Volume 1, Issue 8

On May 5, 2009, my father was diagnosed with Stage Four Lung cancer. His doctors informed us that the cancer had spread to his lymph nodes and would likely (if not already) spread to his brain. He was not a particularly good candidate for surgery due to his heart condition; radiation was not a viable option given the advance stage of the cancer; therefore chemotherapy was really the only option aggressive enough to have some impact, though it was unlikely to extend his life beyond six months. In other words, at 70 years old, my father was not likely to see his 71^st birthday; nor was he likely to spend any of his remaining months in comfort. His choices were essentially to begin hospice care and embark on the final leg of his life’s journey with dignity, while at home surrounded by his family or to face a series of excruciating cancer treatments that would render the quality of his life intolerable. He chose the former. His choice was made possible by having end-of-life counseling available to him; it wasn’t taken away from him by “death panels” determining that 70 year old cancer patients with a 10-year history of congenital heart failure aren’t worthy of living any longer. My father never reached 71 years old; he died June 24, 2009—at home, in his own bed.

The current debate going on in town hall meetings across the country have been highjacked by people who are too ignorant to realize that they are too ignorant of the details of the proposed legislation to have an opinion worthy of sharing in a public forum. I understand the inherent distrust of the government as much as anyone does; after all, I was raised in Berkeley California. However, hysteria and uncivil disobedience do not and will not prevent each and every one of us to from potentially needing information about end-of-life healthcare options. Whether we are making decisions for ourselves or for loved ones, we need to have control over how we will live and die so that we are not forced to live (or die) in a manner that is unpalatable to us.

When I reflect on the Terri Schiavo case in 2005, I recall being horrified that her family was thrust into the public spotlight at a time and place as intimate as her deathbed. The government felt compelled to step in and forbid her husband from making decisions on her behalf, in spite of Terri’s 20 years in a persistent vegetative state. The battle over Terri’s wishes, her husband’s interpretation of those wishes, her parent’s objections and the government’s policy-making agenda converged to create a debacle that reignited wrangling over a patient’s “right to die” and the pro-choice/pro-life discord. [Frankly, pro-life is a term that should be stricken from our lexicon as it is repeatedly abused by those on the political right to express a selfish and inexplicable desire to drag out life beyond the bounds of God’s will and/or what the person would or has directed for themselves.]

Had my father not made his wishes painfully clear he might still be here today, lingering around in a virtual coma because my family might have held out hope against hope that a cure for cancer was imminent. In our right minds we know that is impossible. But that is exactly the problem: when you are facing the final phase of your life or when a loved one is terminal and requires your decision making we are not necessarily in our right minds. In fact, we quite often are absolutely beside ourselves with grief and unable to consider the various aspects of the choices we need to make. My father’s advance directives made his wishes crystal clear to everyone around him. And they were respected and followed. With information come options. Without information, we are at the mercy of those surrounding us who may or may not take our best interests into consideration.

In 2005, my nephew died a few hours after an auto accident. My sister and I were driving on the same road as him and were, therefore, with him at the hospital in his final hours. He was kept alive on a ventilator for a short period of time enabling my sister (his mother) a few final moments to say goodbye and to make any organ donor decisions necessary. Had he been alone when he had the accident there would have been no family member available to make those decisions on his behalf and the decisions would have been made by established hospital protocol and insurance companies. You don’t have to be a senior to put your end-of life choices in writing and for them to take legal precedence should the need arise, and counseling helps you understand the salient points to be considered regardless of your life circumstances.

I had a cousin who died in 1994, following his own battle with a terminal illness. As he watched others helplessly succumb to the same illness, he chose to avoid their same fate. His preference was to forgo further treatment and die with dignity at his own home surrounded by family and friends. When he made his decision to stop receiving his thrice-weekly dialysis treatments, doctors and therapists descended on him faster than you could blink. They gave him end-of-life counseling in an attempt to ensure that his decision was sound and based on information, not misinformation.

The doctors and counselors who advised my cousin did not constitute a death panel, charged with the task of ensuring that he opted for death because his life was worth less than someone who was healthy. These were health care professionals who have sworn an oath to first, “never do harm.” To intimate that helping a patient navigate their end-of-life choices is anything other than humane and responsible, is a travesty being perpetuated by the most despicable politicians and gluttonous insurers who, unfortunately, have such little regard for their audience that they manipulate them into doing their bidding for them. The real travesty is that those out there disrupting town hall meetings are doing so against their own best interests. They just don’t understand how much their ignorance is being exploited to make the case for big insurers who stand to lose billions when (not if) legislation reforming healthcare is signed into law. The manipulation is rampant and we will all pay the price.

The evisceration of the only solid piece of legislation that we have to discuss right now (H.R.3200) is bordering on criminal. Hyperbolic statements have been spewed in blatant disregard of the truth. Words and phrases have been cherry-picked and taken out of context by the political right in an effort to misguide the masses into believing that thoughtful and logical discussion about healthcare will lead to our government seizing socialist control over the country in an all-out bid for domination in some new world order. They seem to believe that “healthcare for all” is code for sneaking a foot in the door in preparation for all the evils that government will soon impose on its citizens. This is presumably for the advancement of some nefarious objectives, not yet revealed by the current administration’s opponents. This is all nonsense, but continues unchecked and unpunished.

Dr. Ezekiel Emmanuel, who serves as a healthcare advisor to our president has now been dragged into the fray as a result of some of his published writings. Healthcare “non-reformists” seeking political ammunition have identified some of the statements written in the context of research and evidence-based healthcare have taken a few words and extrapolated that Dr. Emmanuel wants to euthanize the sick and elderly to reallocate the monies that might have otherwise been used for their care. That is a distorted misrepresentation of the truth at best and probably libelous and possibly lethal at worst.

It is unfortunate that people do not understand the work of researchers. Years of case studies, hypotheses, comparative analysis, methodologies and cross-referencing of others’ bodies of work and findings are vigilantly dissected to construct healthcare studies that don’t necessarily render pleasant results. Dr. Emmanuel’s work isn’t delivered in pithy sound bites, but rather in the form of carefully measured, thorough scientific treatises for the express purpose of advancing scientific discourse in the disciplines of oncology and palliative care. It is downright perverse and reckless to contort the words of Dr. Emmanuel for harmful political gain. Yet, that is exactly what television entertainers and several republican elected officials continue to do in their constant drumbeat of fear and paranoia designed to incite their audience and constituents to perform their desired behaviors. I suggest it is time to stop.

In my lifetime, I never thought I would hear anyone say that they wished healthcare companies could make more profit. And until last week I hadn’t. The people attending these town hall meetings are not a microcosm of American society bringing legitimate questions and demands for answers about the details of an admittedly confusing bill. No. These people have been fed a constant diet of insanity and are being manipulated by those who stand to gain financially from the defeat of any legislation to make healthcare more accessible and affordable for all Americans.

What is most unfortunate is the blatant hypocrisy of those firmly entrenched on the right end of the political spectrum, many of whom have a public record of supporting various items listed in this bill. For instance Georgia Senator Johnny Isakson authored legislation to make end-of-life consultations funded by Medicare; and former-governor Sarah Palin, signed a proclamation making April 16, 2008, her state’s Healthcare Decisions Day, thus endorsing end-of-life counseling. Now, for no apparent reason, they (and others) are disassociating themselves from their very own wise and humane practices that they once sought and supported. We can only surmise that their perceived recompense is greater than the respect (and votes) of the millions of Americans who would benefit from legislation that made comprehensive healthcare easier for all to obtain.

Everyone should consider having a signed (and notarized) advance directive, living will and/or durable power of attorney. Whether you expect your life to end imminently due to failing health or advanced age or whether the circumstances are unexpected such as a catastrophic accident or act of nature, letting your family and medical caregivers know your wishes is smart business. Will our government begin to practice smart business? Only time will tell.