10/17/2009 05:12 am ET Updated Nov 17, 2011

The Truth About End of Life Care

So far I have chosen not to directly address the repeated accusations of right wing, conservatives that President Obama and Progressive Democrats support "death care", "death panels", euthanasia or any number of other words and phrases meant to arouse fear in citizens.

What comment by whom has finally drawn me out? Mr. Mike Huckabee has chosen to join Sarah Palin and others in attacking "End of Life Counseling" and twisted it into some sick form of "death panels." These accusations, ridiculous and without merit, threaten to place an undeserved black mark on a program that has provided comfort to and assuaged the fears of thousands of Americans who have had the misfortune of losing a loved one to a terminal illness.

The infamous page 425. What does it mean? What does it propose to do?

First here is the link to H.R. 3200.

This is the house version of what has now been titled the "America's Affordable Health Choices Act of 2009." A similar version of this bill has been introduced in the Senate.

The section of H.R. 3200, much maligned by some right wingers, SEC. 1233., is Titled "ADVANCE CARE PLANNING CONSULTATION." So much has been said by those who claim to understand what "end of life care" means, and all of it has little if any root in truth.

I will give you my personal experience with "end of life counseling." I hope it helps to clarify the importance of such counseling, and dispels the myths and fears surrounding this section of the bill.

My father was diagnosed with esophageal cancer on October 14th. For many months, my brothers and I hoped with all our might that my father would have the edge on this disease. As many of you know, my partner and I joined my father in Lynchburg,and even as we celebrated the inauguration of our 44th President, we clung to the belief that my father would beat the cancer. He was so strong, so viking, so seemingly indestructable.

Cancer does not respect genealogy. It cares not for the form and function of DNA and RNA as it was intended to exist at conception. It invades the cell, manipulates the RNA, reorganizes the organic factory, and reforms it to serve its own needs. Organs that were intended to live for decades, succumb to a lesser life span. The affected cells grow and multiply destroying the delicate homeostatic balance of life.

Chemotherapy, radiation, proper diet and other treatments are all attempts to counteract the growth of cancer, but sometimes, no matter how hard science tries to intervene, cancer wins, vital organs are crowded out. The body tries to protect itself by accumulating fluid putting further pressure on the organs. Eventually the body cannot maintain the balance of life. The heart, the lungs, kidneys all begin to wear themselves out in an attempt to adjust.

My father called me on a frosty day in early February. I sat in my office as he told me that his doctor had informed him his cancer had gone terminal. His body could not cope. The chemo could no longer stop the cancer. He was dying.
I collapsed in a heap, and I wept. I allowed myself to grieve. Then, as my father lived, so went I and every moment thereafter was dedicated to his wishes.

My father drew up a living will. My step brother served as his executor. All of his children were given copies of his will. In this will he stated that he did not wish to be revived should his heart fail him. He inserted in his will a DNR (do not resuscitate) clause. He did not want to be kept alive through artificial means after his brain had ceased to function. Nor did he wish to have his body sustained artificially after it had lost its capacity for self sustenance: no feeding tubes, no I.V. drips.

Cancer is a nasty condition. As it progresses, its growth begins to redirect precious resources away from normal body functions to feed the growth of the tumor(s). As the cancer grew in my father's body, he grew thin. What nutrients he was able to take in were immediately absorbed my the cancer. Because the tumor pressed against the other organs of the body, fluids began to collect around his vital organs in an effort to protect them from the pressure much as a blister forms on a foot to protect it from damage. I watched my father deteriorate. For those who have witnessed this, I apologize with all my soul if I revive painful memories. I do so only because I do not wish to see future generations deprived of end of life counseling.

End of life counseling for our family consisted of several key parts.

1st - My father paid a lawyer to draw up a will laying out specific instructions to his executor and designated "caregivers" as to his final wishes. Having determined that his cancer was terminal, he did not wish to be resuscitated should his heart fail. A copy of this directive was kept on his person at all times. A copy was also registered at his hospital. End of life counseling would give people access to such wills.

2nd - My father elected to enroll in local Hospice care. His wish was to die at home under the care of a hospice nurse. Hospice provided him access to twenty four hour own call care, support for his caregivers, and would act as an intermediary with the funeral home at his death. H.R. 3200 would afford people the option of participating his hospice care.

3rd - My father arranged for his designated caregivers to participate in end of life counseling with hospice. The counselling was intended to prepare his family for his death.

End of life counseling. This phrase can raise fear in the hearts of those who have no experience with it, and comfort in the hearts of those who have benefited from its care. My father chose the care of hospice. He wanted to die in his own home on his own terms. It was his wish, and he had discussed his intentions with his family. He was lucky enough to have the financial resources to draw up a living will, and a family willing and able to be with him as he prepared to die.

It is one thing to say you are prepared to face the death of a loved one and quite another to face it. End of life counselling helped to prepare me for what I was about to face.

During the first day of counseling, my brothers and I met our hospice counselor. She explained to us the function of hospice, which was to provide the in home medical support my father would need to cope with the many symptoms and complications of end stage cancer. She explained in detail the various stages that might be expected at the end of my father's battle with cancer. We were given my father's emergency medications to be used only when his pain became unbearable. We were instructed in pain management. We were given a 24 hour number with which to reach on call nurses who would answer our questions. We were given literature to read to help us transition as our father transitioned from life to death.

Imagine if you will, a man capable of running 5 to 8 miles day, reduced to struggling for breath as he made his way to the bathroom. Imagine your brother, all five foot ten of his massive frame, trying to help his father off the toilet without breaking ribs. The literature we were given helped us overcome those obstacles. Everyday presented a new set of obstacles. Our counselor and nurses from hospice helped us through every step. This is end of life counseling. This is reality.

No one told us to cut cords, disconnect respirators, refuse my father food. When my father's body could no longer take food, the counseling helped us understand the biological mechanisms involved as his digestive system shut down. When my father could no longer take fluids, they showed us how to prepare little sponges dipped in ice water to wet his lips. The nurses helped ease the awful fear in my chest that I was not trying hard enough to ease his pain. When his pain became unbearable, they reassured us as we administered the painkillers, because there is no more nerve wracking worry than that you might give someone too much painkiller. And, during those final hours, the counseling helped me recognize the signs that my father was letting go. I understood the breathing patterns, the way my father appeared to speak with loved ones no longer with us, that he could hear us even if he could no longer respond outwardly to our words. We read from the Bible, played Frank Sinatra, talked to our father, and told him he could let go. Hospice volunteers called us frequently to ask if we needed help washing dishes, preparing a meal, all the little things you take for granted when all your time and attention is centered on your loved one.

Please forgive any pain I may inadvertantly caused to those who have suffered the death of someone close from a terminal illness, but I feel compelled to talk about my experiences because the comments of Mr. Huckabee, Mrs. Palin and others who threaten the future of what I consider to be a very important program. I cannot imagine facing my father's death without the help offered by hospice, and the end of life counseling it provided. Because my father planned for his death, because he had the finances to do so, my brothers and I were able to be with my father in his final hours. He enjoyed a peaceful passage from life to death on his terms, but I know that many in this country do not receive this gift. I had the unbelievable privilege of holding my father's hand as he drew his final breath. He was able to die in the house that he loved surrounded by the memories of his departed wife and the family he loved.

I want people to have access to this program who do not have the financial resources my father enjoyed. He would have wanted that for them. That H.R. 3200 provides others access to end of life counseling is amazing. That the political posturing surrounding this bill threatens to sour people's view of this program is appalling.

Emotions should compel us to rise above our stations in life to make life better for others. They should not drive us to deprive others of better care, and access to a better quality of life or even death.

Cross-posted from Celtic Diva's Blue Oasis.