A New Beginning at the End of Days
Although many think of dying when they think about hospice and palliative care, caregiving at the end-of-life has always really been about living ... living fully until death comes naturally of its own accord. If you've been at the bedside of the dying, you know how everything we do at that time is important. Whether we bring water, adjust the lighting, play music, give a back massage, help with personal care, it all makes a huge difference. Patients cannot live fully unless truly professional clinical services are provided.
Death, though, is something that doesn't need assistance. It comes to us all eventually. People at the end-of-life need assistance with their needs. It's that simple.
Some think dying needs a push, "assistance" to make it come sooner. They find dozens of ways to hasten death, imposing death on the unwilling in most cases. The so-called "choice" to be "assisted" to death is a fraud, as patients are made to be unconscious and then finished off without even asking permission. The problem with blind zealotry is that many thousands of patients can be victimized in the process, and have been. Safeguards never prevent misuse of such a power over life and death. Even government reports from European nations confirm that thousands of patients have been recently involuntarily put to death.
Yet, naive proponents of a "right to die" continue to ignore the numerous reports of involuntary, imposed deaths, medical killings, right here in the United States, in addition to those from Europe. They ignore the many readily available explanations why individuals with ulterior motives kill the vulnerable. The obvious opportunity for elder abuse to the extreme is not even mentioned. Their leaders are not so naive.
Barbara Coombs Lee, President of the right-to-kill organization, Compassion & Choices, is a former top executive at one of our nation's largest managed care organizations. Her current organization's efforts to trick the public into accepting the right-to-kill/"die" is a setup for corporate profiteering and government denial of care.
There is no real "compassion" and no "choice" in Compassion and Choices. The name is a con.
The government elites? Well, that's easy to explain: you can reduce expenditures, erasing billions of entitlement dollars when you erase many thousands of those individuals the Social Security, Medicare and Medicaid dollars were going to!
Proponents of what amounts to the right to kill, play on the fears of those who have shut themselves off from a part of life, who seek to control everything in their lives, who may not have the humility to accept the changes in life with grace and who do not have the sense of humor to recognize their own humanity, their imperfections and their commonality with all other human beings. Those who fight the realities of this life, also fight dying a natural death. Research shows that most individuals who seek "assisted" dying are really seeking to control how and when they die and avoid the natural loss of control that comes with dying.
A culture of death that promotes the right to die is based upon fear, upon a rejection of the purpose of life and the dying process. The culture of death rejects the universality of being born and of dying. Killing a patient or yourself sets you up as a "god," rejecting God's will in one's own life. Those who seek imposed death or who impose it upon others reject the idea that there is a purpose in life, in death, in suffering or enjoying the blessings God gives us.
The culture of life is based upon love and a recognition that there is a purpose to our life, and that purpose involves birth, life, the dying process, and everything in between. Patients overcome their sense of loss and develop a sense of humor about their own dependency, an acceptance of the reality that limits their function, and an appreciation for the loving care of others in their lives, whether family members or professional nurses, physicians and others. They know that just like you "can't fight City Hall," you can't fight death. They know that allowing themselves a natural death as a result of their terminal illness is not to be feared, but accepted when the time comes.
Mark Davis Pickup, a disabled man with advanced multiple sclerosis has found "Christian meaning in suffering" and has dedicated himself to affirming the principles of "faith, family, and sanctity of human life." He writes, "I am now convinced that if a society does not embrace the sanctity, dignity, and equality of all human life (and North American society does not) then any barbarity is possible."
It is clear that Mark recognizes that each person has his or her own purpose, and that the disabled and ailing are equally human, have equal rights under the law, and are equally deserving of our care and love. When we choose to devalue the life of any other, we move toward the devaluation of any life, including our own.
Without humility, dying, like living, is a constant struggle against the realities of life and the Lord's will. Without faith, that struggle intrudes upon the dying process, destroying the very purpose involved in both life and in dying: a reconciliation between man and his Creator, a relationship that Martin Buber described as "I" and "Thou" ... the constant flow of love back and forth between a person and the Person, the Giver of life, similar to the constant relationship between Tevye in Fiddler on the Roof and God.
It is not so much what Tevye says to God that is important, but that he is constantly saying something to God. He has opened his heart to allow himself to have the "I" - "Thou" relationship. Christians know this as the personal relationship with the dear Lord Jesus. Tevye complains about anything and everything and would certainly have complained about dying and all the indignities that can come with it. Yet, he also would have accepted them just the same and continued his relationship and discussion with the Lord till the very end. It was his form of prayer.
Life itself, and dying itself, is permeated with prayer when this life-affirming relationship is allowed. Like friends and lovers think of each other at all times, and their hearts join them each to the other, a person is joined to the Lord by accepting this relationship. For a person who is dying and has faith, and I've witnessed those who had faith approach death, dying became a beautiful thing, a sacred time, and a testimony to their faith as well as God's grace. This is something that those who do not share the mission of hospice, or faith, truly cannot understand or accept.
Those individuals who promote the right to die want to control everything that happens at the end-of-life, which is not possible.
The reality is that we cannot control everything about our dying, even where imposed death and/or assisted-killing is legal. Things do go wrong with assisted-death and imposed death. Lethal prescriptions have been known to simply not do the job, and then a physician has to step in and finish the patient off, sometimes after terrible suffering caused by the lethal medication itself. Dying by lethal medication is not as pretty as proponents paint it.
If it wasn't so, why do many protest at prison executions objecting to the suffering caused by the medications used? Others protest executions, because they believe that even if the prisoner is guilty, killing is wrong. And others still protest capital punishment because they fear that an innocent person may be killed by mistake, and they don't wish to risk that horrific outcome.
Why is it that proponents of assisted-suicide, euthanasia and Third Way medical killing have no qualms about putting the wrong patient to death? ... someone who does not want to be "assisted" to death or euthanized outright? ... someone who doesn't want to be sedated to death?
Why is it "obviously ok" according to the "enlightened few" who are pushing this agenda from the very heights of the industry and government, to impose death on the disabled and elderly? Where do you think patients end up when treatment options for urgently needed care is denied under the new "cost effectiveness research" guidelines that already ration care for the elderly and disabled? "Cost effectiveness research" is not always about providing what is best for each patient, it's about managing costs with a calculated intention that some patients will wrongly be denied treatment, something equivalent to intended but necessary "collateral damage" in war.
Some people are going to be made to die. Government and corporate bureaucrats already know that. However, what if a patient who doesn't want to be die, is not terminal, is then medically killed? Obviously, they don't care; those who are sacrificed are, according to the elites, "necessary," acceptable, planned deaths.
Sedation together with morphine, or sedation by itself till death is accomplished, is common practice today in many hospice and palliative care centers, but what does this have to do with the mission of hospice and palliative care? Nothing! This practice, "terminal," "palliative" or "total" sedation is widely practiced as a Third Way of bypassing laws against euthanasia and/or assisted-suicide.
Continued on this widespread basis, the actual mission of hospice and palliative care is negated, resulting in the end of end-of-life care as it was known to the public and to those professionals who practice with integrity. When zealots and opportunists in the industry's leadership remove the foundation stone for the work being done, the entire program's validity is threatened. This is the reality in many, but not all, hospice and palliative care centers today.
While all of this is occurring, the National Hospice & Palliative Care Organization ("NHPCO") remains silent. The NHPCO, the legal and corporate successor to the Euthanasia Society of America, is widely involved in this trend so their silence is readily understandable. They are implementing their long-range plan to transform hospice and palliative care into a euthanasia-delivery system for thousands deemed unworthy of life. "Changing how Americans view dying" is already largely accomplished.
Changing how Americans die is what they are doing.
Any middle-school student knows how opportunists seized land from settlers and native Americans in their quest for vast wealth. Big landowners and bankers forced them off their land, to seize the land as an investment, because they were increasing the size of their ranches, or for the minerals, oil, gold, silver and other valuable rights, and they casually resorted to killing those who resolutely resisted their plans.
Many corporate owners and administrators of hospice chains are just the same, profiteers willing to sacrifice lives like cattle at the slaughterhouse, as they accumulate wealth for themselves. More for-profit corporations run hospice agencies today than non-profits. When some of the largest hospice corporations take in more than a billion dollars in revenue, isn't it obvious what their motivation is really about?
Running hospice and palliative care centers, whether nonprofit or for-profit, for the good of the dying and their families is the mission we serve. Running these services in order to exploit the dying and profit from their misuse is the antithesis of the mission; it is a modern-day monstrosity that every family in America may face at some time.
Years from now when the value of a life is widely recognized once more, when government officials actually care about enforcing the laws and do so, an investigation will reveal the equivalent of mass graves hidden within today's medical records: patients who had no terminal illness who were made to die, patients whose family stood to inherit large sums of money suddenly hauled off and "inexplicably" dead within days though death was not expected at all, administrators on the "take" who intentionally committed Medicare, Medicaid and insurance fraud while using dying patients to pad their own income.
We already know of some current top leaders at the NHPCO whose agencies have been found by the U.S. Justice Department to have submitted millions of dollars in fraudulent claims. I've heard from nurses working at Odyssey Hospice, (acquired by Gentiva Health Services) for example, who told me how patients were denied routine services. Is it no surprise that the industry is moving in this direction when such callous leaders run the show?
The end of end-of-life care as we expect it to be, is one of the most disturbing trends in American health care. It is the obvious result of the changes being made, though little is written about it at all. Yet, endings also represent an opportunity for the beginning of something new. When one thing ends, another begins.
Eventually, everything that lives dies, everything changes. Cycles repeat, generations come and go. Societal trends come and go. What was promoted in the past is replaced by something different. Though many hospice and palliative care leaders have returned to errors of the past, a time is coming when end-of-life care will be reformed. The expertise of professional clinicians will be sorely needed and the re-education of the staff throughout the industry will occur.
As each generation prepares to pass on, the younger generation recognizes that it is next. A change occurs. A recognition of our own mortality is unavoidable when we witness the ending of a patient or loved one's days. This recognition enables us to extend compassion for one whose journey here is ending, knowing that we also will face the same end one day.
Good end-of-life care professionals know that hastening death robs the dying of the new beginnings that are meant to be at the end-of-life. Hastening death is a violation of the glue that holds the family together, love. We can allow death, but we have no right to kill.
Whether seen and understood, or not recognized at all, government-encouraged and corporate-approved imposed death reduces the importance of the family bond while replacing it with an increased role for the federal government and those favored corporations. Imposed death is a step toward a type of fascism that rewards corporations that act as agents of the government while depriving the citizens of their lives.
Contrary to the sterile and cold decision making that goes into rationed care and certain, imposed death, we know that every family has its shared stories, its good times as well as conflicts, its secrets and its own pain. Each family member has his or her own relationship with the dying, whether loving or estranged, argumentative or supportive. Those who stayed away in the past, may have done so because visiting became too painful, but underneath it all, love remains. And part of the mission of end-of-life care is to facilitate the expression of that love.
Families are like a kaleidoscope of colors and light. Not one of them is exactly alike. Families have many similarities, because each family member shares in our common humanity. There is meaning in the lives of the living, the dying and meaning in how they are treated when they are dying. Meaning arises out of our spiritual nature, not out of the chemical composition of a body. And without meaning to our lives, there is also no significance to Elizabeth Kubler-Ross's insights into the subjective reality the dying confront.
Kubler-Ross's stages of grieving experienced by the dying, can only be fully processed when the dying are allowed time to live long enough to cope with the reality of impending death and to find new ways of relating to each member of their family at the end. Many professionals have witnessed the changes occurring in the patient and family, sometimes right before death comes in its own natural way. It is often at this point that awe-inspiring events occur, events that nurses and physicians alike speak about in moments of candor.
Some see a golden glow around the patient and feel a peaceful Presence in the room, the patient may speak to loved ones who have passed on before, and some have had visions of angels or the Lord. Those professionals who have also seen these things were not hallucinating due to metabolic changes at the end-of-life (the standard way skeptics explain away the visions the dying themselves have). Nor is it mass hypnosis (another way skeptics explain away what they cannot understand).
Something very real happens and the sanctity of life, strangely enough, is affirmed at the end-of-life. Otherwise, why would we care at all? We could toss the bodies of the dying on large mass graves with disdain like the Nazis did. Why do we object to their treatment of individuals if there is no meaning at all to life, no sanctity of life, no significance to dying or death? However, because we do object to what they did, then deep inside most of us really do know that there is great meaning to all of these, that life is sacred and that the lives before us should be honored, just as we honor their Creator.
Why do children love their parents? Why do spouses love each other? Why is there a bond at all between family members long after children have become adults? Those who have been there at the end-of-life know the intensity of the experience shared, the intimacy, the life-changing communications that are passed back and forth among all present. Relationships between family members reflect a love from above.
Patients know that their journey is about to end here, and many have faith that a new journey will begin at that time, but they wish to say their final words to those they love. It's clear to any who have worked with the dying that this is a time for healing, listening and speaking, being with and loving.
Snuffing out those living at the end of their lives is the furthest thing from the minds of those who love and those who serve.
It's true that in the end, some of the dying will never be able to say they're sorry and some will never be able to forgive, but the opportunity is there. A son or daughter can forgive a dying father or mother, brothers and sisters can let go of the past, or the dying can forgive those who will survive, accepting that what happened through the years, does not negate the love that remains. In the end, if we can forgive, we uncover the love that was buried underneath all the things that no longer matter.
When a patient is willingly or unwilling hastened into a medically-induced coma or intentionally overdosed and made to die, none of these things happen. There is no opportunity, no time, to process what dying is all about, no time to process what living was all about. There is no time to process what the intertwining of our lives means in the end, and there is great meaning to it all.
How utterly blind are those who would rob the living and the dying of this opportunity, blessed by the Lord, to be with the dying as their time comes! When a child is born, those who are there recognize the newborn as a wondrous miracle of life. When a man and a woman marry, it is done with a solemn oath, a sacrament. And when a person dies, that too is seen as a sacred moment, however sad we may feel about it. There is clearly wisdom in Kubler-Ross's recognition that a transition occurs within people who approach the end of their days here on Earth. And there is wisdom in doing everything we can to support and care for all involved.
Whether it involves a patient going through "denial, anger, bargaining, depression and acceptance," or simply saying "goodbye" to loved ones, the time spent living at the end-of-life is precious to those involved. I remember a man who pled that he might live a few more days till his nephew was able to arrive from deployment on board a ship far away. His blood pressure had been dropping and death looked imminent. We could do nothing to cure his illness, but he was able to take in some small sips of coffee to bring his pressure back up, and along with more fluids, lived another week or so, grateful to hug his nephew one last time before he died.
What if he had simply been sedated and made to die before his nephew arrived? What bitterness the nephew would have felt, forever blaming himself and the Navy that he had been too late? What regret the patient would have felt that he could not express his love that one last time? What sad memories the family would have carried with them the rest of their lives! But when it works out, and patients are seen to hold on till a special someone in their family arrives, it feels right and there is peace.
What if patients whose lives have been snuffed out, had been allowed to interact with their family till the natural end? The healing work at the end-of-life would have taken place. Words could have been spoken, songs could have been sung, embraces could have been shared and the blessing that comes from sharing our love could have been allowed.
Assisting a patient's death? Imposing death? Who are we to step in and create an executioner's role for those of us who are here to care, not kill? Who are we to casually push patients over the edge into a fall from which there is no escape? Who are we to destroy the very mission of the work we are here to do?
We know there are many who think nothing of ending the lives of those whose time is coming close or who are simply elderly, disabled or chronically ill. They think nothing of what they do and care nothing about what they take from the families and patients alike. Like bulls in the china shop, they destroy the priceless thing they were there to find, a place of hope and healing, where distressing symptoms are relieved and all is done to allow the patient and family time to be together at the end. Instead of supporting the patient, they kill the patient. Dark! Ignorant! A betrayal of all that needs to and should be done.
It is, however, understandable that they do these things. They've been misled by blind teachers and guides to believe there is no ultimate purpose in life, that there is no absolute right or wrong, so killing the vulnerable in a clinical setting is "ok" and approved by management and government. If it were not approved by management and the authorities, the police would investigate and the district attorneys would prosecute. They don't. So, we know that the government is actively involved, approving the hastened, imposed deaths in clinical settings, as well as approving the cover up of those imposed deaths.
Many end-of-life care staff have been trained by agents of those who gain from the patient's loss: managed care corporations like the one that Compassion and Choices' Barbara Coombs Lee worked for as an executive, agencies that sign up patients, and while seeking profit, ration care and do not provide complete services when they're really needed. Or, they've been trained by zealots in professional or administrative roles who are "true believers" that patients are better off dead when their quality of life declines.
We need to reject the betrayal of the mission at the end-of-life. Any who are able must create new agencies that will support the mission to care and encourage all who are dedicated to that mission.
If you are dismayed about what is occurring in this industry, do something about it. If you have no idea what to do, talk to someone, and see where you can begin. Start a new hospice that honors the sanctity of life, that provides appropriate clinical care. If you can't run an agency, then start a fund drive to begin one. Find those who have the talent to help in some way to do the job. Encourage others to get involved. Whether you have any professional skills or not, you can do something to make this a reality in your neighborhood!
Read and take the Hospice Life Pledge and share it with other agencies and staff. Working together, we can create a new beginning in the lives of our patients, in the relationships with their families and in the industry itself.
Just as the end of the year signals the start of the new year, and the end-of-life signals a transition to a new reality, hospice and palliative care must be about new positive beginnings, new opportunities to relate, share, comfort, and support. When a patient is dying, the patient and family members may need encouragement. Patients may need to know that they are still valued and loved. Family members may need encouragement to overcome resentments from the past. Patients need expertise in handling their unique clinical needs. They need someone to be there when they feel alone.
When a nurse or physician is challenged and ridiculed because they choose to care, they need to be supported and affirmed. They need a safe haven to practice the art of hospice and palliative care as it must be provided to assure the needs of the patients and families are met. Their conscience rights to reject imposed death must be honored. A safe haven for practice necessarily includes a hospice administration, board, and staff that honor the sanctity of life and the mission the public has been led to believe hospice and palliative care are about.
We can do this. We can help to create the safe havens of practice, new agencies that are dedicated in this time to the mission. We can help encourage those that are already doing this work, and we can care for those patients and families as they expect to be cared for. Doing this, we can make a wonderful difference in the lives of all involved.
What we can see could be, can be.
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