Don’t Give Up When Told To Give Up
The following three stories are about patients where I was told by hospital staff and physician consultants to give up on three patients and “let them go”. For two of them, they were unconscious, had no written expressions of their wishes and had no family with Power of Attorney. The third was conscious and did not want to give up. All three ended up being miraculously improved and survived.
The 26 Year Old
It was 1987. I was on the Med-Surg floor of a hospital where I had privileges. The hospital Social Worker approached me and asked if she could ask me a favor. I turned around to face her, having been focused on completing my patient charts for the morning so I could get to my office to start seeing patients.
“What can I do for you”, I asked. “We have an inpatient whose doctor is leaving the city and we thought you would be the best doctor to take over her case”, she said, “She’s a Healthsource Insurance member and we know you take Healthsource patients.”
I asked her to tell me about the patient, who, she said, was a 26 year-old female with Werdnig-Hoffman’s Syndrome. I had never heard of this. It turned out, the reason why was, I am an Internist, what some call an adult medicine physician. Werdnig-Hoffman Syndrome is a pediatric diagnosis. It is Type I of a series of similar syndromes called Spinal Muscular Atrophy. It looks a lot like Muscular Dystrophy. The difference is Spinal Muscular Atrophy’s cause is neurological (nerves no longer controlling muscles leading to muscles shriveling up) where Muscular Dystrophy’s cause is a problem within the muscle itself.
The patient was lucky to be alive. The life expectancy of Werdnig-Hoffman Syndrome is less than 20 years old. This patient was 26, pretty much unheard of. She was bed bound and required a caregiver in her house 24/7. Her lung function was terrible and she required aggressive pulmonary therapies to keep her lungs clear and free from pneumonias. She had been in and out of the hospital frequently due to recurrent pneumonias.
I told the Social Worker that I would be happy to take on this patient. I don’t think I ever turned down a request like this. The patient was incredibly small, a wraith, and weighing only about 60 pounds. Interestingly, she had a job, computer work at a local government defense company. She couldn’t move her arms or legs. She gurgled, due to lung secretions, with every breath. She required “pulmonary toilet” (respiratory therapists giving her nebulizer treatments then banging on her frail chest) every 4 hours 24 hours a day, which had to be painful.
She was particularly sick on this admission. I almost felt helpless treating her, she never seemed to get better. I had pulmonologist and neurologist specialists as consultants. After about two weeks, both the specialists and the staff (especially the respiratory therapists and nurses) telling me I should just stop the treatments and “Let her go”, since her treatments had to be uncomfortable, she wasn’t getting better and she had already exceeded her life expectancy by over six years. Most of these patients die of pneumonia because they can’t manage their pulmonary secretions.
So, I had a heart to heart talk with this patient. She was adamant that she did not want to stop therapies. Every day I had the staff telling me I was torturing the patient. This prompted me to, every day, re-evaluate what was going on with the patient.
At about three weeks into her hospitalization, I developed a theory that her secretions weren’t originating from her lungs. I was suspicious that she was having gastric reflux and was, nightly, drowning in liquid coming up from her stomach and going down into her lungs. None of her tests showed this and the staff and specialists weren’t convinced of this theory.
I had to try this theory out. I discussed it with the patient and she agreed to give my idea a try. The treatment had two parts: 1) position the patient so the gastric reflux fluids drained out her mouth instead of down her trachea (windpipe), and 2) start her on Prilosec, an acid reducing drug, to see if that would reduce the amount of fluid in her stomach.
Well, this treatment was like a miracle for her. Within a week her lungs were dry and I was able to discharge her. She rarely returned to the hospital during the next two years. She and her 24/7 caregiver actually took a train trip to the Grand Canyon, over 2400 miles away! She was happy and felt grateful to me for figuring out her problem.
I left the area after caring for her for about three years. The last I heard about her, she was 35 years old and doing well. I lost track of her and can’t find her on Google searches. The last time I talked to her on the phone she said she wrote a book, but I’ve never been able to find it.
I’m glad I didn’t listen to the specialists and staff!
The Spinster
It was 1986. I was on “service call” for the hospital. Service call is when you are called into the ER to see patients needing admission who don’t have a primary care physician (PCP) who has privileges at the hospital.
I got called in late in the evening one night to see a 68 year old woman who was found unconscious on the floor of her home by the police. No one knew how long she had been there. She was single, never married, and no one knew if she had a next of kin. It turned out, she didn’t.
She was a physiological mess. She had acute renal failure, rhabdomyolosis (breakdown of muscles) from lying on the floor for who knows how many hours, her metabolics were all out of whack, she was intubated, etc. What the medical profession calls a “train wreck”.
I created a flow chart of her lab tests and aggressively treated all of her physiologic abnormalities. She didn’t wake up. I weaned her from the ventilator, but I couldn’t extubate her because she remained unconscious and at risk for aspirating stomach and mouth secretions into her lungs. I had the respiratory techs put her on a T-tube (a device that attaches to the breathing tube but the patient breaths on her own and we can give her humidified oxygen or air, depending on the oxygen level in her blood).
Once I got her off the ventilator, I was able to transfer her to a Med-Surg floor in a regular bed. All of the specialist consultants told me she would never wake up and I should “just let her go”. She had no Advanced Directive and no known next of kin to ask. I figured, givien that situation, I should keep treating her.
The hospital administration started pressuring me to either “let her go” or get her transferred out of the hospital because it was now costing the hospital too much money to keep her in the hospital.
At the time, I was on the Utilization Committee of two skilled nursing facilities (SNF). I went to the administrator of one of the two and described a plan for this patient after transfer to their SNF. The patient would have to come there still on the T-tube, since she was still unconscious. To my delight, they agreed to take her. This was unusual, that they would take a patient on a T-tube.
The patient got transferred and I rounded on her daily. After about a month, she woke up! The respiratory therapist and I extubated her. She never needed to be re-intubated. She slowly improved to the point where she was ambulatory with no residual neurological deficits. The specialist consultants couldn’t believe how well she did.
She and the SNF staff decided she should be transferred (an internal transfer) to the nursing home floor of the facility. I kept her on as a patient, visiting her every 60 days. One day, while I was reviewing her chart before seeing her, one of the nurses approached me. “Going to see Ms. Smith?” she asked. “Why, yes”, I said, “Is there something going on I should know about?” The nurse said, “You know, she’s adopted you. She considers you to be the son she never had.” “Really”, I said. “Yeah”, the nurse said, “She really loves you!” I kept this information to myself.
Two years later, I was moving to another state, having had my practice taken over by a hospital, which I disliked. I made my last nursing home rounds and had to inform Ms. Smith that I was leaving the state and her care was being transferred over to another doctor as of Friday at the end of the month. She wasn’t happy about it.
I was in my office on my last day there, seeing patients. I was in a room seeing a patient when my nurse knocked on the door. It was 3:30 PM on my last day as a physician in that city. The nurse said the nursing home was on the phone and had to talk to me.
I picked up the phone, thinking they wanted a laxative order (or something like that) for one of my nursing home patients. What I heard stunned me. Ms. Smith had passed away. On the afternoon of my last day seeing patients in that city. The nursing home staff thought she died of a broken heart.
The Overdose
It was 1992. I was in my office seeing patients when I got a call from a hospital to which I rarely admitted patients. One of my patients was just admitted to the ER and they were certain she needed ICU admission. They wanted me at the hospital immediately. I ran out of the clinic hollering that the staff needed to reschedule the rest of my afternoon patients.
I arrived at the ICU and found a 35 year old woman who I had seen only for periodic health exams, and maybe only 2 or three times. She was a piano teacher, and since I was also a pianist, we had talked about music. She had a history of depression being treated and followed by a Psychiatrist.
She was intubated, comatose, seizing and exhibiting runs of cardiac dysrhythmias, both ventricular tachycardia and ventricular fibrillation. The history I was given was, the patient was found unconscious in a car in a parking lot of a city park by a police officer. He called for an immediate ambulance and the patient was transported to the nearest hospital, a community hospital on the outskirts of the city. Her ER evaluation revealed an amitriptyline overdose with an amitriptyline blood level of 1300, the therapeutic range being 80-200. Anything over 500 causes significant adverse events. Over 1000 is considered likely lethal.
I started medications to calm the seizures and dysrhythmias, as well as applying the defibrillator paddles every 4-5 minutes, and called for emergency consultations with Cardiology and Neurology. They came to the ICU as fast as they could, evaluated the patient, said I was doing all the right things and suggested some tweaks to my plan. I had to stay in the ICU until after midnight to manage her since it took a while for the medications to take effect. She seized many times and we had to cardiovert her many times during those next 8 hours.
The next morning, her amitriptyline levels were still over 1000. It actually took three days for her level to get below 500. The Neurologist and Cardiologist said she would never make it; that no one could survive an amitriptyline level above 500 for four days; it was unheard of. And if she survived, she would likely be a “vegetable” after all of those seizures. The neurologist said her brain was most certainly “pickled”. They advised that I not be too aggressive with her treatment. The patient had no advanced directive and there was no known next of kin we could contact.
I spent 3-4 hours a day in that ICU for five days. Once her amitriptyline level came down, she woke up. When she did, she slowly came out of a stupor and seemed normal, like I remembered her. We put her through a battery of neuropsychological tests and they were perfectly normal. Interestingly, psychiatric evaluation concluded that she was no longer depressed. It was like her overdose had been similar to electro-shock therapy. Probably, all those seizures (electro-shock therapy induces seizures).
I saw her in my office several times over the next 3 months. She was back to teaching piano, had no problems playing the piano, had no signs of depression and was on no antidepressant. The Neurologist was flabbergasted.
The patient was thrilled and not at all suicidal. For s long as I was her physician, she never attempted suicide again or needed antidepressants.