You don’t have to like it, but let’s not call it a death panel

Maybe the heat and the debt negotiations are getting to me, but I felt my blood pressure rise this week when I saw the reports on the new efforts to repeal the Independent Payment Advisory Board (IPAB). Following the back-to-back House hearings on IPAB, media reports, blogs and transcripts from various Hill events were calling attention to claims by some members of Congress and pundits that IPAB was really an acronym for death panel. Seriously – that, again?

IPAB, passed as part of health care reform in the Accountable Care Act, is, or will eventually be, the new government agency tasked with reducing the rate of growth in Medicare without affecting coverage or quality.

For the record, NHPCO does not support IPAB, and we engaged in efforts to remove the Board from the final health care bill. I’m not going to debate the merits of IPAB’s existence here. But, let’s be clear about one thing: IPAB is not a rationing panel and it is certainly not a death panel. In fact, the ACA specifically prohibits IPAB from rationing care. So why are physicians in Congress saying that IPAB will cause seniors to die?

Maybe there is some real strategy behind this tactic. The last time that particular phrasing was thrown about alongside the term ‘rationing,’ the Administration abandoned something we did support: Medicare reimbursement for voluntary advance care planning consultations. We’ve been here before and the hospice community knows all too well the costs of such scare tactics. The previous iteration of this particular brand of fighting left Medicare beneficiaries afraid to talk to their doctors about their end-of-life wishes for fear that some panel of government bureaucrats would ultimately decide whether they lived or died.

Although the Board is not supposed to produce recommendations until 2014, there are already many working against its very creation, not to mention its effectiveness. Not only does the Administration seem to be in no hurry to set up IPAB and take on another high profile health care battle, but who would want to serve on it and go through the Senate confirmation process? At the same time, pretty much every health care provider group and quite a few consumer groups are lining up and lobbying for its repeal. And with a few Democrats who votes for health reform starting to call for its repeal, maybe it is safe to say that IPAB is currently on uncertain ground.

But, if there is ground to be gained in weakening or even eliminating IPAB, let’s debate that on the policy merits. Whatever our views on IPAB, we have to resist the urge to engage in such dangerous rhetoric. At this rate, we have no idea what portion of health reform will be the next political bogeyman – – but, let’s hope this is the last we’ll hear of death panels.

Dr. Kevorkian was the Question, not the Answer

When my maternal grandmother developed Alzheimer’s disease I watched her suffer under the care of a medical system that prescribed powerful drugs liberally and incorrectly. I watched as her moods, her health, stability and mind fluctuated and seemed to melt away. She was medicated to the point of uncontrollable physical illness and exhaustion. It was not until she entered hospice care that she was relieved of her pain, attended to with compassion and was able to pass away peacefully.

When my paternal grandmother developed Alzheimer’s disease I watched her fade into herself and become more child-like every day. She stopped speaking and could not recognize me. She forgot her children and her life. Now, in hospice care, she does not struggle to remember or try to find the words. We can visit without hurting for the lifetime of memories that she does not have because at least she is calm and at rest.

I am a supporter of hospice and palliative care because it is real to me and it is right. I knew who Dr. Kevorkian was long before I had heard of hospice. I knew that he was a sensationalist, a zealot and a criminal, and I didn’t think he was wrong.

He helped people who were in chronic and disabling pain end their lives and their suffering. It was Dr. Kevorkian who first made me think, what would I do if I could no longer stand to be alive because of an illness? I would not go to a hospital to be put through torturous “healing” just to keep my heart and lungs pumping. I would not commit suicide. But, I would not want to call on “Dr. Death” and his machine either. So, what options are there? What rights do we have at the end of our lives?

It seems that Dr. Kevorkian brought the conversation about appropriate care for the terminally ill and dying to the table for a lot of people. He reminded me that appropriate care for the terminally ill, in most cases, means relief from suffering.

I do not think, however, he was the poster child for end-of-life care. Hospice care existed before Kevorkian, and the Medicare Hospice Benefit existed for eight years before Kevorkian’s first publicity stunt, when he aired a video of his assisting in the death of a patient in 1990.

Dr. Death put on a show and pointed the national spotlight on the rights of the terminally ill. His legacy is in his passion and very public activism. He made us think about how we would like our loved ones, our parents, ourselves and our children to be cared for in the most painful of circumstances. He did not put end-of-life care on the map. But, he led many of us to think about it.

In the end, Kevorkian’s presence – his life and his death – did not directly benefit my grandmothers’ suffering. His work did not influence my family’s decisions in choosing a hospice program or when meeting with the nurses who cared for my grandmothers. To me, Kevorkian did and still does represent a question. That question could be, what are my rights? It could be, what choice do I have? Or, is there relief?

Those questions that he represents have an answer. The answer is available and accessible and is a movement that has come out of compassion, volunteerism and the freedom to choose. For my grandmothers, for my mom and dad, and for my children, the answer has and will be hospice. For me, the answer to all of those questions is hospice. And to me, hospice is right.