“My mother was…adamant about not having life-extending measures at her life’s end, let everyone know her wishes, and carried her living will in her purse. But when she had a heart attack and stroke in Stuart, Fla., the emergency room hooked her up to several machines, eventually transporting her to a respiratory care center which kept her on life support for 25 weeks until her 6 million dollar supplemental insurance ran out. On oxygen from the start, initially she scrawled, “PLEASE let me die” before they amputated both her gangrenous legs and hooked her up to even more machines. At the respiratory care center in Ft Lauderdale, nurses suggested to me that I invest in that center, as they did, because it was making heaps of money…”
This tragic tale is among 675 (and counting) stories and comments posted online following Sunday’s New York Times Op-Ed piece by physician Ira Byock, “Dying Shouldn’t be so Brutal”. The tales of loved ones betrayed by a system that at best, loses its way surrounding end of life care, or worst, profits through overtreatment, are brutal. Just as palpable is the terror of those approaching their senior years with eyes wide open: “I pray that I will have a few days or hours in which to recognize that the slide into this inferno is starting. I pray that by then I will have the house emptied out, my affairs in order, a bottle of just the right pills nearby, and the courage to take them.”
Says Bayock: “Our health care system is well honed to fight disease, but poorly designed to meet the basic safety needs of seriously ill patients and their families. We can do both. We must.”
Amen. I have been with a family member living with stage four cancer, watching through drifting snow as the birds jostle for a space at the feeder, both of us petting her beloved cat, curled up on the pillow next to her. Gripping her hand as she rides intense pain, laughing at a movie. These moments of normalcy, peace and yes–joy–are priceless.
IMHO, we should reverse-engineer all of medical treatment to reflect the hospice model, where respect for personal preferences, shared decision-making, dignity and humanity are the framework for every serious medical intervention. Why don’t we? In his Op-Ed, Byock hits the nail on the head: “…Missing is the visible, vocal citizen-consumer demand. Without it, large-scale change will not happen.”
The non-profit Patient Voice Institute was founded to change that– to gather every patient/family voice in health care and make it count toward change. It involves giving patients a forum to make these stories and wishes count; training on both sides of the privacy curtain to maximize communication and impact; and advocacy: that “citizen/consumer demand” Byock refers to.
Clinicians, Organizations, Leaders, Insurers, Employers and Researchers – routinely have seats at the health care policy table; they tend to be well versed in broad health care issues and perspectives shared among their own stakeholder type. They’re backed by dedicated groups who provide training and support to ensure that their stakeholder voice is heard. Of course they play important roles in health care. However, “Patients and Families” is a unique stakeholder type, in that it represents fully half the “partnership” in any true engagement with patients.
Whether in sports, business or health care, how can we achieve great heights of success while relying on (and providing training and support to) only half the team?
