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)
I understand, from a religious perspective, that when the "body" is dying the "soul" is preparing for flight, if you will, and has no need for food or water. That the patient has a sense about this and why they request less and less water and don't want either food or drink.
I saw this occcur with my mother, who was a nurses aid for many years, and she knew how the nails start to change color as the body dies....I saw her checking hers often the last two weeks. In the last two or three days she would only ask for ice chips...to wet her lip... and then not even that.
So I have to agree fully with cancer patients when in the last mile there is no need...they're getting ready to go to their heavenly home.
Yep..that's exactly what my mom did...I was shocked when I got there to visit and she was chit-chatting and laughing with family members..sitting up in bed no less...but the nurse explained to me, when I inquired about this happening, that it is very common.
To me it just seemd like God was giving the family a last 'family moment' before she left..and she did die two days later.
trisham said:”Anecdotal evidence is simply not very reliable”
Anecdotal evidence is one thing but lil Flower was speaking of her personal experiences that she had to document as part of being a case manager for a Hospice company...documentation that could be used against her if not properly followed thru.
The legal premise when used in court cases against nurses is “If it wasn’t documented, it wasn’t done.”
Michael Mathis RN(26 years and counting)
What conclusions have you come to about hospice based upon your experience and this thread, specifically?
My religious beliefs are different from yours. Your statement would nullify any conversation with a good Baptist or an atheist.
You've never read about or don't believe in deathbed conversions such as in Luke 23?
40 But the other criminal rebuked him. “Don’t you fear God,” he said, “since you are under the same sentence? 41 We are punished justly, for we are getting what our deeds deserve. But this man has done nothing wrong.” 42 Then he said, “Jesus, remember me when you come into your kingdom.[d]” 43 Jesus answered him, “Truly I tell you, today you will be with me in paradise.”How could Dismas have converted in the midst of the agony of crucifixion if your first statement is true?
If your first statement is false, how many deathbed conversions are thwarted by terminal sedation?
Between 4 traumatizing experiences with 3 different hospice care providers & an experimental cancer treatment program, (the details of which I will not share), the horror of the Terry Schaivo incident, and the "peek behind the curtain" at who is funding the "evolution" of hospice care, I personally have a very negative opinion of hospice. However, out of respect for others here who are dealing with the raw grief of recent loss, I'm not going to salt their wounds by enumerating my grievances. My own grief is too fresh for me to be objective. However, I'm sincerely glad for those who have had good hospice experiences or who have provided exemplary hospice care.
We know that none of the men on the cross that morning were in so much pain that they were unable to worship. And One had no need for conversion. (And who’s to say that the man who asked Jesus to remember him had not been converted and even baptized before. That’s the argument of many Church of Christ preachers.)
Nevertheless, different people have different pain and even different pain tolerances.
My own mother, on the way into the hospital for her last admission, chirped up at admissions with, “I have the best insurance there is: Jesus Christ!” On the day she died, the sheets hurt her legs, a breeze caused her to cry out in pain and we couldn’t get her pain under control at all, even with doses that should have knocked her out. In addition to (probably because of) paraneoplastic neuropathies, she had a series of lacunar infarcts that made her brain CT look like Swiss cheese. She was barely thinking and talking nonsense.
(She died of another stroke while in the MRI machine, with me at her head, singing to her. Even though our family had made our wishes that she not be resuscitated, the neurologist wanted this one last test, the paper work wasn’t finished, the hospitalist hadn’t signed the order and I had to interfere to prevent a full code.)
Perhaps if you’d studied in San Antonio, you’d have more first-hand experience. The Family Medicine residency program where I trained took the Podiatry residents for a few months of training on the in patient medicine service.
Thanks for sharing this.
And Yes, San Antonio is a highly regarded Podiatry residency in our specialty, for good reason.
I stayed close to home and completed my residency locally.
>If your first statement is false, how many deathbed conversions are thwarted by terminal sedation?<
Why are you having difficulty understanding that giving a person morphine at the end of their life is not “terminal sedation?” Why do you want people to hurt and be uncomfortable when they don’t have to be? I find those who are so opposed to pain meds haven’t had enough pain to need them, yet.
Morphine is not some boogy man drug. It is very effective at quick pain relief, but it is also short lived. Within 2-3 hrs it has worn off and you have to administer it again.
My husband worked, drove, etc. for 8 months taking a higher dose than average of oxycontin. He had a broken hip due to the disease avascular necrosis and due to family issues had to postpone his surgery. I think its cruel not to at least try to relieve someones suffering just because a family member or caretaker has some unfounded fear of pain meds. Do you know how many times I’ve been told by family members they don’t want their dying loved one to have a narcotic for pain because they fear their loved one will become addicted to it! It leaves me scratching my head but some people really have a hard time dealing with death so they cling to ideas that somehow help them avoid the elephant in the room: that their loved one is dying.
I assure you, I know the difference between proper pain control and terminal sedation. Morphine can be used for proper pain control. It can be and is used in conjunction with other meds for terminal sedation, and it can be and is used to mask the symptoms of pain and discomfort when water and food are prematurely withdrawn to bring about a premature death.
Why are you having difficulty grasping that these latter incidents are well documented and going on in segments of the hospice and palliative care industry?
Why do you want people to hurt and be uncomfortable when they don’t have to be?
Where have I said I want people to hurt and be uncomfortable? That is the false rhetoric of those who are trying to push the euthanasia agenda, if you weren't aware. Careful falsely employing their rhetoric. Folks might start to question your motives when you employ the tactics of the euthanasia promoters.
>Careful falsely employing their rhetoric. Folks might start to question your motives when you employ the tactics of the euthanasia promoters.<
Well I don’t give a shit what other people think of me. I also don’t give a shit what tactics euthanasia promoters use , either. I’m just telling you that you can use morphine, ativan, and other medications to control restlessness and pain without it becoming terminal. However, keep in mind that the person in question is in fact dying. And I really think some people are so frightened by that fact, that they grasp at straws to make some sense of it all.
Just so long as they really are in the process of dying, we’re in agreement.
The problem we’re talking about in this thread is when it’s employed to facilitate a premature death.
I don’t think you grasp or admit that this is going on, or how prevalent it is becoming.
You’re right I cannot grasp it. You have only heard these things happen. You have personally never seen it yourself. I have first hand knowledge and experience in Hospice and have never seen, nor heard of from other colleagues, what is claimed here. I will go with what my own eyes have seen vs something you have heard second hand.
If I’m shown otherwise with facts, then I will certainly acknowledge it.
I did mention earlier in this thread that I can certainly picture this evil administration turning Hospice into something evil, because they are evil.
Have you even read this thread?
I've sat down and talked to Terri Schiavo's brother, sister, and mom. Their foundation fields calls about cases like the ones I'm describing every day. So does Ron Panzer of the Hospice Patients Alliance, who I talk to on a regular basis. Are you calling them liars?
I'm glad you had the opportunity to work in a good hospice where these things apparently weren't happening.
But you are in denial about the reality going on elsewhere in some segments of the hospice and palliative care industry.
How bizarre that that the medical community which espouses euthanasia resists giving enough pain medication to make someone comfortable because it might kill them.
I guess by denying the pain medication, they think they can build a better case for euthanasia so people don’t suffer unnecessarily.
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