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 survey’s 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.
“It’s 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 what’s 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 patient’s 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.
“I’m deeply concerned that if we don’t 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 someone’s 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 System’s hospice program in the Philadelphia area. “Believe me, if there were an easy way to communicate these issues, then we wouldn’t have highly qualified physicians called before medical boards to explain their actions. To some degree, this is a cultural change. We’re far ahead of where we used to be 20 years ago. On the other hand, we can’t wait another 20 years for these things to go away.”
Doctors who care care for dying patients should take into account the public’s 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 it’s happening every day, it’s hard to remember sometimes that the public didn’t 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 don’t 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. Casarett’s 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%
Patient’s friend or relative: 59%
Physician’s 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)
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It’s a fact. “Keeping them comfortable” with opiates and benzos inevitably kills them.. They’re gonna die either way. They might as well do so pain free.
The only interesting aspect of the article is the curious attitude it takes, that all the accusations must surely be false and without merit.
From my own experience that is definitely not the case.
The AMA is a very liberal organization and fully supportive of the culture of death.
There will be no Death Panels. But there will be lots (and lots) of palliative care — especially for those patients who have no money and who rely on “free” medical care.
From the article: “... even if they have the secondary effect of speeding the dying process...”
That’s still killing a patient.
From conception to natural death.
No one who is sent to a hospice facility, comes out alive. It is a death house.
I went through this with my husband last year. One doctor said send him to hospice. So, I went to the hospice facility and found a patient goes there to die and if the patient needs emergency help to keep him/her alive, it doesn’t happen - the patient dies.
There was a “funeral home room” for funeral homes to come to talk to the family.
My husband was not going to this “death house”. Later, as I talked to doctors they told me that is what happens at hospice - the patient dies. Then, when he was in another hospital under the care of our family physican, I told him, “no hospice”. He said he would not do that to him. I found, with doctors who care about you, they would not use hospice for their family members.
Yes, my husband died, but he lived much longer than he would have if I had sent him to hospice and he got everything possible until he died so I know I did everything humanly possible to keep him alive. I did not abandon him to die in a hospice death house.
Hospice is a death house - that is what it was designed for - to die with no special act to save the person’s life. Give drugs until the patient dies and don’t do anything to keep the patient alive.
If anyone wants to contradict what I have written here, don’t bother. Just go into a hospice death house and die, but stop by their funeral home room to plan a funeral.
One final word - so Medicare doesn’t have to pay more money to keep you alive, hospice came into being, paid by Medicare, so you could die faster and Medicare wouldn’t have to pay more money to keep you alive. It’s one step away from Solient Green. I saved my husband from that kind of death.
I’m pinging you to read what I wrote here.
This is the part where the author pivots from palliative care to killing. See how easily and effortlessly the transition is made? And his ultimate defense? "It's the standard of care now."
If 25% have been accused of murder or euthanasia by patients themselves, then something is very very rotten in Denmark.
I had an experience with a hospice nurse that left me distrustful of the system and the providers.
Perhaps I can speak to this subject from recent personal experience.
My husband died peacefully at home, under hospice care, on March 3rd of this year. He suffered terribly from symptoms that resembled Parkinson’s, but had many autonomic nervous system failure symptoms as well, that conventional Sinemet, and all the other wonder drugs did little or nothing to alleviate.
He stopped eating and drinking, and with the help of an experienced nurse here in our assisted living building, I worked up my courage to ask for hospice. It was difficult to convince the three doctors involved in his care to sign the papers, because (in my opinion) they refused to accept that the standard meds prescribed were not working, or were causing horrible side effects.
Taking a Parkinson’s patient to the emergency room is asking for a disaster. I learned that the hard way. He begged me not to be taken back to the emergency room, and asked that he never have to go into rehab again, after the the hospital stay, when he never got his meds on time, and was treated by whoever was on-call and knew nothing about how complicated his case was, because of the autonomic nervous system features.
Reading a chart for 3 minutes is not enough - and floor nurses do not understand the importance of timing the meds to the minute, and making sure that they are co-ordinated around the meals.
Anyway, when the last crisis happened, we didn’t take him to the hospital. He didn’t want to eat or drink, and was in severe muscular pain. He was given a very LOW dose of morphine, just enough to take the edge off his pain, and as much liquid as we could get him to drink, and we swabbed his mouth constantly.
He died peacefully, with me holding his hand, and no longer in pain. Hospice was wonderful to us both, and if I get some crappy disease, this is the way I want to go.
I miss him so much. I miss his voice, his mind, his wisdom, and his scent. Words cannot tell the depth of my grief at losing my lover, my best friend, and the father of my children, who was always there for us.
But, I respect the choices others make. There are no simple solutions to the illnesses that eventually end our lives, and we should be able to choose according to our preferences.
At the end of my husband’s life, morphine (again an extremely low dose) was the only thing that helped him with the unremitting pain. Thank God for it, for he was free of the torture.
Perhaps I can speak to this subject from recent personal experience.
My husband died peacefully at home, under hospice care, on March 3rd of this year. He suffered terribly from symptoms that resembled Parkinson’s, but had many autonomic nervous system failure symptoms as well, that conventional Sinemet, and all the other wonder drugs did little or nothing to alleviate.
He stopped eating and drinking, and with the help of an experienced nurse here in our assisted living building, I worked up my courage to ask for hospice. It was difficult to convince the three doctors involved in his care to sign the papers, because (in my opinion) they refused to accept that the standard meds prescribed were not working, or were causing horrible side effects.
Taking a Parkinson’s patient to the emergency room is asking for a disaster. I learned that the hard way. He begged me not to be taken back to the emergency room, and asked that he never have to go into rehab again, after the the hospital stay, when he never got his meds on time, and was treated by whoever was on-call and knew nothing about how complicated his case was, because of the autonomic nervous system features.
Reading a chart for 3 minutes is not enough - and floor nurses do not understand the importance of timing the meds to the minute, and making sure that they are co-ordinated around the meals.
Anyway, when the last crisis happened, we didn’t take him to the hospital. He didn’t want to eat or drink, and was in severe muscular pain. He was given a very LOW dose of morphine, just enough to take the edge off his pain, and as much liquid as we could get him to drink, and we swabbed his mouth constantly.
He died peacefully, with me holding his hand, and no longer in pain. Hospice was wonderful to us both, and if I get some crappy disease, this is the way I want to go.
I miss him so much. I miss his voice, his mind, his wisdom, and his scent. Words cannot tell the depth of my grief at losing my lover, my best friend, and the father of my children, who was always there for us.
But, I respect the choices others make. There are no simple solutions to the illnesses that eventually end our lives, and we should be able to choose according to our preferences.
At the end of my husband’s life, morphine (again an extremely low dose) was the only thing that helped him with the unremitting pain. Thank God for it, for he was free of the torture.
Its a TOTALLY a personal matter and the idea that the government has anything to do with it at any level is sickening beyond belief.
“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.”
What is the definition of ‘effective’?
I think we know.
He was tired, sick, hurting, and wanting for the better world beyond. I gave him his meds. I checked myself allowed maximum and minimum strengths. He never no where near approached maximum on any pain or Benzo medication.
The truth was this. He was initially only given three years. His urologist was tops and contained it for about 8 years then the Oncologist became involved the last two. During that time and for his age they were truthful the likelihood was the cancer would not kill him but another unrelated matter would like heart attack etc. He was just otherwise a lot healthier than most for his age.
Just so you know, my experience was so very different than yours. Please see my post above.
Hospice is used when all else fails, and “modern medicine” can’t stop the unrelenting devastation caused by some illnesses, and can’t relieve the pain and destruction caused by the same.
Please know that no-one from any funeral home came to talk with me. My husband and I decided on our own, to donate his brain to Harvard for research into these brain destructive illnesses, and his body to a local medical school for students to study.
No-one made a profit, and my beloved husband now is no longer suffering from a horrible disease that made the last decade of his life completely miserable.
Please do not generalize from your personal experience and opinion to all of us. You do not understand that some of us are dealing with intractable illnesses that modern medicine cannot alleviate or cure.
Because it is so new, and so raw for me, credo, I am leaping to a conclusion.
What do you think you know.
If no one made a profit how do they stay in business? Profit is not evil, it’s necessary and it’s good.
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