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 have seen doctors argue patients are not hospice appropriate and refuse to sign a hospice order only to have the patient die without hospice care less than 24 hours later. Additionally, even when the doctors know the patient is terminal, they frequently do not wish to have the conversation with the patient and simply wait for a hospital case manager to talk the family or patient into it after multiple hospitalizations in a brief period of time.
So had did that incentivized hospice thing work out for Terri Schiavo?
I don't think you've had experiences which comprise a representative sampling of hospice companies. JMO
Inevitable?
My dad is 76, smoked for 40 years, has COPD, and is on oxygen 24/7. He had 7 admissions in 9 months, and the doctors told him he had only 3 to 6 months to live.
That was twelve months ago.
And he has had no admissions since, and is in the process or retaking his driver's license, which he let lapse when the doctors told him he was "terminal."
I get real jaundiced towards people who throw around charges over the appropriateness of "heroic" life saving measures and "simply delaying the inevitable." You know what I'm saying?
Please.
Where did I argue that?
On the other hand, are you going to seriously argue that peoples lives are not being ended prematurely in hospice and palliative care by premature withdrawal of water and food, the discomfort of which is subsequently masked with morphine and/or haldol and/or benzos?
Because if you are arguing the latter, you are out of touch with what is now a common practice, but one that is damn near impossible to quantify regardless of your views.
The problem with Terri Schiavo’s end of life was the interference by lawyers and judges, not hospice. Judges can’t write medical orders, but they can - and did - order Sheriffs’ deputies to restrain nurses and doctors from providing care.
I was trying to find what the medicare payment for hospice care policies were for 2001, which is when my friend's husband utilized in home hospice care.
Jim, thank you for your action dealing with this euthanasia issue.
I lost my mother due to withholding of food and water that I could not stop due to issues whose details I'm not going to discuss publicly on the internet. Much has already been said on this thread with which I fully agree, and there's no need to repeat my own story which is all too similar.
I learned two things from that incident.
One was the importance of getting a good lawyer who shares pro-life convictions and understands the potential loopholes which doctors can exploit in “living wills,” and even then, reading every single word of anything that gets signed.
The other was a greatly increased respect for the role of Roman Catholic hospitals in end-of-life issues. My mother trusted her once-evangelical denomination, and when she woke up from a coma, without understanding what would happen, left the intensive care unit of a Roman Catholic hospital and fell into the hands of a hospice founded by one of the worst liberal professors at the official college of her denomination, a man whose evil theology I had fought against for nearly a decade. She thought she was going into a nursing home with care comparable to the hospital if needed, but once she lost consciousness, she was starved to death and nothing could be done because of what she had signed, despite very clear verbal statements made in the presence of several witnesses including me and an elder’s wife.
Not going to say more details here, Jim, but I want to commend you for what you wrote. Theology has consequences, and when it comes to abortion and euthanasia, those consequences can easily be fatal.
We simply cannot trust our doctors or our lawyers to have our best interests at heart; even if they mean well, they don't necessarily share our values, and lawyers may not understand loopholes in areas outside their ordinary scope of professional practice. The documents we sign could be our own death warrants if we're not careful.
For those of you who are Roman Catholics on this thread — keep demanding that your church enforce its doctrine at your hospitals. I am confessionally required to believe some very strong things about the Roman Catholic Church, just as the Council of Trent requires you to believe some very strong things about Protestants, but abortion and euthanasia are good examples of where conservative Roman Catholics and evangelical Protestants can and should work together. At least for now, we can typically trust Roman Catholic hospitals and unfortunately I cannot always say that about Protestant hospitals and nursing homes, even if they're supposedly evangelical.
Death is not unChristian. And facing it without fear is completely appropriate, religiously and psychologically. Putting 80 year olds on vents 4 or 5 times doesn't make us more of a culture of life.
I share your concern over the tendencies towards euthanasia in our elite's teachings and philosophies. I do not find them practiced with any sort of frequency in my area. I find the opposite. Oncologists doing chemo up to the patient's last breath. Internists hoping the cardiologist tells the patient there is no more that they can do for their CHF while the cardiologist believes that's the internists' job. Ditto for COPD and the pulms. And it is precisely of the secularity of our culture, not the religiousness, that they fear having "the talk" with their patients.
The average stay on hospice is around a week.
For whatever it's worth, Lil Flower, my mother is an additional example of a case where a hospice said they could not maintain a feeding tube. You say the hospice should immediately be reported. That's quite interesting, and I sure wish I'd known I could do that. I've been pro-life for well over two decades, but my focus has always been on the abortion issue, not end-of-life issues, and your post and that of Dr. Kopp have helped me a great deal in understanding things that I knew were wrong years ago but which I could not effectively argue against from a legal perspective.
I'm omitting some key details here for personal reasons, but am including what is legally and ethically relevant for making end-of-life decisions.
My mother died in her mid-sixties. Her history was that she had been a three-pack-per-day smoker for most of her life, resulting in COPD. She reported having completely stopped smoking a few years before her death, but years of heavy smoking had already done permanent damage. Some of that damage included severe low blood pressure causing weakness in her legs and arms that prevented her from walking, and eventually got so bad that she could no longer grip objects with her hands. The cause of this weakness was misdiagnosed and not recognized as being due to low blood pressure for an extended period, and that resulted in inadequate food and water since she couldn't eat by herself, leading to a declining health spiral with repeated emergency room visits due to fainting and other loss of consciousness until the COPD was finally properly diagnosed. Because she could not eat properly due to lack of ability to handle silverware at home, she suffered from extreme weight loss over a period of perhaps half a year, eventually went into a more serious coma, and was transported to an emergency room where she was expected to die. I was called from halfway across the country to participate in a family decision on withdrawing life support; when I discovered that meant withholding food and water, I absolutely refused, and fortunately she was in the intensive care unit of a Roman Catholic hospital where the staff understood my objections and called in additional staff members to try to deal with the situation.
During the argument over whether to remove her feeding tube, my mother continued to receive necessary nutrition and hydration to the point that she unexpectedly recovered, became fully conscious, and became very upset by what was happening. She ended up living several more weeks, but knew she'd probably die in the relatively near future, so rather than dying in a hospital, she wanted to go to a nursing home associated with her denomination, which was once evangelical but was quickly lapsing into liberalism.
The end result is she was placed into a hospice associated with the nursing home rather than the nursing home itself, lapsed into unconsciousness over the weekend when she couldn't eat or drink enough to sustain herself, and I discovered to my horror that she could not be put back on the feeding tube because of the institution's rules on the matter which, among other things, meant she couldn't be transferred to the part of the nursing home where feeding tubes could be restored.
I could do nothing under the circumstances because of documents my mother had signed much earlier in her living will which, once she woke up out of her coma, she clearly and repeatedly contradicted verbally in my presence and that of several witnesses. Once she lapsed back into unconsciousness, I could do nothing because of the living will.
I sure wish I had known at the time that I could report the hospice for what happened with her feeding tube. I have absolutely no doubt in my mind that my mother agreed to leave the hospital thinking she could be put back on a feeding tube if necessary, but once she lapsed into unconsciousness because she couldn't control her hands well enough to eat and drink by mouth, there was nothing more I could do.
Bottom line: people who say these things don't happen are simply wrong. Get your legal documents governing medical care written by a lawyer who is pro-life and understands the loopholes. If you can, choose a doctor, a hospital, and a nursing home that share your values. If you can't, make absolutely certain you have someone to advocate for you and make decisions on your behalf who understands what you want, and has the legal authority to follow your wishes.
The consequences of failure in situations like this could be fatal.
This discussion has been provided much enlightening information. I also appreciate those who have bravely shared their experiences on both sides. Thank you.
I wish that I, too, could relay a positive hospice experience, but unfortunately I can’t. Neither as a fill-in hospice caregiver (via a visiting burse agency), nor as a friend and family member of two patients in hospice care.
In your humble opinion, I'm sure.
I may not agree with your humble opinion however. I am in a geriatric specialty too though it's far from pulmonology or internal medicine. Nonetheless treating on average 80 geriatric patients a week I know better than to believe my dad's case is "the exception."
You work as a fill-in for a hospice company and you’ve had no positive experiences? It seems odd that your continue to work with them.
So what percentage of patients diagnosed as terminal do not die within 6 months?
And what percentage of patients in a similar condition as your father’s condition make it another 6 months?
Or they have an agenda.
What’s your agenda? (see my last post. )
My “agenda” is presenting clear information on hospice.
I sought a nurse on the floor to discuss this with....and asked she go off the record. She of course hesitated but eventually understood. As I had suspected the medication was indeed too strong and the cause of her problem. I asked the nurse if she would please ask the Dr. to decrease it, even if it might mean she'd have some discomfort. I would learn he did just that...and the hallucinations stopped and she was in no discomfort at all for lessening it.
The problem as I saw this was the family member was far too dependent on the Doctors..and my mother for that matter. As the nurse explained to me the Doctors see the patient for only a ‘very short’ time....it's ‘the nurses’ who care for them who ‘see’ the progress or the opposite throughout the day. Having this information I spoke often with the nurses who let me know the real comfort level of my mother....and I went thru them.. who then went to the Dr. if I thought something might be done differently.
Additionally my daughter in-law is an outstanding ER trauma nurse as well as worked on the floors and headed them. She has said the same thing.....get to know the nurses even though they change shifts....and it helps because you can then structure your visits when you know a particular one is on shift. I did and for that my mom was comfortable until time to go with the Lord.
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