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."

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.

My Birthday? That was Last Year

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.

Surrogate reporters

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