need two forms or one? What rights was he giving up with a Power of Attorney for Health Care? How could he communicate his wishes to his doctor and children? What would happen if his heart stopped and 911 was called?

The speaker encouraged Michael and others to have a visit with their doctor to discuss what their wishes would be. Michael felt that he had lived a full life and did not want to be kept going with "tubes and shocks". He really feared being attached to a ventilator and being kept alive when he couldn't speak, walk, or relate to his loved ones.

Michael knew that there was some controversy during the Presidential race of 2008 about "Death Panels". He didn't want to government involved in the decision about the way he might die, but he did want to be able to talk things over with his physician and felt that this should be covered like most other office visits.

In December of 2010, Michael read that a regulation had been placed in the voluminous Medicare rules that would allow a Medicare approved visit for an end-of-life discussion with his doctor. So he called early in January of 2011 and was informed that this regulation had been removed and that such a visit would not be covered by Medicare. So Michael waited and hoped the confusion might clear. Was the government telling him not to ask and not to die? Didn't he have a right to the information to direct his own destiny?

Comment: It would appear that Medicare's Dr. Donald Berwick was over-ruled by the politicians in the Medicare ruling reversal. The reason isn't that obscure. The Obama advisers are afraid that the "Death Panel" accusations might give too much ammunition to opponents of the recently passed Health Care Reform Act. Although there may be political reasons for denying Medicare coverage for end-of-life planning discussions with one's physician, good medicine dictates that a patient's autonomy is controverted when informed consent is bypassed. Would Michael have a hip replacement without knowing the benefits and burdens of the procedure? Likewise should he have CPR, feeding tubes, and other interventions without the important discussions with his doctor?

My hope is that over time this apparent "Don't Ask, Don't Die" ruling will be overturned and we will return to having Medicare acting more in the patient's and society's best interests. Ironically, the government is interfering with good medical practice in disallowing Medicare coverage for end-of-life discussions. It has now been shown in several studies that advance planning improves the patient's quality of life and that their wishes about life support are respected. Also, interestingly, advance planning can not only save patients and families unnecessary pain and suffering, it can generate large cost savings for Medicare. The argument that advance planning is a slippery slope to euthanasia is both facetious and politically disingenuous.