Premature End of Life Care

I had returned to the Hospital following my longest-ever vacation, four weeks in Portugal and Southern Spain and was renewing my “management by walking around” skills when I dropped by our Medical Intensive Care Unit (MICU).  There was a buzz in the air, a friend and colleague of mine had just signed-off as the physician of an 87 year-old woman who was intubated and had been on a ventilator for several weeks. 

This was a transitional time in the history of critical-care medicine.  We were moving from open to closed units.  At that time general internists were allowed to admit and care for their own patients with or without consultation with a pulmonologist or cardiologist. Inpatient medicine has evolved, and most MICU’s are now closed, and critical care specialists manage nearly all MICU patients. 

 The day of my visit was during the good-old days of the open unit.  My colleague caring for this elderly woman was an excellent general internist and a truly humanistic individual.  He had been confronted with a seemingly insoluble end-of-life crisis.  He, along with concerned medical and nursing clinicians, believed that her endotracheal tube should be removed so that she could die.  She was unresponsive and a feeding tube, intravenous lines and a bladder catheter were also supporting her.

When I learned that she had no physician, I volunteered to take over her care.  In my formal medical training in the 1960’s there were no critical care units.  Unstable patients were cared for in the usual four-bed rooms.  Curtains separated the beds, the respirators were primitive, but the nurses were the best, although not formally trained in critical care.

Standards have evolved over the last quarter-century:  the physical units changed and now patients have private rooms; there is one-on-one care by specialty trained and certified nurses; the physicians are Board Certified in critical care; there are clinical pharmacists who help manage complex regimens of medications; and respiratory therapists are on site. 

Importantly, healthcare ethics has evolved along with critical care, and the clinicians are familiar with ethical principles.  If necessary, expert consultation is available.  Families are encouraged to come to the bedside and to talk with the nurses and physicians. When I volunteered to help that day, a quarter of a century ago, critical care had impressively evolved, but most certainly not as far as today.

This woman posed an ethical dilemma.  The hospital staff agreed that the current care that was sustaining her life was futile.  Her three children disagreed and wished to continue the intubation, ventilation, nutrition and hydration.  The major family decision-maker was a physician daughter, an academic pediatrician, who lived an inconvenient distance from Portland.  The son was a postal worker and the other daughter was the caregiver for the mother.  Their home was in a pleasant middle-class neighborhood.  End of life decisions had been appropriately delegated to her family, as she had been unresponsive since her admission for pneumonia weeks earlier. 

That was the stage set as I opened the sliding glass door to her room.  At her bedside I confirmed her physical exam, and then I attempted to arouse her:  “Mrs. X wake up…open your eyes”.  There was no response.  I then took a hearing assistance device that resembles an old-fashioned hearing aid from the pocket of my starched white coat, placed the buds in her ears, hooked up the leads and turned it on. 

Again I asked, “open your eyes Mrs. X”, and this time she did.  She looked directly up at me, and I asked her what she wanted.  She bent her right elbow and put her hand to the endotracheal tube and motioned it forward.  It was obvious that she wanted the tube removed.  After consultation with the nursing staff, all agreed that she clearly had the capacity to make decisions for her self.  We did as she directed. 

After we removed the tube she was certifiably awake.  She went home and lived for many months with the care of her daughter and son.

Deafness is a major problem in the care of the elderly.  I have helped manage more than one patient who had been thought demented but instead were extremely hard of hearing, and who, like our seemingly comatose patient, had simply tuned-out of life. 

What Did You Do? Additional "Interesting" Patients

Each Tuesday morning I am honored to talk with patients at their bedside.  I am advantaged to see them after they have been stabilized and are thinking more clearly with less anxiety than immediately after the crises of their admission, and I am not obligated to take a complete history or do a complete exam; I may ask them non-urgent and seemingly irrelevant questions.  My go-to query is to ask what they did for a living, and if a work history seems unlikely, to ask them what they have done with their life.
Nearly all of the patients I see were born shortly before or during the post World War baby boom and are now in their seventies, most often they are retired.  Younger people on our wards often suffer from serious mental illness that has led them to practice the serious use of tobacco, alcohol or more dangerous street drugs.  
Over the years I have made brief note of a few of their memorable answers:

From a playful 70 year-old man, “I made weapons of mass destruction.”  Parenthetically this response came during the half truths about “weapons of mass destruction” formulated and spread by our Nation’s deadly duo, Cheney and Rumsfeld, concerning the nature and the threat of Sadem Hussein’s arsenal.  The patient had worked in Albany, Oregon, at the Wah Chang plant that isolated purified zirconium from beach sand.  Zirconium is used to clad the reactors for our nuclear submarines, indeed a weapon of mass destruction.

A wrinkled eighty-three year-old woman, who had been admitted to the hospital to help with her symptoms of tobacco-related lung disease, was proud that she owned and operated a honky-tonk bar on the outskirts of St Helens, a community that, with tongue in cheek, I refer to as the Appalachia of Oregon.  There on a daily basis she tends the bar. 

An eighty-two year-old Japanese-American woman who remembered that as a teenager she had walked from her family’s village into the rubble of bombed-out Nagasaki two weeks after it had been the target of our second atomic attack.  She apparently had suffered no ill effects.

An eighty-two year-old woman was admitted for acute pyelonephritis and proudly reported that she had smoked marijuana since the mid-1960’s when she had also raised enough for her children.

A frail elderly Jew who had been imprisoned for nine years in a Siberian gulag, ironically he had been arrested almost immediately after the Russians had liberated him from a Nazi concentration camp.

These are stories from the people, the patients, which have strengthened my advocacy for teaching at the bedside.  These stories have allowed the house staff, students and me to recognize additional dimensions of the humanity of those for whom they care.

Gloves---a Touching Story

Gloves---a Touching Story

I have become dedicated to bedside teaching, and by that I mean at the bedside—not outside the patient’s room or at the nursing station or in a room with a white board.  At the bedside, next to patient, hearing the patient’s story and examining him or her often open undiscovered and unexpected insights.

Faith Fitzgerald, professor of medicine at University of California at Davis, wrote of such a bedside experience.  Planning for attending rounds she was told by her house staff that they had “no interesting patients”.  Mildly protesting,  I am sure, the team departed for the bedside breaking through the usual centripetal forces.  They went to the room of an “uninteresting woman” who they discovered was a survivor of the sinking of the Titanic!  The following narrative is not as dramatic but is lovingly instructive.

I am now retired and have the privilege of making teaching rounds each Tuesday morning with an inpatient team:  a teaching hospitalist, a senior resident, a first-year resident, and two medical students.  This Tuesday the group was mobilized reluctantly, as they had “no interesting patients”, and we went to beside of a frail elderly woman recently admitted from a long-term care facility.  She was said to be demented she was immobile, sitting upright in her bed she reeked from the stool in her incontinence pad, her head lolled to the side and her toothless mouth was agape.  Her eyes followed but she did not respond to questions or commands.

We discussed the metabolic derangements and the resulting delirium that had brought her to us.  We examined her head, neck, chest, legs and fingernails.  We discovered nothing unknown.  We returned the bed to a low position and dimmed the overhead lights, and as we moved toward the door, she called us back.  She lifted her head, she opened her eyes, and with her dry tongue spoke “no gloves—no gloves”.  I returned to her side and without gloves I touched her arm, and she said, “No gloves, yes I want to be touched”.

Appropriate touching is important to humans, and even more so for the vulnerable and needy.  It appears that it has become standard to put on thin purple gloves to examine all patients at the bedside.  This seems to have been progressively ongoing for the last thirty years, prompted by the HIV/AIDS epidemic and now MRSA and C. difficle.  Before the mid 1980’s we had gloved on occasion for syphilis, viral hepatitis, various skin infections, and of course the rectal exam.  Now clinicians routinely glove with any expectation of touching the patient, including the physical examination.

Human touch is important.  The literature, old and new, medical and non-medical, has encouraged appropriate touching.  As an example, the late Lewis Thomas, widely read essayist, physician and investigator, wrote in 1983 “…the oldest and most effective act of doctors, the touching.  Some people don’t like being handled by others, but not, almost never, sick people.  They need being touched...”.  This is the lesson relearned from this “uninteresting woman”.



2/6/2017

Priest-Induced PTSD

It was a Sunday summer twilight, just the time to switch on a few lamps, when she asked that we leave the living room couch, which had been our home for hours and days.  Her parents were away, and we had been kissing and fondling--only above the waist.  Her parents were often away, and we often had the house to ourselves for kissing and fondling.
We were young, sixteen and fifteen.  We had been a couple for two years.  Our lovemaking was intense but limited in scope.  It was 1956 and society was still a short decade away from the Sexual Revolution.  Two years before, she had been the white-dressed May Queen of her Catholic parish. She actually had led the dance around the May Pole in the grade school playground. She was the youngest in an impressively Roman Catholic family.  Of the nine children, two were nuns and one a priest.  She was pretty, fresh and clean, my virginal American Dream.
  
I had been raised in this same small town, and my family attended the Baptist Church.  Sex was never actually mentioned in the Church, but you could tell from the people of authority there that they thoroughly disapproved of it and personally did not have much to do with it.  They did publically disapprove of dancing, suggesting that it would lead somewhere.  My mother implicitly endorsed the Baptist manifesto.  She inserted into my mind a series of aphorisms “sex was dirty”, “… was “disrespectful to women”, “would you want someone to do that to your sister?”  A hit song of this period was Love and Marriage with the refrain:  “you can’t have one without the other.”  Yes, I really believed those lyrics---I was a Baptist.

Back in the twilight, while turning on the lights she took my hand and said that she wanted us to go into the bedroom so that the neighbors could not see us.  I agreed without hesitation but with eager anticipation.  Of what, I was not entirely sure. 

The bedroom was dim and cool.  The bed was large.  I took off my shirt and she her blouse and previously unfastened bra.  She pushed me onto the bed and onto my back.  She perched on me and undid my belt and started to unzip my Levis.  

At that very moment all hell broke loose. There was a clap of thunder.   Both the Baptist and Roman Catholic Gods had found us.  The knocking on the front door was thunderous pounding. Voices screamed for her to unlock and open the door.  A face appeared at the bedroom window. 

She blurted out the obvious, we MUST get out.  She pushed me through a narrow hallway to the kitchen toward the back door.  Simultaneously she was dressing as I tucked in my shirt.   And then they were on us, her mother and her brother, Father Tom.  He slammed her back into the wall while getting into my face yelling, “… get out and if you ever come back I will send you so far up the river you will never come back.” Over and over I shouted at him that I cared for her, and that seemed to inflame him further. I retreated, hitting the road home, shaken and sick.  My mother and the Baptist Church were right.  Sex is so wrong. 

A close friend of mine lived across the street from her family, and Father Tom interrogated him about my character.  Perhaps his endorsement kept Father Tom from pursuing me further.  

She was grounded for the spring and summer.  I was only able to glimpse her at the girls’ softball games that were played across the street from her home.  Uncharacteristically I went to many of these games that summer.

With the school year, we resumed dating.  We were delighted to be with one another again.  Soon though, the fall and winter turned weird.  On the way to the first school dance of the year, she came out the door of her home, gripped my hand and pulled me to my family sedan, the 1954 lime green Plymouth Savoy.  She told me to drive away quickly, and I did.  She slumped to the floor, and curled into a fetal position.  She shrieked, “Help me” over and over again.  I quickly found a quiet side street and parked the Plymouth.  As I coaxed her back into the seat she calmed.  She cried, she sobbed, but she could not explain.  She quietly calmed but ignored my questions.

We went on to the dance in the school cafeteria.  We danced holding each other close.  After the dance we found our favorite “parking place”.  We kissed until our lips were sore, and then I took her home.  

The next Friday we went to the dance after the football game.  It was a delight until during a slow dance with a tight embrace her head went back, and she became limp.  I carried her off the floor.  The dim lights prevented others from seeing us.  After some time on the sidelines she recovered but would not talk about it.  We left soon and on the way to the car she murmured “no, no!” and again she slumped to the ground.  Struggling, we made it into the car and onto the front seat.  
These episodes continued during the fall.  In the time between the spells and spasms, she was more or less her old loving self.  And yet, she was not herself.  Gone was the special look in the eyes that love brings.  Gone was the softness of her embrace, gone her appetite for chaste teenage lust.  As before, I didn’t want much but I needed authentic and reciprocal love.  That was gone. 
As the fall turned into winter the behavioral episodes continued.  After yet another dance, I drove to an alley, and we sat with the snow falling around us on the car windows.  I broke-up with her. 
  
I have thought of her a great deal over the last 60 years.  We have learned a large amount about the Post-Traumatic Stress Disorder (PTSD) during this time.  While I don’t know explicitly what happened between her and Father Tom, from my few seconds with him, it is my opinion that she was emotionally abused and perhaps physically traumatized.

When she returned to me that fall I think that she manifested many of the hallmarks of PTSD.    She displayed severe emotional distress and physical reactions when circumstances reminded her of that summer evening, i.e., being close to me.  She avoided talking about what happened after I left and what he did to her, i.e., the traumatic event.  She seemed to have become negative in her thinking and mood.   She seemed unable to experience the positive emotions that had once been her, and in a relative way she seemed emotionally numb.  She was always on guard for danger and was easily startled.  In aggregate, these behaviors now suggest to me that she suffered from PTSD.

Nudging my memories, trying to honestly review our story, has widened my scope of reflections of PTSD.  As stories are told, it is clear that PTSD does not always mean a shell-shocked soldier; it may affect a naïve teenage girl.  The trauma may not come from shells and mortars of battle, but from a sanctimonious brother-priest. 

A Tale of Three Young Men on a Spring Afternoon

It was one of those rare spring days in the Pacific Northwest that really was like spring, fair skies, warm breezes, and the sun.  It was also a long weekend on-call for me and two fellow medical residents at the Seattle Veterans’ Administration Hospital.  We were inside looking out. 

At that time, nine of the University of Washington second-year residents staffed the Hospital’s Medical Services.  The leader of our training program was Dr Robert Petersdorf, one of the world’s premier teaching physicians.  We considered ourselves to be among the elite.  The patients and nurses did not share that idea.

We each were assigned a service of about 15 patients, and we worked alone, without interns or medical students.  We each had an attending physician who we saw infrequently, usually three times each week for sit down teaching rounds, usually a mini-lecture on a subject within their expertise.  They were subspecialists on the faculty to do research.

During the week we were on long-call every third day for about 33 hours, and then every third weekend for two nights and two days. 

That spring weekend the three of us working on call were all white guys in our late twenties.  There were no women or people of color in the Program.  Our age and skin color is where our similarity ended.  Fred was a devout Adventist from Southern California.  He came from wealth and brought some with him.  He lived in a real house and drove a nice car.  He was perceived to be really smart, but perhaps rigid, in our parlance a tight-ass.  Mac to the contrary was an irreverent iconoclast.  He was forced to wear a necktie, as we all were, but he never really tied his properly.   I suspect his family was wealthy as well, but he did not bring it with him!  He had attended a prep school and an Eastern college and an Ivy League medical school.  I was solidly from Iowa.  There was no chance of bringing wealth with me to Seattle.  My working wife and I shared a small apartment with our toddler daughter.  She drove me to work in our Volkswagen Beetle and picked me up after call.  But, enough whining, I was a bystander to this story.

Setting the stage, most Veterans Hospitals at that time had only a few private and two-bed rooms, and most beds were in rooms of four to eight.  That afternoon, Fred, Mac and I each had a patient in the same four-bed room.  All of the patients were sick, and today would be in an intensive care unit, or at least on a nursing unit surrounded by a team of nurses, respiratory therapists, phlebotomists and others.  These patients had only us—one-on-one. 

Mac admitted a cirrhotic man with a belly full of fluid, and after inserting a large trocar and needle, he had removed bottle after bottle of clear pale-yellow fluid. Working alone, he placed the bottles on the tiled windowsills. 

The hospital rooms were cleanly tiled:  floor, lower walls and window frames.  The window ledges where Mac had placed the bottles were generously wide.  The bottles were clearly labeled, but only as vacuum bottles.  They were designed to help remove fluid from body cavities

. 

Shortly after Mac had removed the fluid from his patient, Fred was called to the bedside of his patient, who had been found by the nurses to have the sudden onset of confusion and a dangerously low blood pressure.  Suspecting that the patient had an infection with severe sepsis and that shock was at hand, Fred decided to give fluids intravenously.  He needed plasma or serum albumin immediately and saw the bottles on the windowsill.  They looked like serum albumin.  He gave them, first one, and then a second to his patient. 

Either Mac or I returned to the room to find the peritoneal fluid disappearing into the circulation of Fred’s patient.  Mac howled with indignation, and frankly, also with delight.  The dazzlingly self-assured Fred had made a mistake, a medical error.  I stayed back against the tiled wall:  thinking no harm—no foul. 

This was a classic medical error—it was egregious.  However, it went unreported.  Mac and I thought that it was hilarious. Fred was completely humiliated.  Mac was at fault, but Fred was not about to report him.

 

The error was both individual and systematic.  Who let these guys work without supervision?

Problematic Effects of a Pacifying Potion

For years I was a physician to members of his family and had known this 59-year-old executive.  I was surprised when he was admitted to our hospital for palpitations and weakness.  

I knew that he used to drink alcohol socially, and when that became a problem, he had quit sixteen years ago.  I was aware that he took pride in his health.  He was proud that he ate organic and natural foods.  At admission we learned that he consumed nearly a quart of yogurt each day, and also each day drank ten to twenty cups of herbal teas.

His personal physician had seen him regularly for routine health matters.  He prescribed a medication for anxiety.  He had found that his blood pressure was high, and it proved to be somewhat difficult to treat. Three drugs were used in a step-wide fashion during the next 18 months. 

Now, because of the palpitations and weakness, he had gone to the emergency room of our hospital where his serum potassium was found to be 2.2 millimoles per liter.  Such low levels of potassium (hypokalemia) are dangerous and can lead to ventricular fibrillation and death.  He was admitted to the hospital for close observation and treatment. 

Potassium was administered intravenously and his serum potassium level increased somewhat to 2.8 millmoles.  His palpitations disappeared.

His hypokalemia most certainly was the cause of his symptoms, but what was causing his potassium to be so low? As a thiazide had recently been added to his blood pressure medications, the hospital’s clinicians briefly considered that this might be the culprit.  However, he was on an appropriately low dose of the thiazide that ordinarily would not cause this level of hypokalemia. 

Over the next few days he remained markedly hypokalemic despite additional potassium.  Multiple physicians examined him for other conditions that might cause hypokalemia, particularly those which cause hypertension too.

Hyperaldosteronism was one such diagnostic hypothesis.  Although not common, this can be a serious disease.  Hyperaldosteronism is the over production of a salt retaining hormone, aldosterone, which may occur from an adrenal gland tumor or from severe narrowing of an artery to the kidney, i.e., renovascular disease.  Other less common causes of hypokalemia and hypertension were also considered, some of them seemingly benign, such as excessive amounts of licorice in the diet, but the patient denied a fondness for licorice.

After extensive testing, neither hyperaldosteronism nor any other cause was found.  He was a diagnostic puzzle, but, he felt well, and he was sent home when his potassium returned to normal. 

Shortly after discharge, at the request of his in-patient internist, he brought in his herbal teas.  In each licorice root was a major ingredient!  The mystery was solved.

As you recall, he had mentioned at the time of his admission to the hospital that he had been drinking ten to twenty cups of these teas per day for many months.   These were taken to calm his nerves after tense days at the office. Even though they were intrigued by the extraordinary amount of herbal teas that he drank each day, his clinicians were unaware that some herbal teas contain licorice.  He had denied licorice use. 

He stopped drinking the teas.  He was seen again in the clinic thirty days after discharge and he said he felt terrific.  His blood pressure was 104/64 and his serum potassium was 5.1 millimoles per liter.  Antihypertensive medications were reduced and eventually discontinued. 

Eating licorice is an uncommon cause of the syndrome of hypertension and hypokalemia. In the past few decades with the virtual disappearance in the United State of candy that contains true licorice root; it has virtually disappeared.   However, it is important to note that other sources of true licorice root are still available.  These sources, including herbal teas, should be considered in patients with unexplained hypertension and hypokalemia.  

My Mother’s Last Weeks

Madolyn, my 98 year-old mother had been treated for her indolent B-cell lymphoma for about four years, first with neck and mediastinal irradiation and then retuximab.  

To digress from the central story, we were all together for Christmas 2009 in our home on the Oregon Coast when Mom confided to my wife, Beth, that her eyes had become increasingly more swollen each morning.  She now could not see when she awoke.  After she had been up for a few hours the swelling disappeared.  I found that she had prominent lymph nodes in her neck and above the collar bones.  It seemed likely that the mediastinum was similarly involved, and that she had a Superior Vena Cava Syndrome.  This is caused by lymph nodes compressing the veins  in the center of the chest.  A CT scan confirmed this.  She had irradiation and retuximab and the nodes grew smaller.  The neck and facial swelling subsided.

Then all went well until about four years later, when in August of 2013 she noted an increasing mass of lymph nodes in her right upper neck and a mass in the back of her throat on the same side.  She reluctantly consented to another round of irradiation.  The therapist carefully constructed a hard plastic mask that fit over her face and neck.  The x-ray beam was then directed upward from the front of right side of her neck to the mass on her palate. The irradiation was was finished in early October.  

Adamant that she would accept no more treatment, she signed up for hospice care in early November.  In mid-November she complained of fatigue, and she decreased her activities.  On November 16^th she did not get up from bed and had become very somnolent.  She was worse on Monday, and Beth drove to the Coast to help care for her.  She was bedfast and unresponsive.  Beth activated hospice care and a team worked with the family.

   

We had our Thanksgiving meal at the Coast, and Mom was in her hospital bed near us as we ate.  She was unresponsive.

  In early December although still bedfast, she responded to voices and was able to identify us.  She asked “what happened?”.  I had to tell her that I did not know.  She then lapsed back into sleep.  She awoke for sips of water, coffee and custard.  Her somnolence continued and by early February she was unable to take any food or nutrition.  She died February 6^th.

A few weeks later I was making hospital teaching rounds, and an eighty-eight year-old woman was discussed.  She had had total cranial irradiation for lymphomatous meningitis.  Approximately a month after her treatment ended she became somnolent and then unresponsive.  She was now recovering. Her oncologist discussed her case with us and confided that he thought that she had had the syndrome of post-irradiation encephalopathy or somnolence.  My colleagues with me on rounds had never heard of this syndrome, and I had not either.

Post brain-irradiation encephalopathy is more commonly seen in children because they more often than adults get brain irradiation for their leukemias.  It comes on suddenly four to six weeks after radiation therapy.  After a variable time, most  patients recover.   My mother was frail and her prolonged coma made her more frail.  It was not possible for her to recover.