Why we cannot keep the costs of end of life care in a reasonable range

“J.T.” is 92 and clearly a soul who lives to the beat of a different drummer. She has no children and her closest relative is a niece who she despises. Despite this the niece oversees her care, sending in a full time aide and her personnel assistant to run the household. J.T. will not come to the office for a visit. If I call and make an appointment to see her in her home she at times will not permit me into her home. Despite her abrasive nature she is legally competent to make decisions and remains thin and frail but with no major acute medical problems. She is cognitively impaired to a moderate degree but legally competent to make decisions.  She too has executed a living will and has a large “do not resuscitate” form posted on her refrigerator door.

Several months ago the niece called me to say her aunt was failing. She claimed she was ungroomed and refusing to bathe or eat. She said her hair was unkempt and nails long and filthy. She said she wasn’t eating.  She asked me to make a home visit.  I went out to the home with my nurse.

Upon arrival the patient at first did not want to let me in. I pleaded with her and she opened the door and invited us in. She was in a clean house coat. Her hair was wet having just gotten out of the shower. She was clean. The home was spotless. I asked her if I could have a cold drink so that I could get a look at the inside of her refrigerator. It was full of fresh food and beverages and was spotless. I asked to use the bathroom which was clean and spotless. The patient remarked that she had been under the weather the week before and had cancelled her weekly appointment at her nail salon.  I took a history, reviewed her medicines in their original pill bottles in the closet to check for accuracy and performed a brief but thorough exam. I pronounced her fit. We reviewed her end of life issues and choices with her and the aide. She said that if she got ill she would prefer not to go to the hospital unless I needed to send her to relieve pain and suffering.

Last month my office received a call from a new aide saying that the patient had fainted at the dining room table and was uninjured. By the time she got over to check on her she was up and coherent. The patient had no chest pain or breathing problems. She had no neurologic deficits. She had no visible seizure activity.  The aide called 911 before calling my office and the paramedics were there and were transporting her to the ER.  The patient did not want to go but the niece, who has power of attorney insisted that she go.  Upon arrival in the ER she was fine. A CT of the brain was performed upon arrival and was non-diagnostic as were her EKG and blood chemistries and electrolytes. This was all completed before my arrival.

Upon my arrival I met the new aide.  She was quite glib and forceful. She told me she had been the caregiver for the niece’s mother. When the mother passed on several weeks ago, the niece had fired her aunt’s longtime aide and replaced her with her mother’s former care giver.

We kept the patient in the hospital overnight for observation. She was seen by a neurologist and by her own clinical cardiologist who had not seen her in three years since she became a recluse. By the next morning the patient was fine with all tests and scans normal.  I wrote discharge orders.   Two hours later I received a phone call from the floor nurse telling me that prior to discharge her heart rate had dropped to below 40 beats per minute without her suffering any symptoms of illness. The cardiologist suggested we keep the patient and have her seen by an electro physiologist for evaluation for a pacemaker. I called the niece to explain the change in plans and she actually accused me of keeping her aunt and suggesting a pacemaker to generate a higher bill.  I suggested we ask her aunt if she would consent to a pacemaker if she needed one. She said she would.

The electrophysiology physician did an evaluation and determined that the patient did not in fact need a pacemaker. We then planned to send her home again.  I set up a phone conference with the niece and caregiver and suggested that we return to the original plan of only calling 911 or moving the patient to the ER or hospital if we needed to for the relief of pain and suffering as originally planned.  The niece refused to follow that plan. She told me the aide didn’t want to stay in the house with a dying individual and she instructed the aide to call 911 whenever she felt it was appropriate. “I can’t have my aide watching my aunt die at home. “

The decision of the niece clearly is contrary to the wishes of her aunt. It is one more example of the public being unwilling to provide comfort measures at home and follow the guidelines outlined by their senior relatives when they were competent and able to make their choices. It is one more example of why we cannot keep the costs of end of life care in a reasonable range.

Steven Reznick is an internal medicine physician and can be reached at Boca Raton Concierge Doctor.

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