Julie – November 21, 1999 Status Report

Monday’s post was a commemoration of Julie’s birthday;1 today’s post, providing symmetry of a sort to the week, is another (and the final) report on her health status. I originally emailed this note to friends and family November 21, 1999, less than two weeks before she died. Those who have read the earlier health reports I’ve posted2 may correctly notice that in the following post, I am significantly more active in dealing with doctors and the healthcare institutions. It was only at this point that Julie could no longer serve as her own primary advocate, a role she insisted on handling as long as it was possible.

end3

To Our Family & Friends:

My pervasive vigilance for eleemosynary opportunities, complemented by my well-known civic pride, has led me to alert the Crystal Lake Chamber of Commerce to the potential advantages of changing the city motto from the admittedly provocative

Crystal Lake: A Town Built Around a Lake of the Same Name
What Are the Odds of That Happening?

to an arguably more tourist-friendly:

Crystal Lake: Lourdes of the Midwest

Yep — Julie has now put together two or three good days in a row (if you are willing to accept a rather liberal interpretation of “good day”). While she is still bedridden, she reports feeling stronger subjectively. The only cognitive defects she now displays in routine conversation are a distinctly liberal bent to her politics and a similarly incomprehensible (to me) trust and confidence in others. She is eating more and has decreased her minimum sleep requirement to 10 hours a day.

The blood samples, drawn earlier this week by one of the dialysis nurses who spontaneously vaulted far beyond her job description to trek out to the hinterlands without benefit of Sherpa, were not catastrophic (“not catastrophic” is the equivalent of “perfect” in the weird world of Julie’s labs). Her hemoglobin and hematocrit have, however, declined significantly despite the infusion of three units of blood in the past two weeks.

In a passive-aggressive frenzy, the HMO gatekeeper, (in fact, Dr. Cerberus is a fitting alias for this physician, who, if she knew what was good for her, would operate exclusively under a false identity) who apparently felt under duress, begrudgingly approved the bone marrow test Julie’s oncologist recommended.

Of course, “approved” is used in the preceding paragraph in a purely technical sense, as in “all right, all right, get the bone marrow if you think it’s so important.” As it turned out, we indeed thought it was important, having established a long-standing bias to choose the life side of the coin when faced with life and death decisions. Go figure.

In keeping with her usual M.O., Julie somehow arranged to have the test completed 18 hours later and handled the procedure without a flinch. I was a tad more reactive. Julie’s was the third bone marrow aspiration I had observed; the first was one I watched as a fourth year medical student and the penultimate was one I performed 20 minutes later, using the sternum of an adolescent boy as a site. I plan to submit to the New England Journal my version (inevitably to be known as the Showalter Variation) which transforms the old medical school bromide, “See One; Do One; Teach One” to the more managed care-compatible “See One; Do One; Wait 20 Years; See Another One.” Julie’s results should be available next Tuesday or Wednesday.

The healthcare bureaucracy, however, remains invulnerable, inflexible, and incomprehensible. Having reluctantly acceded to Dr. Cerberus’s recommendation that Julie enroll in the hospice program, a recommendation accompanied by specific assurances I wrung from her that the hospice staff would handle the dialysis needs and any blood transfusions necessary, we found, of course, that ongoing dialysis and blood transfusions are automatic reject-criteria for hospice programs.

After some research, I have discovered that these (and many other odd criteria for hospice admission) are derived in toto from the concerns of the US legislature and federal healthcare agencies that allowing these procedures as part of hospice care would result in folks living past their actuarial tables predictions of no more than six months in the hospice. Damn cheaters. This fact is made clear by the review process offered: “… such patients may be eligible for the Medicare hospice benefit if the documentation by the physician shows sufficient evidence for a prognosis of six months or less in the absence of meeting the criteria in these policies.”

I’m thinking of offering the hospice, in return for a waiver of these requirement, my guarantee that Dr. Cerberus will not live more than six months.

After my prolonged, occasionally loud but only rarely profane motivational session, the sincerely sympathetic hospice folks have agreed to petition our HMO and ultimately Medicare for an exception to allow Julie to receive hospice nursing services in the home while maintaining her dialysis. Results from this effort should also be available next week.3

Because of the problems with hospice qualifications, I requested Home Health Care, a benefit Julie has under our HMO policy and Medicare. After pleas from me, Julie’s oncologist, Julie’s nephrologist, the hospice, and Uncle Vito, Dr. Cerberus relented and ordered in-home services. This victory, however, was illusionary because it only moved the battle from the HMO physician (who appears to have a residual fragment of shame and is thus less than the guardian she should be) to the HMO physician’s “referral specialist” (whose strength, if not that of 10 men, is that of the Three Stooges and similarly dependent on obliviousness to the real world).The Referral Specialist left word that Julie did not qualify for Home Health Care because she “has no rehab needs.” My assumption is that the reference is actually to the requirement for skilled nursing care (loosely defined as services that only an RN, Occupational Therapist, or Speech Pathologist) could provide. The contention appears to be that

  1. Attending to that dratted twice daily peritoneal dialysis that disqualifies her from hospice is well within the purview of the guy on the street (come to think of it, the guys on the street have been more helpful than the HMO)
  2. The twice weekly Epogen injections (to stimulate blood cell production) could perhaps be assigned to the cleaning staff
  3. The phlebotomy skills involved in drawing blood from Julie’s long since invisible veins would be a nice addition to my mother’s needlework repertoire
  4. Teaching Julie to compensate for the impairment to her speech caused by the paralyzed vocal cord can be left to Julie’s mother (well, she taught Julie how to talk when she was two; she can do it again)

So, I succumbed to the most desperate of steps, what the geeks amongst us refer to as RTFM (Read The F**king Manual). The fine print yielded the information that the Medicare definition of “skilled nursing care” includes specialized staff teaching us how to move Julie in a manner that causes her less pain than, say, having her bone marrow aspirated, an audit of potential danger spots in the house, and occupational therapy to help to become more independent in dressing herself, eating without being fed, etc. When I contacted the local Home Health folks, it became clear, in fact, that they assumed that I just wasn’t clear in explaining Julie’s needs because “all this stuff is covered — all you have to do is tell the doctor.”

On a considerably happier note, both Julie’s mother and my mother (AKA Da Momz) are staying with us and have proven incredibly helpful, not only taking care of many tasks (e.g., grocery shopping, pharmacy runs, transporting Da Boyz to doctor’s appointments, and so forth) but also being always available to buoy Julie’s spirits and, consequently, mine. The drawbacks to having both maternal figures in-house are manageable (it will no doubt be reassuring, for example, to have enough victuals on our Thanksgiving table to feed McHenry County for the first three months of 2000 if the Y2K event wipes out all food transportation and production).

Julie’s sister and her family are arriving later this morning for a one-day stay. Julie’s improvement, alas, does have a dark side since she now has the increased perception necessary to notice signs of impending squalor and the enhanced psychological energy to nag me into making the place presentable to her visitors. So, I need to change from my candy striper’s uniform into my maid’s outfit.

— Allan

Julie’s Story

Next Installment: The Hospital Epistles: March – April 1999
Previous Installment: Uncompromising Faith, Unremitting Hope, Unyielding Love
First Installment Of Julie’s Story: This Is How A Love Story Began

For more information about Julie Showalter and her writings as well as instructions for finding all of the Julie’s Story posts and downloading a PDF version of all the posts comprising Julie’s Story, go to Julie Showalter FAQ.

  1. Julie Showalter was the fiercely intelligent, sexy, and loving woman and prize-winning author, with whom I had a outrageously wonderful 20 year marriage that ended with her death in late 1999 from cancer diagnosed the week of our wedding nearly 20 years earlier. Many posts on this blog are about her, our unlikely romance, and our life together, and still others consist of her writings. Information can be found at Julie Showalter FAQ. []
  2. Uncompromising Faith, Unremitting Hope, Unyielding Love and The Hospital Epistles: May 1998 []
  3. This effort was successful and, at least at that time in our Medicare jurisdiction, unique. The Hospice workers proved to be as close to angels as anything I expect to find in this life. []

0 Responses to Julie – November 21, 1999 Status Report

  1. I still remember bits and pieces of such notes vividly (Dr. Cereberus, the Hospice issue, the last paragraph) – I’m almost suprised at how familiar they are – apparently indelible, though I haven’t seen them in years.

  2. Wonderful post, HOAG.
    I know a couple of people I’ll be forwarding this post to. I wish every “consumer” (!) of the health system had your knowledge and ability to advocate for the patient.

    Wrestling with dentists and orthodontists myself, which is small stuff in comparison.