When A Daughter Dies

Not too long ago, I wrote about my sister Linda, who passed away this summer.

Nobody could love a daughter more than my father Michael loved Linda. 

My father (who is a doctor) was realistic from the start about what modern medicine might be able to do to save his precious daughter from cancer.  Even with those low expectations, he was shocked at how impotent — and actually counterproductive — her interactions with the medical system turned out to be.

Here, in his own words, is my father’s poignant account of my sister’s experience with medical care.

————

 “Daddy, I am going to tell you something you are not going to want to hear.  The MRI showed that I have two brain tumors.”  This verbal catastrophe is the telephone message I (an elderly practicing gastroenterologist) received from my previously healthy  50 year-old daughter,  who had just undergone a brain MRI for unsteady gait of one week’s duration.   A worrier and a pessimist, I feared  the MRI might show multiple sclerosis.  Metastatic brain tumors were outside even my fertile imagination.  The date is August 9, 2012.  

For unknown reasons, my daughter is transferred via ambulance to a local metropolitan hospital. In a one hour period, the MRI result has converted my daughter into an ambulance case and me into a very nervous, distressed father.  A total body C-T exam shows additional tumors in the neck, lungs, and adrenal glands with possible involvement of the liver.  A relationship is formed with a local oncologist, the neck mass is biopsied, and my daughter is discharged to await biopsy results.  Four days later, the biopsy is read as non-small cell carcinoma of the lung.  We are told that in young women who have never smoked this tumor occasionally may have a favorable genotype that renders it susceptible to chemotherapy.  An internet check indicates that the favorable genotype is rare and “susceptible” — one of those relative terms employed in oncology.   

A  Greek aphorism warns, “Call no man happy until he is dead.”  A calamity that I hoped/presumed never would occur now seems likely  –  I am going to outlive one of my children.  I am very unhappy, and my wife asks if we will ever be happy again. 

My daughter needs local treatment of the brain tumors and systemic chemotherapy.  She and her husband opt for care at a distant referral center.  She promptly is seen by a neuro-oncologist at the referral  center, and a PET scan confirms the widespread nature of the tumor.  The following day gamma knife therapy is performed on the two major brain tumors, in the cerebellum and the frontal lobe.   Nine days after the brain lesions were first observed, she leaves the referral center ostensibly  in her usual good state of health (dexamethasone relieved the unsteady gait).   Temporarily, I begin to eat and sleep once again.  My daughter awaits a return visit to the referral center to discuss chemotherapy with a pulmonary-oncologist.  While I text or talk with her daily, I am completely unprepared for what I see when we meet five days later.  She now looks ill.   She is hoarse and short of breath with minimal exertion, and the neck mass seemingly has doubled in size.  At this moment, the referral center notifies us that re-staining of the tumor indicates that it is of thyroid rather than lung origin.  The appointment with the pulmonary-oncologist is replaced by a visit with an endocrine-oncologist who recommends an adrenal biopsy to determine the differentiation of the metastatic tumor. Independent of the tissue of origin, it is apparent that a genetically altered monster is running rampant in my daughter’s body.  

No one is told that my daughter is ill other than her two siblings and my division director (to explain my absences) and an old friend who covers for me as a ward attending.  This secrecy is attributable to my paranoia concerning public discussion of family health problems as well as the knowledge that my lacrimal glands are out of control.  I know I will cry if anyone asks me about my daughter.  An elderly doctor should not walk the halls of a hospital with tears streaming down his cheeks.   In contrast, my wonderful, brilliant daughter is a model of self-control.   No tears, no complaints.   I suspect she has accepted the probable lethal outcome of her tumor and tolerates all the medical gyrations whirling about her to please her husband, son, and father.   Is this the result of information from the internet or have I non-verbally communicated my pessimism to her?

Six days after leaving the referral center in superficially good health, she returns in a wheel chair, short of breath at rest, and speaking in a whisper.   Her oxygen saturation is 90 percent on room air.  Since she has no stridor, the breathing problem apparently reflects tumor invasion of the lungs.   Following the adrenal biopsy, her husband returns from  the post- procedure observation room with the information that she has a rapid pulse.  Until now I have remained the passive observer, but now am moved to intervene.  I feel her pulse and her heart rate of about 145 is obviously irregular.  I tell the nurse that I suspect atrial fibrillation and suggest that an EKG be obtained and the rapid intravenous infusion of saline be discontinued. To obtain an EKG, the Rapid Response Team must be called.  This Team arrives, an EKG shows atrial fibrillation, and her rate is slowed with beta and calcium channel blockers.   Her blood oxygen saturation now is only 86 percent on 5 liters of oxygen.  Her pulmonary function has deteriorated over eight hours.  Can the monster tumor be expanding at this rate?  To me, the rate-controlled atrial fibrillation is only a small problem on the rapid downhill progression of her malignant condition; to the young members of the Rapid Response Team, new onset atrial fibrillation is the disease.  I want to obtain a pulmonary arteriogram to rule out pulmonary emboli and sufficient oxygen to get her home, but both require transfer to the emergency room.   I know this transfer is going drag my exhausted daughter even deeper into the medical vortex of repeat histories, examinations, venesections,  etc., but  we acquiesce.   A pulmonary arteriogram shows a massive tumor in the lung and no pulmonary emboli.  The endocrine-oncologist visits her in the emergency room and patiently explains the need for determining  the differentiation of the adrenal tumor to guide treatment .  The response to my son-in-law’s query if some treatment can be started immediately is that no treatment is better than mis-directed treatment.  She is scheduled to return to the referral center in four days to begin chemotherapy.  I fear there will be no return visit. 

Overnight admission to the hospital is recommended for “observation” and rest prior to the trip home.  Fifty years of experience have taught me that admission to an academic hospital is not restful.  I have stopped counting the patients who want to be discharged to get some rest.  However, I fear she will not survive the trip home without supplemental oxygen, which only can be obtained via hospitalization.  She receives very little  rest due to everything that happens on admission to a hospital – histories and physical exams by several residents, more blood tests, vital sign checks seemingly every 30 minutes.   I try to run interference – no echocardiogram, no anticoagulation, no cardiology consult, limit the vital sign measurements, etc. – but by 8 am she and her husband, who stayed in her room  overnight, are exhausted.    My daughter and son want immediate discharge, but discharge requires an attending physician visit.  I intercept the attending physician at about 10 am and explain that my daughter has extensive metastatic carcinoma and all that is desired is rapid discharge with home oxygen.  We are assured that this oxygen and discharge meds will be provided as rapidly as possible.   Three hours later, we are still at the hospital.  It is difficult to set up home oxygen on the weekend, and the pharmacy apparently has difficulty filling a prescription for a common drug.  On my 3rd visit to the hospital pharmacy, about 1.5 hours after they have received the prescription, I am informed it will be another 30 minutes until the medication will be ready.   I insult the entire world of pharmacy with my query as to how hard can it be to put 30 tablets in a bottle.   At about 2:00 pm, the oxygen and medications are ready.  The only hurdle standing in the way of our departure is that my daughter fears she will be incontinent on the trip home.  She needs an incontinence diaper.  I then become an actor in a scene that must be played out many times each day in hospitals.  At the nursing station, I explain the situation.  The nurse says she will get the diaper, but she first makes a phone call that seems to go on forever (in reality, probably about  3-4 minutes).  When she then begins to do some paperwork, I gently remind her that we need the diaper.  She responds, “I have more patients to care for than just your daughter, Dr. Levitt.”  Of course she does, but I am only interested in the welfare of my daughter.  We finally depart the hospital, no doubt with a well-deserved reputation for being a very difficult family.

Her condition continues to deteriorate at home, and it becomes apparent that she cannot tolerate a return trip to the referral center.  Arrangements are made such that the local oncologist will administer the chemotherapy recommended by the endocrine-oncologist.  My daughter can no longer speak and we exchange daily texts.   On the day before she is to receive her first dose of chemotherapy (only 18 days after the initial MRI), we exchange the following messages.

“When the chemotherapy does not work, you will have to finish the job.”

“Be optimistic, I’ll do whatever is necessary.”

“Is that a yes?”

”Yes.”

Exactly what I am going to do is not clear, but I intend to keep my promise

The following morning, my son-in-law tells me she cannot get out of bed and coughs and gasps each time she tries to eat or drink.  The “monster” now has destroyed her swallowing mechanism.  It is apparent that she will not benefit from or tolerate chemotherapy.   I talk with her local oncologist, who agrees to admission to the hospital via ambulance, presumably for comfort care.  However, the ambulance driver has determined that her condition requires that she must be taken to the emergency room of the nearest hospital (less than 10 minutes closer than the metropolitan  hospital).  I know she will not get comfort care at the local emergency room.  I speak with the ambulance driver and forcefully tell him where I want my daughter/patient taken.  The next thing I hear is that she is in the emergency room of the nearest hospital.  When I arrive, she again has been through a series of tests, and yet another C-T angiogram shows massive tumor invasion of the lung and no pulmonary emboli.  She now is short of breath, on bi-pap and 100 percent oxygen.  She is then transferred to the metropolitan hospital.   Immediately upon arrival, my daughter  asks for something which, with difficulty, I determine to be ice chips.  I ask the nurse for ice chips.  Her response is that nothing can be “administered” until ordered by the doctor.   I tell her I am the doctor, and I want the patient to have ice chips.  I am told I am not the admitting physician and cannot give orders.   She ignores my request to show me the location of the ice machine. 

Her oncologist arrives in a few minutes.  Comparison of chest C-T’s shows that the undifferentiated tumor in her lung has doubled in size in less than three weeks.  The hopelessness of the situation is discussed with her husband, and a decision is made with the assistance of a hospice physician to provide comfort care.  She receives ice chips, and morphine is administered.  About four hours later, she enters a peaceful coma and dies at 6:30 am on August  29, just 20 days after the initial MRI demonstrated the brain tumors.  

The purpose of this brief chronicle is not to criticize the practice of medicine. While I had several  disagreements with non-physicians, the physicians who cared for my daughter, without exception, were very understanding and gave freely of their time.  Each did everything possible  to deal with her  enormously  aggressive malignancy.   Rather, I have attempted to relate  the experiences of  a father/physician as he watches his daughter die of cancer.   Her course was a testament to the limitations of medical care.  In this era of molecular biology, the most valuable medication was morphine, a drug that has been available for almost 200 years.

Although painful, I am capable of describing the events of my daughter’s illness.  When I try to describe my despair and grief, words fail.

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  1. chaz says:

    thank you for sharing your story; many prayers for you and your family.

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  2. Steve Smith says:

    Dr Levitt

    I can not express the sorrow that I felt reading the account of your daughter’s illness and death.

    Many times while reading, I pictured my wife or one of my kids in the position of your daughter and started to cry.

    My prayers are with your family.

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  3. mac says:

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    • Eve says:

      A DNR order is not the same as a “comfort measures only” (CMO) order. To get ice chips before work up would require CMO paperwork, which would usually preclude chemotherapy. So actually I don’t know how one would legally indicate to the medical would the desire for ice chips but also consideration for chemo. It’s generally easier to blame the patient so we feel less vulnerable ourselves.

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  4. mac k says:

    Hidden due to low comment rating. Click here to see.

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  5. TexCIS says:

    As a parent of grown children, I can only imagine your heartache. I could only hope that if I were in your shoes, I would be as compassionate as you were . . . or if I were in your daughter’s shoes, that I would be as brave as she. My thoughts and prayers go out to you and your family.

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  6. Sharon says:

    My mother succumbed to a brain tumor last year after a long and valiant fight. The doctors and other medical personnel do the best they can, but it is at times like this that we become aware how very little that can turn out to be.

    Please thank your father for writing his story. My heart goes out to you and your family.

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  7. Chris L. Robinson says:

    I am sorry for your loss. I don’t know how you find the strength to tell your story.

    Mine is a selfish comment.

    I grew up without much. I despise hospitals and it has taken me most of my 42 years to accept my middle-class life and schedule regular checkups as opposed to treating my Blue Cross insurance card as an emergency room hall pass. I have to admit that I am fascinated that a medical doctor can find himself as…frustrated(?) as I have been in some of my own hospital visits, both for myself and for my loved ones. One of the things that has troubled me most is the constant parade of interns, apparently brought in so that the suffering of my loved one could be a teaching experience.

    If I may ask, what is your opinion on this? Am I being unreasonable in thinking that such educational poking and prodding is inappropriate? Is it for the greater good?

    To read of a doctor having his requests ignored–his demands ignored–sadly comforts me as a person who often secretly thought, “If only I were a doctor or knew someone, I could pull strings. I could get secret treatments. I could at least get them to take my grandmother where *I* want her to go.” Oh, the injustice of it all.

    But maybe I was, at least partly, simply being subjected to the limits of the medical system.

    Maybe.

    Thank you for sharing this.

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    • eternal says:

      I can understand that it might seem offending, but how else are they going to get the experience to handle cases on their own one day?

      I much prefer encontering interns than facing a much greater problem of facing some staff so inexperienced that they in practice become incompetent while still handling things on their own…

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  8. Karthik Sarma says:

    Hi Professor,

    We met briefly when I was a student at the U of C lab school — I’m now an MD/PhD student at UCLA, and I’ve just returned home from the annual meeting of the California Medical Association. I’m so very, very sorry to hear about your and your family’s loss, and about the (sadly common) repeated failures of the medical system that made an already impossible situation even more stressful for your family.

    I wish I knew what to do about some of the problems you faced. I’m an informaticist, and I know that perhaps with better rollout of EMR and analytic systems we could have spared your sister the wasted repeat questions and tests. Perhaps a more sensitive approach to training would have spared her the repeated and pointless intrusions by residents and students (like me).

    I think, however, that the real problem here is that we just have no idea what to do about end of life care. Some of the other readers have commented that it is possible that various legal instruments, such as a signed DNR, a living will, or POLST form might have helped ease her transitions. However, medical professionals continue to fail to counsel their patients to think about and complete these documents, even as we fight vigorously (this past weekend’s conference a clear example) against the possibility that anyone else (such as nurse practitioners) could possibly help a patient fill these forms out. Unfortunately, this is not a technological problem — it’s a cultural problem in medicine, and the culture of medicine moves slower than a glacier. In the mean time, patients and families continue to have their wishes ignored at what is the most challenging time of their lives.

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