Posted on 04/29/2012 4:46:29 PM PDT by Brian Kopp DPM
By Kevin B. O'Reilly, amednews staff. Posted April 16, 2012.
Three decades after hospice emerged as the standard of care for terminally ill patients, the end-of-life treatments that palliative medicine physicians provide are frequently referred to as murder, euthanasia and killing.
More than half of hospice and palliative medicine physicians say patients, family members and even other health professionals have used those terms to describe care they recommended or implemented within the last five years, according to a nationwide survey of 663 palliative care doctors in the March Journal of Palliative Medicine.
Common palliative care treatments such as the use of opiates, sedatives and barbiturates to control pain and other symptoms are enough to draw accusations of murder and euthanasia, the study said. The troubling survey results come nearly six years after the American Board of Medical Specialties approved the hospice and palliative medicine subspecialty certification, and 30 years after the creation of the Medicare hospice benefit.
Nearly 1.6 million Americans received hospice care in 2010, up from about 25,000 in 1982, said the National Hospice and Palliative Care Organization. And palliative medicine has made its presence felt in hospitals, with 85% of 300-plus bed hospitals boasting palliative care teams, according to the New York City-based Center to Advance Palliative Care.
Yet the growing use of hospice and palliative care is creating more opportunities for misunderstandings, experts said. New developments in end-of-life care aggressive pain and symptom management (even to the point of unconsciousness), along with a greater willingness to withdraw advanced, life-sustaining treatments such as mechanical ventilation, dialysis, and artificial hydration and nutrition still strike many people as wrong.
The surveys findings highlight the gap between the well-established ethical and legal boundaries that demarcate acceptable end-of-life care and the understanding of patients, families and other members of the health care team, experts said.
Its alarming, said H. Rex Greene, MD, a practicing oncologist and palliative medicine specialist in Lima, Ohio. To accuse legitimate palliative care physicians of euthanasia and murder is a horrible mischaracterization of whats done to relieve symptoms at the end of life.
Twenty-five of the physicians surveyed said they were formally investigated by their institutions, state medical boards or prosecutors, with about half of those cases related to the use of opiates to manage dying patients pain. Nearly a quarter of the investigations were related to the use of palliative and sedative medications when discontinuing mechanical ventilation. An additional 8% of the investigations were for palliative sedation the practice of sedating to unconsciousness terminally ill patients who have severe, refractory pain.
All of these treatments when conducted with the consent of patients or surrogate decision-makers and implemented with the intent of alleviating pain or other symptoms in terminally ill patients are broadly accepted as ethically and legally appropriate, even if they have the secondary effect of speeding the dying process.
Physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care, says the American Medical Association Code of Medical Ethics. This includes providing effective palliative treatment even though it may foreseeably hasten death.
Although none of the physicians investigated was found at fault, most reported worry, anger, anxiety, isolation, depression and difficulty working as a result of the ordeal. Euthanasia accusations whether voiced in the patients room or in the courtroom could have a chilling effect on physicians treatment of dying patients symptoms, said John G. Carney, CEO of the Center for Practical Bioethics, a Kansas City, Mo., think tank that works to improve end-of-life care.
Im deeply concerned that if we dont pay attention to the message in this article, we are going to be dealing with this issue of physicians who are reluctant to do what they know to be right because they are afraid of what people will say or that someones going to investigate, said Carney, a former hospice executive director.
The distinction between aggressive pain control or the withdrawal of life-sustaining treatments and euthanasia is still lost on many patients and families, physicians said.
These misperceptions are really pretty hard-wired and difficult to eliminate, said David Casarett, MD, chief medical officer of the University of Pennsylvania Health Systems hospice program in the Philadelphia area. Believe me, if there were an easy way to communicate these issues, then we wouldnt have highly qualified physicians called before medical boards to explain their actions. To some degree, this is a cultural change. Were far ahead of where we used to be 20 years ago. On the other hand, we cant wait another 20 years for these things to go away.
Doctors who care care for dying patients should take into account the publics lagging understanding of end-of-life treatments, take time to explain their intricacies and make use of ethics consultation services, said Porter Storey, MD, executive vice president of the American Academy of Hospice and Palliative Medicine.
When I started training in this area 30 years ago, it was a rare thing to remove a feeding tube because nobody lived long enough to get that sick, said Dr. Storey, who practices outpatient palliative care in Boulder, Colo. Now many people are living until they are extremely debilitated on life support. And if you work in an ICU, you want to sit down and take time and talk to people, but when its happening every day, its hard to remember sometimes that the public didnt get informed that things have changed.
Yet confusion about end-of-life care is not limited to patients and families. A majority of the doctors surveyed said that other physicians or health professionals at times characterized their palliative care treatments as murder, euthanasia or killing.
As end-of-life care has become more specialized, the gap between what palliative care specialists see as appropriate care and other doctors perception of those treatments has grown, physicians said.
Those of us in palliative care and hospice dont think that much about putting a patient on a large dose of an opioid like morphine. We do it all the time, and we see patients do well, said Dr. Casarett, associate professor of medicine at the Perelman School of Medicine at the University of Pennsylvania.
Recently, a patient dying of cancer enrolled in Dr. Casaretts hospice program after deciding to stop chemotherapy treatment. The oncologist caring for the patient was upset and talked with Dr. Casarett, saying that the combination of stopping curative treatment and using high doses of opiates was wrong.
He said, We might as well just be walking away, and we might as well just shoot [the patient] now, Dr. Casarett recalled.
It still stings to hear that, he said. But Dr. Casarett takes solace in knowing that he is doing right by his patients. I tell other physicians that this is the standard of care, and that these sorts of medications and interventions are safe and effective.
More than half of palliative care doctors have been told the care they recommended or provided is murder, euthanasia or killing. The frequency of such accusations varies by source and at times includes other doctors.
Patient: 25%
Patients friend or relative: 59%
Physicians friend or relative: 25%
Another physician: 56%
Another health professional: 57%
Source: Prevalence of Formal Accusations of Murder and Euthanasia against Physicians, Journal of Palliative Medicine, March (ncbi.nlm.nih.gov/pubmed/22401355/)
Prevalence of Formal Accusations of Murder and Euthanasia against Physicians, Journal of Palliative Medicine, March (www.ncbi.nlm.nih.gov/pubmed/22401355/)
Opinion 2.201 Sedation to Unconsciousness in End-of-Life Care, American Medical Association Code of Medical Ethics, adopted June 2008 (www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2201.page)
What got Mariner the boot was his attack on another poster:
"I saved my husband from that kind of death."
No, you tortured him for the extra days, weeks or months that he survived under intense...and futile...medical care.
The rest of your ridiculous accusation deserves no response.
Nonetheless, people are dying prematurely every day in hospice and palliative care due to withdrawal of hydration, masked by terminal sedation.
The terminal sedation is excused as "pain control" in numerous patients who never voiced any concern of pain.
I'm sorry if this pricks yuour conscience, but stop trying to deflect from the reality of what is going on every day in end of life care, Doctor.
Not a charge, a review of the timeline. The ping to a person who wasn’t posting before was gratuitous.
Nevertheless, I’m hoping for a reprieve for Mariner.
Are you saying he is an "instigator" too?Didnt realize it at the time, but my father was killed by morphine. The whole family gathered around his bedside for a 24 hr vigil while he was dying. They kept him on morphine to ease his pain. He slept peacefully around the clock until he was gone. My older sister died recently. I visited her in the hospital just a couple days before she died. She didnt feel well but was talking and joking with us. Was surprised to learn the next day they sent her home to die. I went to her home and the family was gathered around her bedside as she slept, on morphine to ease her pain right up to her last breath. My brothers father-in-law who was healthy and worked every day of his life even though hed been retired for thirty years and was up on a ladder pruning a tree when he started having problems catching his breath. I mean when youre over ninety years old you might sometimes have trouble catching your breath when youre working hard. They took him to the hospital and they put him on morphine to ease the pain and he was dead within 24 hours. I visited him too with the family gathered around waiting for him to take his last breath. Ive seen it happen enough times to realize this is not right. When I was in the hospital after they amputated my leg they put me on morphine. I was drugged up and basically out of it. They kept me in bed 24/7 wouldnt even let me get up to go to the bathroom. They had some kind of device hooked up to me where if I ever felt pain all I had to do was push a button to inject a dose of morphine directly into my IV. Good thing I finally realized what was happening and had them disconnect it. Was up a couple days later, in therapy, then got the heck out of there. Was never so glad to get home in my entire young life.
Unless one has experienced a loved one go through a very painful terminal illness, one really isn’t making an informed judgement. It might be easy to say don’t drug someone up until one sees their mom or dad writhing and screaming in pain that has no other hope, short of death, of ending. Pain can be so bad it makes one desire death. What do you do when a loved one is in so much pain they are beyond even that?
Charming.
You are comparing apples to oranges.
You said I just watched my Mother-in-law die under hospice care a couple of months ago and now you are saying she was in a nursing home and was addicted to pain meds for a dozen years before even entering the nursing home. So which is it?
Let me be clear that I think that over medicating with opiates nursing home patients or the elderly in to make them compliant is downright evil. Giving a terminally ill and dying person opiates in the last days and hours of their life in order to ease their suffering is not wrong.
I had a family member euthanized that way by a combination of the doctor sending her home without IV and the hospice doctor foisting a lethal dose of morphine on her against her will. Either would have been enough to do her in, together they snuffed her out quite quickly.
It is criminal and widespread.
I’m sure you changed Mariner’s mind.
I’m not durprised at the anger of many on this thread, I’m surprised that you pinged Jim instead of simply talking to Mariner, calling for an apology.
Life and death experiences naturally are highly emotional. However, as your own hospice concept illustrates, end of life care and hospice are not all the same.
Not all use of opiates are the same, nor is the doctrine of unintended consequences illicit. We shouldn’t sedate the patient any more than he wishes, and we should monitor his comfort rather than treat our own distress by giving him meds. we must acknowledge that different people have different levels of tolerance for pain. The patient’s caregivers, family, doctor and nurses need to all be involved and monitor the patient.
Unlike Mariner, I assumed that the wife made sure her husband was comfortable -her dispute was with the concept of hospice facilities, not with pain control. I would have discussed this with him rather than getting him banned/suspended.
It’s fairly simple. You give someone IV morphine around the clock, it depresses their breathing. Keep it going, and it will gradually kill anyone. Adding Benzos into the mix hastens the whole process. When my wife first became a nurse, she was a little disturbed by the whole thing. The doctors have a terminal patient that isn’t going to survive long. They pump in the drugs, and it will bring on ‘the end’.
Nonsense, Mariner said it was TORTURE to not kill someone.
Brian is the instigator, here. He posted this, pinged his buddies, and then called you for help when he got the response he expected.
You are WRONG.
Brian and I discussed this article yesterday afternoon and I asked him to post it and to ping me. I then pinged one of my ping lists.
Every other post of Brian's on this thread was to people who were already on the thread until he pinged Jim because of the abusive comments.
Free Republic is a PRO-LIFE forum, Mariner accused those of us who are pro-life of being "religious zealots."
Please read post 65 before telling me that I wrote is “B.S.”
BTW, my conscience is clear and I’ve written what I’ve written without implying that I know anyone else’s mind. The argument is not with your intentions or conscience, but with the issue.
If I were to guess, however, I would assume that Mariner has a painful memory.
Also, did you see that my response th Alta Charo’s op ed was posted on the New England Journal website?
I have a comment about the slide stating the principle of double effect is being used to justify terminal sedation. If this is being done, it is an incorrect usage of the PDE. It was a Catholic principle formulated originally by St Thomas Aquinas and though, today, it may be 'misinterpreted', many good and orthodox Catholic theologians use it in certain cases in which an action has 2 effects - one good and one evil. 1)The action must be good in itself or at least indifferent (i.e. cannot be evil itself) and must be capable of being ordered to God and to neighbor. 2) The good effect must not be achieved through the bad effect (this would otherwise make the ends justify the means); 3) there must be proportionate good over the evil effected (this is not proportionalism which is based on relativism and which the Church rejects, but rather the good effect must greater than the evil effect; 4) the intention of the subject must be directed toward the good effect and merely foresee and tolerate the bad effect; 5) there must be no other avenues available to achieve the good effect.Terminal sedation, from the start, is not an action that can be termed good or even indifferent - it is an evil, to kill an innocent life, therefore it is incapable of being ordered to God and to neighbor. Thus, strictly speaking, the correct usage of the PDE would disavow terminal sedation.
However, PDE is used to justify treating severe pain at the end of life. For example, when the minimally effective dose is no longer working, and the patient remains in pain, and the choice is to increase the dosage until their is adequate pain relief. This action is good per se as it is ordered to God and love of neighbor in that the effect to alleviate suffering is good and noble. The foreseen and tolerated evil effect is that it may shorten the life of the patient but this is not the intention of the physician in administering higher doses of opioids.
Treating pain for relief, even at the cost of shortening life is c/w the PDE; terminal sedation is not intended to treat pain and therefore an evil act and cannot be justified by the PDE.
We can both agree with these principles, right?
On the other hand, would you agree with this statement?
The Church rejects either the act or omission which, of itself or by intention causes death in order to eliminate suffering, therefore any omission of nutrition and hydration by itself or with the intention to cause or hasten a patients death must be rejected. Therefore we must hold for a presumption in favor of providing nutrition and hydration for every patient-especially the dementia or stroke patient who receives hospice, comfort or palliative care. If a patient is not able to sustain himself (herself) by oral intake of food and water, then assisted nutrition and/or hydration (eg, intravenous fluids, total peripheral nutrition {TPN} and/or a PEG tube) should be offered and should not be withheld or considered burdensome except for rare exceptions in which they could acutely worsen a persons medical outcome (eg, giving intravenous fluids to a patient who is experiencing an acute episode of congestive heart failure). These measures are ordinary treatments and therefore cannot be based on a persons quality of life.Patients who suffer from dementia or stroke should not die due to dehydration and/or malnutrition. The symptoms of dehydration should be treated with oral or assisted fluids and not via pain medications or sedatives such as morphine or lorazepam.
I’ll admit that I did say that Brian “got the response he expected. “ I have no way of proving what he expected, and meant whatI “I expected.”
I KNOW there are good, ethical people working within the end of life industry. I am sure you are doing your best to follow ethical guidelines, and I apologize for suggesting otherwise.
But again, we MUST recognize that there is a dark side to this industry, and some very heavy hitters pushing the euthanasia agenda from within the palliative care field. Failure to admit this, and further, refusal to admit that there is a lot of euthanasia occurring every day in this field, does not serve the pro-life cause.
If you have not seen the documentation below, or the intimate involvement of Soros in the palliative care field and the new bioethics, please read it carefully:
Repackaging Death as Life
The Third Path to Imposed Death
By Elizabeth D. Wickham, Ph.D.
Executive Director, LifeTree, Inc
Copyright, 2010, EDW
Presented at the 2nd Annual Life Conference
Raleigh, North Carolina, October 23, 2010
A major transformation of traditional medical ethics is taking place. What was once unthinkable has become acceptable, and no one really knows why. In the last half of the 20th century a multi-million dollar social engineering and marketing project financed by foundations and directed by bioethics think tanks has normalized the withdrawal of ordinary care.
History
Lets look to the first organized euthanasia movement in America which emerged in the 1930s and was known as the Euthanasia Society of America. Its strategy was first to secure legalization of passive euthanasia as a way to prepare public opinion to accept active euthanasia, commonly known as physician assisted suicide. But there were conflicts within the movement and by 1980 there came to be two distinct wings when the more militant branch split off. The militants call themselves the Hemlock Society, Death with Dignity and Compassion and Choices. This wing advocates for physician assisted suicide.
The more nuanced wing, which is a continuation of the Euthanasia Society of America, gave itself more beneficent-sounding names which included Society for the Right to Die and Concern for Dying in the 70s and 80s, Choice in Dying in the early 90s, Partnership for Caring in the late 90s and Last Acts Partnership in the early 2000s. This wing claimed to be against physician assisted suicide. An important piece of the puzzle is that Ira Byock, then president of the American Academy for Hospice and Palliative Medicine, joined with Choice in Dying in 1998 to help form Partnership for Caring.
It may appear that this more nuanced wing ended when Last Acts Partnership dissolved itself in 2003. But many of the Last Acts Partnership people can now be identified throughout the new medical subspecialty called palliative medicine. Others can be identified working for a new group at the National Hospice and Palliative Care Organization called Caring Connections.
Today we shall focus on the more nuanced wing of the euthanasia movement. It presents itself as the alternative to physician assisted suicide, thereby bringing us a false sense of security, but all the while working to transform how we die. It is a movement to control death and call it improving End-of-Life care.
Third Path and Bioethics
In her 2005 book Terris Story: The Court-Ordered Death of an American Woman, author Diana Lynne describes it as the third path to death: not wholly natural, not suicide, but something in between.
The third path has many similarities to the Third Way political movement of the 1930s in Europe. Both are governed by a utopian and authoritarian philosophy. They believe that there are no absolute principles, nothing is fixed. They seek to triangulate and settle on the middle ground between identified extremes. They operate by building consensus, binding people together for the sake of the public interest. The individual is secondary.
Listen to how Daniel Callahan, a major third path proponent, described the problem in 1983: Denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die,
And (he observed that) a deep seated revulsion exists over the prospects of withholding or withdrawing nutrition and hydration.
In late 1984, a story appeared in the New York Times. It is important because it described how both wings of the right-to-die movement and emerging bioethics think tanks such as the Hastings Center, led by Daniel Callahan, were working TOGETHER to change attitudes and behavior
working to change the culture
painting the issues in terms of compassion versus technology.
Today bioethics is embedded in formal governmental regulations, state and federal laws, and medical ethics guidelines around the world. Bioethics is a subfield of ethics that was created in 1978 by the Belmont Commission and it quickly became internationally accepted. From its philosophic base has come the utilitarian (and futilitarian) culture that now threatens to permanently change the culture and practice of medicine.
Earlier this year Pope Benedict XVI discussed a fundamental problem with bioethics in his address to the Pontifical Academy for Life. He said, some ethicists warn that modern bioethics is in fact a new normative system of ethics that, based on principles of utilitarianism, can never be compatible with Natural Law principles.
In the last few decades (Bioethics) has largely supplanted traditional, Natural Law-based medical ethics in hospitals and ethics boards in most western countries. He continues,
Under traditional medical ethics, the guiding principle is do no harm. But contemporary bioethics abandons this in an effort to find the utilitarian goal of the greatest good for the greatest number. Under these principles, preserving the life of the human patient is not considered paramount.
Strategy and Program Design
Have you noticed that people in this more nuanced wing of the euthanasia movement seem to be working from the same set of talking points?
The people who are talking these points are financed by powerful foundations.
Among the major foundations spearheading this effort are 1) the Robert Wood Johnson Foundation, which funded the research, and infrastructure, and 2) George Soros Open Society Institute/Project on Death in America, which funded a cadre of professionals. In the last 10-15 years these two foundations provided well over $300 million to advance the integration of their version of palliative care into the American health care system.
In the mid-1980s, Robert Wood Johnson Foundation invested in a carefully designed multi-year research study on how Americans were being cared for at the end of their lives. The SUPPORT study which stands for The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment launched the RWJF/Soros initiatives.
The SUPPORT study was conducted on nearly 10,000 patients in five University hospitals including Duke Medical Center. In a sense, SUPPORT was a failure. It attempted to prove that with adequate communication they could change how people die get people to fill out living wills and forego treatment. But it didnt work.
So the researchers and their foundations used the data to make their case for changing the entire medical system, as well as shaping the popular culture. SUPPORT brought media and academic journal attention to a purported need for improvement in end of life care. The desired changes identified at that time in the mid-90s were:
1) develop a new subspecialty of palliative medicine,
2) relax constraints on prescription of opioids,
3) invest in palliative care research,
4) revise textbooks to include core content on palliative care, and
5) make professional education in palliative care mandatory.
Their intent was to change the culture of medicine away from its traditional focus on cure.
Five years after RWJF began the SUPPORT study, in the mid-90s George Soros entered the field with a press release that claimed there was a profound denial of death in America. The third path movement rapidly coalesced.
Soros Open Society Institute/ Project on Death in America began funding a Faculty Scholars Program which provided a leadership base for promotion of palliative care into mainstream medicine. PDIA Faculty Scholars in over 50 medical schools developed into a network of colleagues and now the second generation of scholars are committed to institutional change.
Among their first projects directed at professionals were EPEC (Education for Physicians on End of Life Care) and ELNEC (a similar program for nurses). Some of the other projects were directed at changing the general culture including RC EPEC (tailored to Roman Catholics) and APPEAL (tailored to African-Americans).
In 1996, RWJF formed Last Acts, a coalition of over 100 professional and consumer organizations. The first Last Acts Leadership Conference on March 12, 1996 brought 140 national leaders to Washington, DC. In a special supplemental report by the Hastings Center which summarized the conference, Daniel Callahan described their three-pronged strategy moving forward:
RWJF began financing and coordinating statewide end-of-life coalitions or Community-State Partnerships using established state ethics committees, networks and centers in more than 20 states.
The National Program Office for the C-SPs (Community-State Partnerships) was Midwest Bioethics Center (now known as Center for Practical Bioethics), a bioethics think tank in Kansas City. Each grant recipient received a sizable $450,000 from RWJF and an additional $150,000 in matching funds. These EOL statewide coalitions pursued the primary goals of educating, training, advocating and changing statutes at the state level.
Which brings me close to home. How did LifeTree become interested and active in advocating for the very sick and chronically ill?
It turns out that the Carolinas Center for Hospice and End of Life Care directed the Community-State Partnership grantee in North Carolina and they were visibly involved in 2003, lobbying in support of a bill which LifeTree opposed.
On its surface, the bill criminalized Physician Assisted Suicide (the radicals agenda) but also would have validated third path tactics by permissive language in the same bill which validated the withholding/withdrawing life sustaining procedures and prescribing pain medication which hastens death as long as the intent is not to hasten death. LifeTree worked to eliminate these permissive exceptions in the bill and, when it became redrafted more like the Michigan statute which was enacted to stop Dr. Kevorkian, we were surprised to find out that The Carolinas Center and other groups then worked to kill the bill. After it became much clearer and an effective deterrent against hastened death, it never came up for a vote.
A few years later another bill caught our attention. You will recall that the SUPPORT study found that living wills had no measurable impact on the care actually received. And so it was that in 2007 LifeTree worked to oppose a bill that drastically expanded the conditions that would trigger the living will and health care power of attorney and introduce a new type of advance directive called the POLST form. Unfortunately, the bill passed and POLST is currently being implemented in North Carolina!
POLST stands for Physicians Orders for Life Sustaining Treatment. The name says for treatment but in fact POLST is much more likely to LIMIT life-sustaining treatment. The POLST form becomes part of doctors orders and is prominently displayed in the patients medical record wherever the patient goes.
POLST was tested in Oregon in the early 90s and was launched in 1995, one year after Oregon passed legislation legalizing physician assisted suicide. Now, in 2010, over 30 states have endorsed or are developing POLST programs. Only the 20 states in grey on the slide have NO POLST programs to date.
In NC the MOST form, as it is called, can override your Health Care Power of Attorney agent. The form has a lengthy series of boxes to check indicating levels of treatment. Boxes include Comfort Measures Only, No Antibiotics, No IV Fluids, and Do Not Attempt Resusitation
A trained facilitator, using carefully designed curricula such as the Respecting Choices program, may assist in filling out the form which then becomes part of doctors orders, although it can come into effect with neither the patients nor a physicians signature.
Do you remember the discussion of death panels in the proposed Federal health care bill last summer? Did you know that the consulting sessions between physician and patient that were to be encouraged and federally funded involved filling out the POLST form?
How do they define palliative care?
To the uninitiated, there might be a common sense understanding of what the words palliative care should mean and it might go something like this: Managing symptoms and relieving pain.
Many physicians, nurses and other helpers work to do just this and we recognize and applaud them. Many caregivers dedicate themselves to these high principles in a totally ethical way. Unfortunately, because of the movement we have been describing, it is fair to say that Palliative Care, in its true beauty, is now at considerable risk!
As early as 1986, palliative care professionals had signed on to the World Health Organizations official definition which went well beyond the common sense understanding. By 2006, the official WHO definition had become an approach which improves quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
With funding from Soros and others, symptom management for the individual patient became broadened to a larger social dimensionethical decision making, conflict resolution, and spiritual guidance orchestrated by a multidisciplinary team.
The great palliative care marketing achievement is reflected in the evolving nature of the definition of palliative care. Todays officially defined palliative care is far more than managing a persons symptoms and alleviating pain. Todays palliative care is an approach or a process guided by a trained and certified palliative care team to help the family determine at what point there should be a shift in the goals of care, putting the patient on a different track, away from cure and on towards death.
Recall again what Daniel Callahan said in 1983 about solving the problem of making biologically tenacious patients actually die by withholding food and water. Imposed death is being repackaged as better quality of life.
Critical Juncture in Health Care
We are at a critical juncture in health care as funding moves from private to public sources. For third path proponents, end of life care has always included making ends meet within a nationalized health care system. It would appear that this new version of palliative care may be emerging as the glue that holds our reformed health care together.
Prior to the passage of the national health care legislation, the unanswered question for the third path people had been, If we build a field of palliative care, will anyone come? How to convince the American public to accept the curtailment of services? Listen carefully now as they use the marketing technique of selling value. But it will be value based on quality, and quality measured in cost containment.
Lets look at where we are today who are some of the "chosen leaders?
It is no surprise that the person tapped to define quality EOL care in the new reformed health care system and to head the Centers for Medicare and Medicaid (CMS) is Don Berwick the guy made famous by his rationing with our eyes open statement.
1. Institute for Healthcare Improvement and Joanne Lynn
Berwick has been defining quality for twenty years. He is past president and CEO of IHI, the international Institute for Heathcare Improvement.
IHI focused on end-of-life care from the start. It specializes in bringing together health care organizations to produce guidelines. RWJF funded their Collaborative on End-of-Life Care which set forth three objectives:
1) Institute advance care planning discussions within 24 hours of hospital admission and document the plan in a patients chart
2) Reduce the number of transfers to the hospital in the last 2 weeks of life and reduce emergency room utilization
3) Begin bereavement assistance and support for the family and friends before a patients death
Berwick chose Joanne Lynn who had directed the SUPPORT Study to chair his IHI End of Life Care Collaborative. Lynn was on the board of Concern for the Dying and made her mark in the 1980s by developing guidelines for withdrawal of treatment. In a Hasting Center Symposium on May 20, 2008 she said, We need to build a social consensus drawing on a new paradigm that tailors care to the new reality of dying which is after a long, chronic illness. Not only is it the right thing to do, it makes good business sense.
We look back to a June, 1997 NY Times story to get a better description of what Lynn believes about total sedation and withholding and withdrawing life sustaining treatment. When a patient is ready to die, I can stop nutrition and hydration, I can stop insulin and ventilation, I can sedate them. I can creatively collaborate with the forces of nature. But if they really want to control being dead tomorrow at 10, I cannot promise that.
2. National Priorities Partnership and Christine Cassel
Until his appointment to the Centers for Medicaid and Medicare this summer, Berwick was co-chair of the National Priorities Partnership convened by the National Quality Forum. NPP is a collaborative effort of 28 major national organizations to identify a set of National Priorities and Goals and to help find high leverage areas those with the most potential to result in substantial improvement in the healthcare system. In 2009/2010 the Partners identified Palliative Care and End of Life Care as one of the top five priorities for improvement.
Berwick put Christine Cassel in charge of this Palliative Care and EOL working group. Who is Christine Cassel? Cassel is a proponent of physician assisted suicide. She is also president of the American Board of Internal Medicine. With Timothy Quill and Diane Meier she coauthored a 1992 New England Journal of Medicine article entitled, Care of the Hopelessly Ill: Proposed Clinical Criteria for Physician Assisted Suicide.
With funding from George Soros, Cassel and Diane Meier co-founded the Center to Advance Palliative Care (CAPC as it is known). CAPC aggressively markets the new sub-specialty of palliative medicine and trains people at nine Palliative Care Leadership Centers around the United States.
Lets go back to the Euthanasia Society of America chart. Byock, Lynn, Cassel and Meier were all members of Choice in Dying and Concern for Dying. Where are they today? Lynn and Cassel are working with Berwick; Meier is advising a special Senate committee; and Byock is blogging at the New America Foundation and giving high profile interviews with the media.
Given this clear agenda it is no longer safe to assume that palliative care is still just about treating a patients symptoms. If that were so, why would there be a need for an entirely new subspecialty in medicine administered by a multidisciplinary team? Why must there be palliative care centers? What do they teach in these centers?
In closing, I would like to address the concerns of those who simply find it hard to believe that palliative care could be one of the reasons things are going wrong in the field of medicine.
I dont think we can ignore the evidence of the funding and the stated agenda of the recipients of that funding.
Let me conclude with another quote from the 2005 Hastings Center Special Supplement Report written shortly after Terri Schiavo died. The author of the Preface complained:
What progress has been made is now in danger of being undone. The framework of principles for legitimate decision-making at the end of life built by the courts, the legislatures, and in professional and ethical literature has not been embracedindeed, it has been rejected, at least in large part by increasingly powerful and vocal minorities; and political support for this framework, as well as its intellectual justification, seems to be eroding. This is a CRITICAL PROBLEM.
And so I say to everyone here today: Continue to be part of the problem! We are making a difference. Become more educated and stay firm.
The Natural Law, which values respect for each life as a unique gift from God, is etched into our hearts by our Creator. Through education, prayer and surrender we can identify and resist the moral pitfalls placed in our way by third path proponents who are working to create and institutionalize a palliative care paradigm that does not adhere to the Divine Plan. This will require vigilance and firm adherence to moral principles. In a culture which truly respects each life, death will never be imposed. In a culture which values life only on a utilitarian scale and in which resources become scarce, each person who faces a life-threatening or chronic condition will find that life endangered. This will be especially so among the elderly, as imposed death will be offered as the morally ethical choice. We must arm ourselves with the truth so that we are able to reject EVERY effort to impose death
>She was told by TWO hospice providers that they would not take her unless she agreed to stop the feeding by feeding tube. She has months to live. Agreeing to their terms, which violate federal guidelines, would be a premature death sentence.<
These Hospice agencies need to be reported ASAP!
I have read through this entire post and now I want to share my experience as a Hospice nurse of 5 yrs and as a layman who has had family on Hospice.
First of all I have to address this post. If what you say is true, then I want you to report these two hospices immediately to the states A.G. office for investigation. I have had many pts on feeding tubes and they keep the tubes until they pass. Hospice Medicare benefits cover a person to get a feeding tube placed when they can no longer swallow or if its too painful to swallow.
Hospice is not a death sentence. A pt chooses to seek or refuse treatment as they see fit. If the person has been on hospice and decides they want to seek treatment not covered under Hospice, then you simply discharge them. It takes 2 signatures on two forms.
I have NEVER, nor have I ever seen anyone else, withhold food or water or anything else for that matter, from ANY pt at anytime. Now, when a pts body enters the dying process, they’re entire body begins to shut down. Blood flow decreases to extremities, it is concentrated to the heart and lungs, which is the natural dying process. If you force fluids, via orally or intravenously at this point, the cells will not process this fluid and it will fill up the interstitial spaces usually starting in the face and then the rest of the body and then the lungs, so essentially the pt can in fact die from drowning, which I watched my father in law do for days and it still haunts me. Also there isn’t adequate blood flow to the kidneys in order for them to properly filter fluid and that is why you begin to see very little urine, if any. If you try to feed a pt at this time, their digestive system will not digest it or digest it fully because there is not enough blood flow to the digestive tract and it began to slow down or stop all together, so it just sits in the stomach or one of the intestines and is very painful to the pt. Even putting tube feeding into a tube it just sits in the stomach and when you check residual all of the feeding will still be there, unless of course it backed into the lungs, which will most likely cause bacterial pneumonia. I have seen a pt who was continually fed when they were unable to digest it literally throw up there stool. I have also had to digitally remove stool from pts for the same reason, and is quite painful.
I can also tell you from my experience as a nurse, that having family members who won’t give mama morphine because they don’t want her sleeping all the time and they also want to be able to talk to mama, absolutely can make me lose my religion. They will watch their love one suffer in agony so they can “talk” to them. It is so incredibly selfish! Having said all this, I left Hospice nursing this Jan. and may not go back to nursing at all because of the stress. Nurses, who are worth 2cents, will get attached to their pts and families and that is what I did, probably too attached. I internalized the suffering the family was going through. If I had a pt in the slightest bit of pain I took it personally. Sometimes no matter what you do, or what you give a pt., because you cannot OD them, they still have pain. I began to blame myself for it and I would feel like I was failing my pt somehow. With the deaths of my inlaws within a yr of each other and I lost 4 pts in December of last yr within 48 hrs, I reached my limit. I definitely have reached burnout.
As far as some of these articles dealing with private Hospice companies and enrollment under debility and failure to thrive, when I got out a few months ago Medicare was getting rid of the debility dx because of rampant abuse due to its vague guidelines. And I would argue that failure to thrive shouldn’t be a dx either but Medicare doesn’t care what I think. However, whenever I have had a pt with adult failure to thrive, its because their bmi is very low and I would order periactin or megace, or even steroids to increase their appetite, which usually works. I would monitor their wt and bmi and when it came up above Hospice guidelines, I would discharge them.
I do however, have a HUGE problem with Hospice companies needing marketers. Them and the DON’s in charge of making that money will try to get you to admit livestock if they think they can get away with it. But if you are a nurse who takes your license seriously, then you don’t do it. Because when Medicare comes knocking and they will, they are not going after that Doc who signed those order to admit, they are not going after that DON or marketer either, cause they gonna hang you out to dry. The nurse is the one who admitted, we just went with what she said. Good, smart nurses won’t admit a pt who isn’t appropriate. That’s why my last boss didn’t like me too much. She would try and bully me into admitting pts that weren’t appropriate and I wouldn’t do it. I worked hard for that license and that’s my reputation on the line. Not all nurses are very bright, though. Some only care about kissing the bosses ass.
Also the statistic above that states 20% probably don’t qualify I disagree with. When I started my last job I went through all my pts histories, talked to their families and did thorough assessments and name to the conclusion that well over half of those pts were not appropriate. In some places I’ve worked I would even say 80% not appropriate to 20% qualifying.
I also like everyone else see the writing on the wall and do fear that the death panels could very well start in Hospice. I can see where this new health care law could end up with forced Hospice because socialist are evil, murdering people. And I refuse to have a part in it if it ever comes about.
I would just like to end my lengthy post by saying that nothing I have said is intended to discredit anything anyone has said here, or any of their experiences. There are very good caring people in this world and vary a moral people who only care about earning a paycheck. And I would never deny anyone’s experiences because I know how people can be.
>The terminal sedation is excused as “pain control” in numerous patients who never voiced any concern of pain<
Again I couldn’t disagree more. Being in the field in pts homes, doing the evaluations, ordering medications as needed, being at the bedside, something that drs don’t do, I have never, nor have I ever seen or heard of anyone giving pain medication to someone who is not in pain.
When I started my last job I went through all my pts histories, talked to their families and did thorough assessments and name to the conclusion that well over half of those pts were not appropriate. In some places Ive worked I would even say 80% not appropriate to 20% qualifying. I also like everyone else see the writing on the wall and do fear that the death panels could very well start in Hospice. I can see where this new health care law could end up with forced Hospice because socialist are evil, murdering people. And I refuse to have a part in it if it ever comes about.
Of those who were inappropriate admissions (as much as 80%?) how many of them subsequently died while under hospice care?
I have had lengthy conversations with Ron Panzer at Hospice Patients Alliance as well as the administrators, medical directors, and pastoral staff of a number of hospices in this region.
Unfortunately, every patient receives morphine and haldol in the pack of meds prescribed to every patient admitted to hospice and it is used quite frequently even for those patients not expressing concerns of pain or showing signs of agitation.
I'm glad your experience was positive and you were not involved in or exposed to this kind of abuse, but it is widespread in the industry.
From a Catholic perspective, some people who are terminally sedated never get the chance to make things right with God prior to passing from this mortal coil. And therefore fail to avail themselves of the Sacrament of Confession and Viaticum. And therefore may be dying outside of a state of Grace.
And that is far worse than the temporal sufferings they are enduring at the end of their life.
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