Hitting Home

When Illness Strikes a Family Member

by Dr. Mayer Horensten

The telephone call sounded ominous; my eighty-three year old mother had been transferred to the I.C.U. with profound anemia and suspected aspiration pneumonia. Her attending physician's voice underscored his concern. Without hesitation I made reservations to fly back east.

Although she had been as alert as ever, it had become apparent over the last few years that old age was catching up. It frightened me to think that this might be the dreaded time that I knew was approaching. My father had died six years earlier and it was painful to think that my link with my parents' generation with all of its old world charm and simplicity might be ending.

Mom had always been there whether to comfort me as a child with a strep throat or as a struggling medical student. When athletes on television shouted "Hi, Mom," I repeated the greeting myself. She had provided me with a mental security blanket that was very comfortable, reassuring and loving.

Prior to her hospitalization, my mother, Trixie, as we called her after the character in the "Honeymooners," had been anorectic. My sister was concerned that Trixie's doctors were not doing very much to find out why. I had heard that these doctors were board certified so I assured my sister that there was no need for alarm. Despite my years of practice as an internist-nephrologist, my sister never disguised her suspicions and doubts about most physicians; to me, once burned, always cautious was her credo. She had no appreciation for the hard work, severe stress and demands that family members could place on the most caring physician. I suppose at times she reminded me of the relatives of some patients I had met.

The next evening when I saw my mother, I was shocked and stunned by her emaciated and cachectic appearance; her watch was loose at the wrist and her facial features shrunken. It was tough not breaking down and crying in front of her and my family, but I didn't want Trixie to be frightened or lose hope.

When her attending physician reviewed her case for me, he explained that he had started her on antibiotics for suspected aspiration pneumonia, secondary to a Dobhoff tube, and ordered a hematologist to evaluate her anemia. He attributed her anorexia and weight loss to congestive heart failure. Chest x-rays showed a mild right-sided pleural effusion and yet her echocardiogram showed a respectable ejection fraction. Of course hyponatremia and anorexia are associated with congestive heart failure, but why the absence of any peripheral edema? There was, to my relief, no evidence of pericardial effusion. The pulmonologist on the case added little. Was a piece of the puzzle missing or was I no longer the objective internist I had been trained to be?

The shoe was now on the other foot. I was the concerned family member and no longer the omniscient attending physician. Every effort was made to ask questions and offer suggestions in the most diplomatic and respectful manner; it was not my intention to usurp then attending's control of the case.

As the days passed and I sat at her bedside, I could clearly see the presence or absence of love as the nurses, ancillary staff and physicians visited. When they gave love, they radiated and in response, so did Trixie. It made me tingle to watch.

Mom was not improving. The explanations for the lack of progress were obscure. Continuity of care was fragmented as demonstrated during a three day period when three different attending saw her without any holistic approach to her care.

My sister's anxiety was growing. She informed me that prior to this hospitalization, Trixie had a two week bout of diarrhea that her attending had treated only with Lomotil®. Only after hospitalization was a severe fecal impaction removed!

Doubts were creeping into my mind and I felt uncomfortable with the tentative diagnosis. Grasping for the possibility of finding some medically treatable condition, I suggested an endocrinological consultation. It was done but a diagnosis of hypothyroidism was at best tenuous. What irritated me was the fact that my mother was dying and the attending didn't seem to have the enthusiasm and interest to be more aggressive with her treatment. Why hadn't they considered the endocrinology consult? Why were they just going through the motions?

The need to change attending physicians became apparent when I discovered that Trixie was receiving half normal saline at a fairly rapid rate when her serum sodium was in the low 100's.

When an internist recommended by a friend and fellow physician agreed to assume Mom's care, I explained that I was mindful of her age, frail condition and poor prognosis, but that my sister and I only wished that she receive every reasonable opportunity to get well. Her spirit and cooperation were holding; she was not ready to die.

Much to our chagrin he did his job. A cat scan of the chest, thoracentesis of the right pleural effusion and bronchoscopy confirmed poorly differentiated adenocarcinoma of the lung. The pieces now fit. Congestive heart failure had not been the major problem!

There were mixed feelings of relief, dismay and anger for me. Relief because I knew Trixie had had the chance that a medically treatable disease might be found; dismay because her death was at best weeks away; and lastly, anger because her care had been inadequate and at times even incompetent.

My sister was incensed. She was prepared to initiate a lawsuit. I agreed because somehow Trixie's former attending physician must be impressed with the fact that the kind of care they had provided was unacceptable.

Discussions with a reputable attorney, however, resulted in no legal recourse.

Three weeks later when Trixie died, the bitterness and anguish remained. An earlier diagnosis would not have changed her prognosis or cheated death of another victim, but it would have been comforting to the family to have known that everything reasonable had been done by empathetic and competent physicians.

Despite my presence as a physician and son, her original attending physicians had failed. A patient should not have to have a medical professional in the immediate family to ensure quality care. How many other patients received or were receiving care and treatment below the accepted standards?

It shocked me that this happened in a large metropolitan hospital which is affiliated with a prominent medical school. What does it say for quality assurance? Would peer review pick up the subtle errors in judgment and treatment? I doubt it!

As I re-career after thirty-five years in clinical medicine, I am still disillusioned and saddened by this experience. To remain an empathetic and dedicated physician in today's world of DRG's, litigation and decreasing autonomy, prestige and income is an ever increasing challenge.

It's not that difficult to analyze items such as appropriateness of admission, length of stay and cost per day. What is difficult is the major issue of quality care. Better guidelines and surveillance must be established to address this weakening link of health care in our country.

Our aging population will present many more "Trixies" to the hospitals in the years ahead. I sincerely hope that their physicians will be as competent and well trained as is possible. I would hope that they would wholeheartedly strive to give each patient the love and dedication that they would want their own loved ones to receive. To do less is grievous and lamentable.

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