Letter: Bill supports biomarker testing
This letter originally ran in the Lincoln Journal Star.
News
Quality of Life Call to Action
July 1, 2009
As the leading patient voice in the health care reform debate, ACS CAN has issued a call to action to advance legislation that transforms the current sick care system to one that is more patient-centered to better address prevention, access to care, and quality of life. As ACS CAN staff, this call to action is professional to be sure. But itÈs also very personal.
[caption id="attachment_319" align="alignleft" width="98" caption="Eric and Rebecca"]
[/caption]
My brother Eric was diagnosed last year with advanced lung cancer that had spread to his brain. We knew his prognosis was grim, but he was intent to fight and endured daily radiation to his chest and head and weekly chemotherapy to within an inch of his life. With advanced cancer, the treatment can sometimes leave you feeling worse than the disease.
I was confident we could make him feel better even though he was not likely going to get better. He was a 47 year old insured male with two devoted caregiver daughters in their early 20Ès determined to keep him comfortable, and he had an informed sister who was hotwired to all sorts of specialists. But his oncology team was not well-equipped to treat EricÈs pain or the range of other issues associated with his treatment, instead simply giving him higher and higher doses of medication that wasnÈt working. Nor was it ever mentioned in the course of his treatment that palliative care to assist with his quality of life needs was an option. Instead, there were trips to the emergency room because of uncontrolled pain and treatment side effects, and no continuity of care.
We declined the oncology departmentÈs recommendation to pursue a third line of chemo treatment, and instead the whole family brought Eric to our longtime family vacation spot on the Carolina shore. EricÈs disease progressed quickly when we returned from the beach, as we suspected it would. The cancer had spread into his bones and everywhere else. We knew this by looking at him, but his oncologists insisted on a PET scan to punctuate the point. That scan took place just days before he died. He was admitted to the hospital through the ER on September 2, in severe distress from excruciating pain and difficulty breathing. He died the very next night the end to a seven month battle that did not come fast enough and yet didnÈt give us enough time.
EricÈs cancer, and indeed his cancer care, caused suffering that no person should ever bear and no parents, siblings or children should ever watch. Never during his treatment was a palliative care referral recommended as an option for Eric to help relieve his symptoms and help address his daughtersÈ concerns about caring for him at home. It is one thing for families to feel powerless because the cancer fighting options are limited; but it is quite another when the healthcare system leaves families helpless because the knowledge we have about providing comfort is not being used in every patient at every bedside.
I am comforted and proud that ACS CAN is providing critically important leadership in health care reform to promote understanding about palliative care and its role in maintaining quality of life. ACS CAN serves as the vehicle for getting patient stories heard to help motivate necessary policy change so we can refocus our sick care system on the fundamental medical tenet of curing when we can, and providing comfort always.
Submitted by Rebecca K, ACS CAN