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)
Well I can see no disagreements between us. I only advocate dc-ing fluids when it becomes harmful to the pt. Never before.
Roxanol is a SL form of morphine that Is immediate release and is administered along the mucous membrane of the gums. Don’t have to swallow it.
I am so sorry for what happened to your loved one. I have a similar horror story regarding a family member from within the hospital I’ll share another time. Dying and taking care of your loved ones is such an emotional state to be in. That’s why I’m so burned out.
And I absolutely fear where our government is taking health care. I’m just ready to pull myself completely out of the medical industry and learn the benefits of Chinese herbal medicine.
You misunderstand. I don’t take what you think personally. I just asked a question and would appreciate and answer. That is all.
This isn’t about me. It isn’t about you.
> Or if that choice is to smoke an unapproved plant of some kind.<
I would argue some drugs such as zocor and prozac are more dangerous than any plant you could smoke, or drink for that matter.
But that is personal opinion, not medical.
> Or if that choice is to smoke an unapproved plant of some kind.<
I would argue some drugs such as zocor and prozac are more dangerous than any plant you could smoke, or drink for that matter.
But that is personal opinion, not medical.
Look you posted to me first and obviously have some sort of problem with my “anecdotal” evidence as you called it. You also obviously don’t have any experience in nursing or Hospice or else you would have said so. I simply offered my experience to add to the debate.
I prefer to believe my own experiences first hand with this subject vs something someone else may put in a book or article.
Have a nice day.
And If the pain is too great, or the delirium / dementia is so severe, the person can’t serve or worship.
My religious beliefs are different from yours. Your statement would nullify any conversation with a good Baptist or an atheist.
The medicine and compassion are for the patient. A godd reason for the doctor - or the hospice nurse - to discuss end of life religious wishes with the patient before hand.
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You too!
>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.<
I also wanted to comment that these people you list, esp. Administrators and medical directors never step near a bedside.
What field do you specialize in Dr. Kopp?
I am just a small town Podiatrist but I am in the process of opening a prolife Catholic home hospice care office and assisting in opening another.
Ron Panzer of the Hospice Patients Alliance spent many years as a hospice nurse. The founder of the Catholic hospice for which we will be a sub chapter worked for many years as a hospice nurse prior to opening her own Catholic Hospice.
So my primary sources have several decades of hands on hospice nursing care between them.
I’m sorry for your recent loss. Your experience is very similar to ours when we lost my MIL 2 years ago. She had Parkinson’s. Her doctor suggested Hospice about 5 months before she passed, not to shorten her life, but because there were additional benefits she received that helped her live longer. The Hospice nurses did daily massages, helped feed her when she could no longer lift a spoon, got her an inflatable air mattress that was on a timer, which inflated different sections in sequence to stop bed sores from forming. She did well for a few months, but at the end, we had been warned she would no longer be able to swallow, and that’s what happened. Her DNR read no feeding tubes, no feeding through IV, so we knew it was time. The nurses showed us how to use the mouth swabs, but we couldn’t even use ice chips for fear she would aspirate and start choking, not even able to cough. They gave her minimal amounts of morphine, as she was unable to swallow, just what little could be dissolved under the tongue, nothing by IV or injection. She was with us another 5 days, before she passed. She slept a lot, but when she was awake, her eyes were clear, and she’d listen to Hubby and me talk to her. Not once did I hear anyone from Hospice suggest she should be given more morphine or other meds to speed the process up.
It saddens me that others have had more traumatic experiences, especially during such trying times in their lives.
So you are fixing to open an assisted living center and Hospice? I think that is fantastic! Your in for a lot of hard work and virtually no time off but do what’s in your heart.
I’m assuming you’ll be following Medicare guidelines but will you be able to run it without taking Medicare/ Medicaid pts?
I worked for a not for Hospice once but they still received Medicare benefits. Wasn’t sure how that worked.
So the guy who was nurse for years witnessed this li.d of abuse towards pts? I can’t imagine it. Maybe I’ve been fortunate being in the South. The rare times I’ve dealt with abuse was neglect by families.
Absolutely you always find out the pts religious beliefs at the beginning of care. My point was that people, if they are believers, make their peace with God while they’re still lucid and pain control does not effect that.
This will just be home hospice care, not inpatient or assisted living. We will contract with local assisted living and nursing homes as well as the local hospital for respite care. Someday is we are successful, we’ll build a free standing hospice unit.
We will be a participating provider with Medicare and all the major insurances. Non profit or for profit status does not affect Medicare or insurance participation.
If your loved one has COPD, is 83 and is being admitted to the hospital for the 4th time in 6 months, should heroic life-saving measures be considered appropriate or simply delaying the inevitable?
Finally, there are studies that show patients who are on hospice actually live longer than patients with similar prognoses not on hospice.
Lots of uninformed nonsense in this thread.
There are plenty of people posting their anecdotal experience on this thread, Dr. Kropp among them. I’ll not you did not denote his anecdotal posts as such. Even it up and you’ll have more credibility.
There are plenty of people posting their anecdotal experience on this thread, Dr. Kropp among them. I’ll not you did not denote his anecdotal posts as such. Even it up and you’ll have more credibility.
Thank you for your opinion.
You have been misinformed by someone. Hospice has no deadline, only requalification points. If a patient is still terminal at the qualification date, hospice care continues.
You are quite welcome.
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