Nobody Asked

I asked an attorney friend of mine who teaches other lawyers about guardianship matters how I can write a letter to the judge about loose ends in a guardianship. Her reply was, "I wouldn't because it's done and nobody asked."

Well, the loose ends are that nobody asked. Law and justice sometimes interface with health care. Guardianship involves mental health, keeping up with medications, preventive health, and making crucial decisions in a hospital. Questions about health and health care cannot be left as loose ends at the time of judgment. People who need guardians by definition are marginalized and more often than not have serious health issues around which they themselves cannot self-advocate. The average observer holding the scales of justice is blindfolded to the medical issues.

I left the courtroom at 60 Center Street, specifically room 355, officially ambiguious. There was the former doctor sitting behind me who had been dismissed for failing to provide nursing care to a pressure ulcer for one year, failing to communicate with a health care agent, failing to tell everyone that the skin cancer she scraped off was still in the skin and would come back, and failing to give the flu vaccine to an old bed bound person. It was official in the court record that she could visit the patient as a friend because the old bed bound person, a ward of the court, likes her so much. I also heard say the judge that the current doctor should be replaced with an "independent" physician but no such “independent” physician was identified in courtroom 355 on Friday at 4 pm.  Neither was the appointed guardian in the courtroom. Only five lawyers could raise their hands and asked for "specific language in the settlement" and "clarification about a co-guardian," advocating for their clients. Left loose and off the record was a provision for health care on Friday at 4 pm. I have been providing her health care 24 hours no matter business, lunch or after hours, but I wasn't given the last name or phone number of the guardian. I know him as "cousin Sam." The most I could do was to give my card to "cousin Sam's" attorney, but she didn't give me hers. My patient's appointed attorney took my card, but said she didn't need to know me the reason being that she is the old bed bound person's lawyer and apparently not her advocate. 

I woke up Friday night with a nightmare that my bed bound patient who has no fat padding rolled out of bed on to the linoleum with an INR of 3.4 and the home health aide called for blood on the floor, but it was only a dream that I could not notify “cousin Sam” that I had sent her to the nearest ER unconscious or that I had sent a fax of her medical conditions and lab report to the hospital. What isn't a dream is that tomorrow while the guardian and his attorney might have time to take up the search for an "independent" home visit physician during business hours, the nurse coming to do wound care will have run out of the state of the art wound care supplies for the bedsore and the ambiguously current geriatric care manager has no access to funds to order more of them and she doesn't know the guardian either.. And if the guardian and his attorney haven't found an "independent" home visit physician a week from now, the seven-day-four-slot pill box with mission critical medications will be empty and the home health aide won't be able to cue the bed bound patient that it’s time for the before breakfast pill, the after breakfast pill and the after dinner pill too.

The official court record does omit addressing if everyone who has an ethical obligation to stay involved has adequate access to everything that they need to meet the 24 hour needs of the bed bound person. The official court record says that the former physician can come over to play chess because the patient requested that, but "nobody asked" if the ambiguously current physician and new guardian know how to contact each other. Justice sees the guardianship as “done” while medicine sees the ward of the court as being invisible to the blindfolded.

Posted on October 12, 2015 .

Rose died with all of her marbles

Rose died today with all her marbles. Anyone who knew her can hear her say it with that hard-to-place European accent. "I've got all my marbles," as she pointed to her temple with a wink. Metaphoric marbles are a point of competitive pride with anyone over ninety, but hardly anyone who is 94 and six months gets so lucky as to die with all of them. Rose was in a coma or near coma for only the last 16 hours of her life, but that and morphine don't count for lost marbles because earlier this week she told me the date of her granddaughter's husband's annual colonoscopy as if she simply had to keep track of it for him. The day before today she told me her sweater was cashmere and gave me exacting instructions on how she washed and ironed it in order to keep it looking like new for the last 10 years.

I met Rose in 2009 when her primary care physician left the area and her pulmonologist referred her to me. At the first visit I was tested. She asked about why she needed to take medications if she didn't have the illness to go with them. She couldn't make sense of why one doctor prescribed a diuretic and another switched it to a different one without explanation.. She wanted to know how smart I was and to find out if I would attribute her concerns to "old age." She treated the first office visit like a first date and sized me up to see if we had longevity potential.

Rose wasn't going to be one of those people who leave the last choices of her life up to others. This was between her and me minute by minute. Besides reminding everyone that "when it’s your time, it’s your time," she carefully left her sons out of explicit acknowledgment of prognosis. She didn't ask me for prognosis either, but instead read my face for silent information, the same way I read hers for how much moral and mental energy she had left to get through the irreversible deterioration of her physical being. I can't recall ever seeing a body die day by day for weeks without losing any marbles despite worsening in the number of things that doctors measure. Rose and I had a secret language. I can't trace the origins of it, but it got us through at least four health crises with return to quality of life. What is a doctor if not a partner during life and near misses?

Rose died hours after a quick bed bath and change of night gown because all three of us who were there knew the morning routine. She died under her daughter-in-law's purple-turquoise hand knit cashmere throw. Before her sons arrived her companions giggled the secret story of Rose instructing them to practice Kegel exercises as her public service reminder to aging women everywhere. Practice makes perfect to prevent incontinence. The granola-baking granddaughter was there to repay mothering with a song of love. Another daughter-in-law physician accepted responsibility for titrating morphine to life without symptoms. I was with Rose almost every day in the last two weeks as her body deteriorated and despite the symptoms, eye to eye we both pointed our finger to our temple and said the word "marbles."

Posted on December 24, 2014 and filed under Death at home.

Ageism is negative and depressing

Today I went to a meeting for the Radical Age Movement where people in their 60s and 70s, all of whom were working, articulated their experiences with ageism and why the old are the last group left to face discrimination. All other marginalized populations have had their shifting views movements. I heard how a professor can not say to himself or others that he attributes his skills at being effective to his age. I heard that being offered a seat on the bus evokes widely different emotions and actions. I think this organization will use the experiences of people currently in their 80s and 90s to change the perceptions of age, disability and community of care fast forwarded 20 years. 

Today I got email from someone who was trying to connect me to the senior services for an extra large apartment complex in New York City where people have aged in place. The feedback from the director of the senior program was that the images of old people on my business card are "depressing" and that I should say that I make "house calls" instead of provide accessible care for the "homebound" because that's "negative."  I think that the reason that the homebound elderly are invisible is not because they can not leave their homes but because many people choose not to acknowledge them.

Posted on November 10, 2014 .

Dr. Odd and Ms. Vulnerable take on UnitedHealthcare

On Wednesday I was called by a representative of Ruth's insurance company, UnitedHealthcare, to request lab results. Yes, her health insurance company wanted in. They wanted to look at the control of her diabetes with no context of our private discussions about her diabetes. Apparently, UnitedHealthcare is on a parallel track to reach some lab goals on paper for a woman who is 90 years old. Ruth and I have our own goals for her health. A nameless, woman wanted to send a written request for specific labs, she emphatically claimed that Ruth signed a paper authorizing permission for me to send the results. I told the anonymous representative of the mega-for-profit organization that it was unlikely that she was giving informed consent for them to get into the doctor-patient relationship, furthermore that if she had signed something, I would see that she revoked consent to send them anything. The person on the other end of the phone said, "You sound odd," and hung up.

I called Ruth and asked if she signed papers for me to send lab results to UnitedHealthcare and she said, "No."

Then Ruth and I reviewed the instructions which I had given her many times before after she let seemingly well-meaning people with no names into her home. Don't let anyone in your door without calling me or your step-son, and don't sign anything no matter how nice the person seems.

I said, "You are vulnerable old lady." "You think so?" she squealed. Then answered her own question giggling, "I guess I am!"

Within minutes of hanging up on Dr. "Odd", the anonymous representative of UnitedHealthcare called Ruth to invite herself for an apartment visit on Friday. Ruth initially said yes to the still nameless woman from UnitedHealthcare, but then remembered my instructions from five minutes earlier and called me back to get her phone number so she could cancel the reconnaissance mission. Ruth and I think that her health insurance company is crashing our doctor-patient relationship. I wonder what they can do to improve Ruth's health with just a number on paper and without knowing all the things I know about her.

Posted on November 8, 2014 .

When she gets this way, I feel I have to do something

He is a baby-boomer son who for years got his mother the best possible medical care. It’s not that he made her decisions for her, but he found the best evaluation and she weighed in with the yes or no choices. Together, they got through some complex surgery. They dealt with months of adjusting medications to treat side effects of other essential medications. When he found me, it was to address an acute respiratory infection, and then he told me about the urinary tract infections which "occurred like clockwork every month." Because she was homebound, a dedicated specialist working outside his area of medical expertise, in effect filling a void in access to primary care, was authorizing a urinalysis monthly. And every month she also had sudden urges to urinate, mild leakage of urine, false alarms of getting to the toilet with an empty bladder, as well as cognitive lapses, minor paranoia and transient disturbance of personality. Her son was now rightly concerned about combining the antibiotic for the respiratory infection with the antibiotic for her "like clockwork" urinary tract infection. Me too. When I received the urine culture and urinalysis results collected in the past two months, and knew the context of how the urine was collected, it was clear that any bacteria which got to the lab were from her skin or the plastic commode bowel.

Her son had a hard time accepting that the antibiotics he gave her were not treating an infection because her sudden urges to urinate, mild loss of urine, false alarms of getting to the toilet with an empty bladder, and fluctuation of mind were perceived as getting better because of the antibiotic. He said, "When she gets this way, I feel I have to do something."

This is a common mistake doctors make too. It’s not what we can do; it’s what can be achieved. We can cure an infection with antibiotics if it’s the right antibiotic. We can avoid very serious side effects, medication interaction, and future bacterial resistance if we don't give antibiotics when there is no infection.

The focus for caregivers should be achieve something instead of do something.

Posted on November 6, 2014 .

My Birthday? That was Last Year

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Rose has chronic lung disease which is gradually worsening and limits her activities to staying near or within her own apartment. Her family is aware that her health will deteriorate and sometimes assume that a dip in her health can not be restored. Over a period of two weeks I got calls from family and caregivers for confusion, shakes and not eating and was able to respond to calls of concern by bringing the medical evaluation to the home instead of sending Rose to one of the three nearest emergency rooms, two of which would have had no past medical records for her.

Rose had a reversible metabolic condition superimposed on her chronic lung disease. Emergency room physicians and specialists who are not trained in geriatrics would have viewed Rose in the simplest way possible. This is just a confused 93 year old with advanced disease and a family with high expectations. These health care providers had no prior knowledge of her past resiliency recovering from a hip fracture, pneumonia and a skin ulcer. They would not have viewed her medications which had gone from being a good idea to treat symptoms in the past to contributing to her present acute metabolic problem. In a hospital Rose would have been stereotyped as “nothing more we can do.”

That’s not what I saw. I know that one day I will have to say to her two sons, “I will be here until the end, because we can’t reverse the disease,” but this time I could distinguish that reversing the delirium was achievable. In order to do that, I made home visits weekly including one on a Sunday afternoon with four family members and two caregivers which lasted three hours and was followed by daily proactive follow up phone calls. Three days before her 94th birthday, I called Rose and she said, “My birthday? That was last year.” Even with a delirious mind, Rose herself wasn't sure she would live to her next birthday but she and her family put trust in an old fashion primary care relationship with a doctor skilled to know that we can treat this and we can do it at home.

Posted on September 8, 2014 .

Surrogate reporters

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Geriatricians often take care of older adults who cannot directly tell the doctor what they are experiencing, so these doctors may need to get information about changes in behavior or body function from surrogate reporters such as children, spouses or other caregivers. Surrogate reporters provide the doctor with their observations of the patient when the patient can not communicate their symptoms at all, or to fill in the missing details about when and how often something is occurring. In effect one person is telling the story of someone else's health through observation. This week, I was dealing with surrogate reporters, caregivers, who were using a psychological theory of human behavior called explanatory attribution instead of providing me with an exact report of what is going on with a sick homebound geriatric patient. Instead of directly answering my questions, they gave me their explanations for why she was coughing, not eating, sleeping too much, and not sleeping.


A caregiver who is a surrogate reporter using explanatory attribution to give information to the doctor is dangerous. It is the doctor's job to repeat the question until the doctor gets a descriptive answer instead of an explanatory answer. Explanatory attribution by those without knowledge give the doctor their opinion of the answer.. Family members and caregivers can not diagnose or treat because they are not trained in how complex diseases that the patient is known to have interact with each other, or what diseases she is likely to get, or what diseases can't possibly be responsible for the problem at all. Diagnosing is a complex micro-multi step process based on probability and not based in common sense. Explanatory attribution could never be used for making a diagnosis or adjusting a treatment plan

 

Posted on June 24, 2014 .

Communication about Pressure Ulcers. Improving Care and Reducing Risk

On June 12, I gave a medical grand rounds lecture at Trinitas Hospital in Elizabeth NJ on pressure ulcers to about 30 resident physicians and 10 attending physicians. The emphasis was on prevention and situations where prevention requires more than standard care. Pressure ulcer prevention is dependent on the team of doctors and nurses at the bedside. Wound care consultants have an obvious conflict of interest in preventing ulcers, yet hospitals are still reimbursed highly for having a wound care center and consult service. The ability to examine a pressure ulcer, just like doing a heart or lung exam is what allows a bedside medical team of young doctors in the hospital to at least not make a pressure ulcer worse before they can get expert help. This situation occurs when they are caring for a patient who comes from a nursing home or home with a pressure ulcers. I talked about how much easier it is to prevent a pressure ulcer than to treat the secondary complications such as cellulitis, osteomyelitis, sepsis and pain.

Posted on June 13, 2014 and filed under Teaching.