My mother was 93 years old and legally blind when she was diagnosed with large granular lymphocytic leukemia (LGLL), or a type of T-cell leukemia. LGLL is a slow-growing T-cell leukemia, more common in women than in men. The condition can go into remission with drug therapy for younger individuals who can tolerate immunosuppressive therapy. At 93, aggressive therapies such as chemotherapy or stem cell transplants weren’t an option, but Medicare would pay for blood transfusions when her hemoglobin dropped below normal range. The Leukemia and Lymphoma Society says normal hemoglobin range for a healthy woman is 12-16. Her physician care team monitored this condition by regularly checking blood cell counts and her vitals to determine whether the disease was stable or worsening. In addition to LGLL, Mom also had congestive heart failure, glaucoma, macular degeneration, bad knees, and a vow to pray for the people she loved. An amazing soul.
For years, she promised she would come and live with us, only to corral people in the church to call me with promises that they would care for her if I wouldn’t move her away from them. Lovingly, they took her to church, to the senior center, to the grocery store, and once a week, they took her to her local physician three blocks away to draw blood and test her hemoglobin levels.
Her oncologist, 45 miles away in Kansas City, coordinated care with her primary care provider where she lived in northern Missouri. The plan was that the local physician would do a blood draw, LabCorp would pick up samples, run the tests, then fax results to both the local doc and the oncologist simultaneously. For those of you caring for a loved one with cancer, you know the oncologist becomes the primary care provider. His job was to send orders if needed, to the family doctor. The plan worked only if both clinicians read the faxed results. In Mom’s case, this seemingly simple solution was the anchor to whether she would live or die.
Today, computerized patient charting makes it easier to alert physicians electronically when results reach “panic” value. But at the time, the local doc wouldn’t adopt computers and the oncologist was caught up in the transition to electronic charting, so it was pretty easy for Mom’s results to fall between the cracks.
Her hemoglobin would fall to 7, then 6 -then 5, which is painful and close to end of life – when she would call for help. An ambulance would rush to the home, transport her to the local community hospital one mile from her home to stabilize her, then another 45 miles to Liberty Hospital where doctors would admit her in ICU for 7 days at an average cost of $45,000. Had the oncologist read the faxed lab values, he could have ordered a blood transfusion from the local hospital that would have cost about $700.
As her primary and legal long distance caregiver, I would jump on a plane, rush to the hospital to be at her side during the stay, and then also stay with her for weeks after she returned home to ensure the medical team could be more proactive in her care. Sometimes my brother, Steve’s turn would come up. He would be there as well to care for her. I’m ashamed to say her care dropped between the cracks three times before I discovered how to intervene.
My mom and I both knew the outcome of her leukemia. My brother, Mom and I looked forward to being with our family in heaven, but as long as she wasn’t ready to meet her Lord, I would fight for her and the healthcare she deserved.
While I’m not a doctor, I do know medical technology really well, and I can also tell when 12 drops to an 8 and then trends down to a 7. As the legal caregiver, I injected myself in the lab process by insisting that all lab results be faxed to me at the same time they were faxed to both primary care doc and oncologist. I had to remind both physicians that I held health power of attorney for her, and also remind them that that power of attorney was part of her medical chart.
I also downloaded two cool mobile apps: LabGear , a pocket tool that helps clinicians understand lab values, and My Chart, the patient portal attached to the oncologist’s computer system. In signing Mom up for this patient portal, I also asked Mom to assign me as proxy so that I could access her patient portal. We talk more about patient portals in The Caregiver’s Toolbox. The short version is that every time the physician saw my mom, a new record was downloaded into her computerized medical chart that I also could access.
In my mind, intervention is the single most important role caregivers play in health care. My own panic set in when I received faxed reports that her hemoglobin was trending down from 8 to 7.5 to 6.0 and no physician had ordered a blood transfusion.
I not only had evidence to convince her she needed full time skilled nursing, but I also was on the phone the day her lab results hit 5.5, demanding immediate care. And a few inspiring words for the physician team. Since she wouldn’t come and live with me, my airfare costs were piling up to ridiculous amounts. If you are a long distance caregiver, you and your pocketbook knows how that feels. Whether you are 30 minutes or 15 hours away, you also can access the same tools I did.
You can find LabGear app in iTunes for free and on Google Play for $2.99. Those of you who follow my blogs know that I am passionate about everyone signing up for a patient portal. Doctors get credit for each patient who signs up and even more incentives if you communicate with them using the portal. Patient portals are tethered to your doctor’s electronic charting system. So if you haven’t signed up yet, you are missing out on some critical pieces of information. Your doctor can provide you with sign up forms.
Mom’s in heaven, celebrating the great healer now, and I cannot say enough about consumer tools that helped me intervene in her care: the patient portal, my electronic fax line, and LabGear. We talk about these in The Caregiver’s Toolbox. The book is available at all online booksellers in ebook and paperback formats.
If you have a cool tool you’ve used in caregiving, I’d love to hear about it.