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.

Comments

[ewoman]

Dear Ms. Fuller - you eloquently presented the importance of end-of-life counseling and the relevance that hospices play today in creating a CHOICE of environments for the living as well as for the terminally ill. I had an experience with the same not far from you - in Iron Gate. The hospice care workers were incredibly supportive, understanding and educated on the death process. Between their support and the documents prepared in advance, we all were able to accept the death of our loved one as she wished it.

I would state, though, that any person can make a living will at any time, and this living will can be altered at any time. It is not a substitute for a will that documents beneficiaries (although that document also needs updating over the decades). Additionally, a living will is not so much about how a person wants to die, but it also opens the door to what that person may want to happen to remain living if possible.

[Nightngle]

Excellent article - thank you! I do worry, though, that the intensity of this debate and the fear that so many people have of death will lead to a reduction in people using hospice. Some of the most vocal people in the Terry Schiavo case were right-to-lifer's who want to use end of life issues as a stepping stone to tougher regulations against access to abortion.

It is a person's choice whether they want to pursure curative/aggressive treatment at the end of their days, or to die peacefully surrounded by family and friends. I worry that those who are so radcial, that have been so enraged by the lies, will try to take the hospice option away from those of us who would make a choice different from theirs.

[Jeanette Fuller]

Some people associate hospice with an organization that emphasizes the right to die ideology. The majority of those who seek hospice do so because they have already been told their disease has entered a terminal stage. At this stage in a terminal illness, as I described in my post, the organs in the body simply cannot maintain homeostasis, and the waste products in the body begin to overload the kidneys and the liver.

Some people truly believe in miracles. They believe in their hearts that God will intervene and save someone, and that to put aside this hope is to recant their faith. Although this approach to faith in God seems counter-intuitive to my Christian belief system (where heaven is a better place than this earthly realm, and therefore to be welcomed at the end of life), I do recognize that many uphold this form of faith. How best to discuss these differences of opinions is the priority question, but one which must be answered, or, as you pointed out, the option of hospice might be removed from the table, and that troubles me deeply. If a miracle were to happen, would the absence of a feeding tube, breathing tube and IV preclude it from happening? I think not, nor do I think the temporary, unnatural extension to life they provide will encourage a miracle, or send a message to God that we are more faithful for having imposed them upon the dying.

[RRanch]

My brother died in Hospice at the VA in Palo Alto, CA. The care givers there were very caring and compassionate. I was able to spend his couple of months with his wife and children, I was fortunate as I had retired and could spend the time.

Thank you for this.

[Jeanette Fuller]

And for this reason, hospice must continue to be made available to those wish to remain close to their families during this very intimidate moment. You are welcome.

[PlaceboStudman]

While I can appreciate the tugging of emotional heart strings with personal anecdotes, the most convincing argument for me is to look at the facts. And, the fact is, not everyone is going to live into their 80's or 90's, (Terri Schiavo was in her 30s), and die peacefully in their sleep. Of those who do not live to be 80 or 90 and die peacefully in their sleep, there will be a certain number of them who will be diagnosed with a chronic, critical disease, which may include a symptom of chronic excruciating pain. Of those who suffer from chronic debilitating pain and/or paralysis, a certain percentage of those are going to choose to take their own life.

Now, I don't know about anyone else, but if someone is going to take their own life regardless of any means of intervention, I would certainly much rather have them do it with the advice of a counselor and family and friends, also known as The Dreaded Death Panel, rather than alone to be found by a loved one(s) who is traumatized for life

[Jeanette Fuller]

While I fully appreciate your comments, I would like to point out that hospice (as far as my personal experience and research have noted), is not associated with programs offering assisted suicide. Hospice does not speed the process of dying. It merely serves to lesson the discomfort associated with it. No two individuals will experience death in the same way. The counselors do not coach family members to intervene in the process. The pain medicine provided does not cause death. There is no death panel. On the contrary, the patient can choose to end hospice and take up a recitative treatment plan at any time. Hospice is offered to those individuals whose bodies are shutting down, and whose only options for continued life would create artificial life sustaining conditions. Hospice does not occur after the feeding tubes and heart and lung machines are hooked up, but before when the patient still has the option to choose not to be artificially sustained. A Do Not Resuscitate (DNR) directive should not be confused with a request for an assisted suicide.

[resalt]

Thank you for such a moving description of genuine end of life care. These are the facts people need to know to understand what HR3200 is about. I don't understand how a minister, Mr. Huckabee, can participate in deluding the American public by stirring base fears in the uninformed. We need more people like you to stand up and spell out the truth. I hope Huckabee reads your description. Please be sure to email your post to him. RS

[klo]

Thank you for this. My dad died in Hospice. A great place in NY is Mt Calvary in the Bronx. I can't imagine what we would have done without their help.
That's what a consultation allows. It allows the patient and their family to know their options and to make decisions before things get to the end.
It's unfortunate that many who oppose such consultations, who would benefit from them in trying times, don't understand their intention
And it's unfortunate that our elected officials are willing to fan a flame that should never have been a spark.

[Jeanette Fuller]

Thank you. These comments compel me to continue to find ways to clarify the misunderstandings of some, and oppose the outright manipulation of others who are using this issue to fight health care reform. I encourage you to share your story as you are able knowing that there are many of us who do so with you. The health insurance system seeks to forestall reform of current laws (public health service act, federal tax codes, social security act, among others), by redirecting peoples anger and frustration to issues not related to the underlying problem. Not only does this slow down the process of health care reform, but threatens the existence of programs that have provided ease and comfort to so many who have sat at the bedside of loved ones who are dying as well as to the dying themselves. Support Congressmen and women who support hospice, and health care reform. If they do not, tell them your story, and remind them that whomever is voted into office, can be voted out of office. We must believe in our powers as citizens.

[larry278]

There are retired people who would appreciate the counselling your father & his family [you & your siblings & partners] received. Younger people with terminal conditions might appreciate such counselling. Life on earth itself is also a terminal condition. You who survive us aren't going to be freed of your concerns when we die. Many of us wish that our children survive & thrive after we die.

[Jeanette Fuller]

Your comment is so beautiful. My father truly believed he would pass before his wife, my stepmother. He was devastated when she died of a heart attack suffered after heart surgery. All of his life, he had defined the terms of his existence, but death, he came to realize was non negotiable. Sometimes you don't get the chance to say goodbye, but if he did get that chance, he wanted to set the terms. He didn't end his life prematurely. He fought for as long as he had the funding and the physical means. I will never forget his gift to me and my brothers. His bravery and planning provided three weeks in which to say our goodbyes. We talked, laughed, cried and made amends. All the things some people taken quickly never get to experience. This was grace. I have never felt so close to God as I did the day my father went to be with Him. I will never be as far away again. Thank you so much.

[usna73]

Jeanette, thank you for your brave story. I helped my father under similar circumstances. My dad had lived to almost 82, so he was quite prepared for his death. He survived cancer surgery at 75.

You did all the right things.

My dad was a hero, first in WWII and always to me. His death was handled the same way.

Courage is what follows the emotion of fear.

May your father's spirit live on in you forever.

[Jeanette Fuller]

And may yours as well. Thank you. It is true that your greatest heroes are often those closest to you.