Caring for a parent

Health Care Rabbit Hole

My reading and my experience as Mama’s primary caregiver over the past six months has convinced me that what Mama needs is a geriatrician at the head of her care team: a head rabbit that would take care of her, not just the crises or her individual ailments.

We have seen Mama’s heart doctor prescribe one medication in a particular dose and, after her hospital visit in September, her primary care physician at the time (whom I have observed has very little time for her) change the prescription in agreement with the recommendation of the PA on call in the hospital who had never seen her before. After Mama made the unilateral decision to return to the original dose two days later, because of her belief that it was affecting her vision and her energy level, her heart doctor, in a bit of a snit, turned over the official decision to the PCP. No one was in charge of Mama, and they were fighting over who was in charge of her heart. No one, including her family, believed that she could tell the difference in the medication dosage; but apparently she was right. She felt better again after reducing it. It was only then that we realized that her goal-to maintain the highest possible level of functioning, even if that means her heart might give out a year or two sooner-was not known by any of her physicians and is not in any record anywhere that we know of.

So why don’t we have one? There are no geriatricians in my smallish town. There are six “geriatric specialists” in Olympia’s online listings, but none are board certified; and four are with Kaiser Permanente and one with Group Health. Presumably, though I don’t know for sure, the patient must be enrolled in those programs to be in the specialists’ care. Only one of the six is not at or near retirement age himself.

According to demographic projection tables, by 2015 there will be over 3.5 million more people in the US over the age of 80 than there were in 1990. Yet only 1% of the nation’s physicians specialize in geriatrics; down more than 20% in the last decade. Jane Gross (A Bittersweet Season: Caring for Our Aging Parent-and Ourselves, 2011), states that “only 9 of the nation’s 145 medical schools have full departments of geriatrics [evidence, perhaps, that it is not a field even medical schools value]. Nobody anticipates future success in recruiting students to geriatrics.” She goes on to say, “Such care defaults to internists and family doctors, most of whom are not qualified for the task, and their numbers are also dwindling. Most residents in these and other specialties receive as little as six hours of dedicated instruction in the complex areas of elder care.”

In spite of the low numbers entering the field, when surveyed by medical journals, geriatricians consistently rank at the top of the list in job satisfaction, in part because they know they are improving day-to-day life for an entire family. So why is the field shunned? Money. A geriatrician, like a pediatrician (unlike doctors for adults in their prime) is taking care of a patient who is being taken care of by others. Like the pediatrician who includes parents in the care team, the geriatrician includes adult children and/or caregivers. And that takes time. Medicare already pays doctors less than commercial insurance does. And even though it is insurance for the elderly and disabled-who, by definition, require more time-it reimburses for doing, not for talking. Jane Gross again, “the cornerstone services of a good geriatric practice are not reimbursed: lengthy assessments, telephone consultation with family, and medication management.” Under the Affordable Care Act, Medicare has begun paying 10 percent bonuses in physician reimbursement for evaluation and management. Perhaps because it is currently only set to continue until 2015, the latest stats just out show the number of doctors enrolling in the nation’s fellowship programs to become geriatricians has dropped again.

I am getting quite the education in this gig I am in. And I am getting more and more frustrated as I become better acquainted with what my mother, and my sister as the previous primary caregiver, have been experiencing for years. No wonder managing their own healthcare is the full time occupation of the elderly. No wonder adult children are exhausted caring for parents who can’t care for themselves. We have to be the head rabbit of everything, including health care about which we know nothing. I have gone with Mama to all kinds of appointments. It takes a long time. Some of her providers listen patiently to her litany of what is wrong, even if it has nothing to do with why she is there. Others do not. She is desperate for someone who will care about her whole story; and she has no idea how to limit her remarks to that provider’s interest.

We are among the lucky ones. Mama is in relatively good health and has adequate financial resources; and it is still exhausting. Health care for the elderly is in the hole, and we are digging deeper faster to accommodate the growing number of arrivals. I don’t know what we can do, but we have to start producing ladders instead of shovels. A good number of us are nearing the edge of the rabbit hole, and no one is in charge.

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