End-of-life care: Pain control carries risk of being called a killer

AMA News ^ | April 16, 2012 | Kevin B. O'Reilly

[Brian Kopp DPM]

End-of-life care: Pain control carries risk of being called a killer

Accusations of euthanasia are common as patients, families and even other health professionals struggle to adjust to the new realities of end-of-life care.

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.

Nearly 1.6 million Americans received hospice care in 2010, up from about 25,000 in 1982.

“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.”

Hard-wired misperceptions

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.”

Transformation in end-of-life care

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.”

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 ADDITIONAL INFORMATION: 

Who’s calling palliative care “euthanasia”

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/)

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Weblink

“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)

[Brian Kopp DPM]

Drug interactions between Haldol and morphine

Edit this list

Results for the following 2 drugs:

Haldol (haloperidol)

morphine

Interactions between your selected drugs

haloperidol ↔ morphine

Applies to:Haldol (haloperidol) and morphine

MONITOR: Central nervous system- and/or respiratory-depressant effects may be additively or synergistically increased in patients taking multiple drugs that cause these effects, especially in elderly or debilitated patients.

MANAGEMENT: During concomitant use of these drugs, patients should be monitored for potentially excessive or prolonged CNS and respiratory depression. Ambulatory patients should be counseled to avoid hazardous activities requiring mental alertness and motor coordination until they know how these agents affect them, and to notify their physician if they experience excessive or prolonged CNS effects that interfere with their normal activities.

[cva66snipe]

If you are a physician you had a huge advantage dealing with your profession that most here will never have. You need to realize that. If the average Freeper started arguing over medications and dosages with “professionals” they’d be ignored at best or be accused of aiding an addiction at worst.

In my 27 years as caregiver I took on about seven doctors at once over medication. This had nothing to do with Hospice or terminal illness but rather a disabled person. She had PTSD from some bad things like instant quadriplegia, a misdiagnosed non heart ailment she took meds for 15 years needlessly and other things. But the real kicker came when she needed something to help her face some extensive oral surgery. A dentist a few years before had pulled her tooth and gave her Mepraghan. She went into a Coma and a temp of about 89-90 degrees. A patient later died in his dental chair from an unathorized anthieasa he was not qualified to do.

So she goes to a shrink and he gives her two antidepressants Trazadone and Zoloft. Oh the first couple of months she improved then she became highly agitated in a matter of a day. I rush her to the shrink and he says well lets up the meds see you in three months. By the time we get home she is hallucinating. We went to the ER. Because she could not think clearly enough to sign for treatment I was not allowed to sign for her either. I am her husband.

I go and make some calls to family because the doctor said he was not going to do any blood work, EKG, CAT Scan OR MRI despite her spinal stroke history. I go back in the ER and I finally find her in her wheel chair passed out unresponsive shaded closed on her room. I yelled Help Stat and the doctor came in and just stood there. I said she's unconscious do something and he said no. I said you stupid {word I will not post} psychosis or mental illness does not do this.

I loaded her up in the van and went to a level one hospital. They were very eager to help her. They got her conscious again then it started all over again. She is psychotic and we can not treat her we are calling the state. I waited and Mobile Crisis arrived. I proceeded to inform them in no uncertain terms this hospital was going to do something including testing. They agreed.

They took her of all meds but Ativan. Within about 36 hours she was pretty much herself again. Now you would think that would tell them something. Still no MRI. In walks Joe Shrink who never saw her before and says lets go ahead and up the meds {antidepressants}. In an hour the pills were brought in. Within another hour it all started all over. I am not a doctor but that is a bunch of red flags. She was out of it thrashing and talking about events I knew about. It was as if she was replaying her life.

I'm a Christian and I believe 100% in the power of prayer. Day Four I went to the Chapel in the hospital before going home for some sleep. My dad came in to relieve me. I got home and for some reason went on line and typed in Trazadone +Zoloft +Adverse reaction. Instant hits and the right ones. I read two articles and I was certain she had Serotonin Syndrome. I called my dad and said I know what's wrong with her and I'm on my way back right now don't let them give her any meds till I get there.

I went to the nurses station and requested to speak to the floor supervisor. I showed her the articles and they were highly credible sources. I said call the doctor {who wasn't our primary but a hospital contractor} and tell him. She said No we don't do that he comes in in the morning. I said OK then these are my orders. You will only give her the Ativan prescribed her. You do not have permission to give her any other medications.

Next morning the doctor came in madder than a hornet getting me out in the hall and said why did you stop her antidepressants? I said please just read this. He glanced at it and said that is pure rubbish. I said and the Pharmacology Professor who wrote is works where? It was a university hospital same university. He said oh well maybe it is then now lets see about getting her a transfer to mental facility. I looked at him ans said you mention that one more time and you will regret ever saying it. You were wrong. No one did a Physicians Desk Reference. His behavior became subdued and next morning she was back to being coherent but had partial amnesia some of which she still has. Next morning they came to get her for a MRI. Two bleeders in her brain one old and one fresh.

I've taken on Medicaid in my state as well. You just have to keep fighting and not back down. Hard to do sometimes. If my wife had not also been taking Xanax she likely would have died from this. Benzo's are the counteracting drug too Serotonin Syndrome. But I've learned what I know from help from nurses I used to work with and a computer if you use legit sources can be invaluable as well.

[Marcella]

“If the average Freeper started arguing over medications and dosages with “professionals” they’d be ignored at best or be accused of aiding an addiction at worst.”

No, Lurker, I’ve done it many times. I speak with a professional voice and tell them what has worked and hasn’t worked and I didn’t give up until they did it right.

I have also worn a white shirt and put my pin with my name on it with the word “Dr.” before my name (Ph.D. kind not medical doctor kind, but they didn’t ask), and the nurses did anything I said. They are conditioned to white and Dr. and jumped in hoops if I said do it.

I used every psychological ruse I had, to get done what needed to be done. Those employees are just employees and you are paying them, so tell them what to do. Don’t let them intimidate you, you intimidate them.

One time he was in a hospital room, ready to go home but the nurses wouldn’t do the paper work at their station. You are leaving and they are through with you so they don’t care if you stay in the room waiting forever. I rolled him out to in front of their station and had him ask for food, coke, etc. and I stood there and stared at them. They couldn’t stand it so got right on the paperwork and we were out of there really fast.

Don’t disappear, stay close to the nurses’s station staring at them and you will get what you need.

I have years of experience with hospital employees and doctors and I’m going to win and they are going to lose.

[Marcella]

“The ambiguity created by “stealth euthanasia’s” methods avoids the readily identifiable terms “euthanasia” and “assisted-suicide,” but results in imposed death just the same and is condemned by the AMA’s own ethical stance against intended death.”

This is exactly what I found when I investigated that hospice place. They were going to fill him with morphine and withhold water/food. I went through that place and looked at everything there. There was nothing to save a life. As a licensed EMT, I saw it for myself and knew what to look for to save a life and nothing was there. I stand by the name I gave them - “Death House”.

[RobinOfKingston]

Thank you for your reply. The “concomitant use of these drugs” was short term. From early August 28, 2011 to 1:20 pm August 29, 2011, an otherwise beautiful, warm summer afternoon. No longer any need for the recommended counseling.

But I do miss her terribly. Her photo sits on the desk in front of me, and to the left. It is one of those photos where the eyes follow you, no matter where you view it from. Even this photo projects her love and humanity.

I do miss her so.

[An.American.Expatriate]

Marcella, what you say is true - a hospice is a place for terminally ill patients to go to prepare for death. That is what they are. They are not treatment centers. If anyone claims they are, they are lying.

Some people choose them over suffering - others find it beyond consideration for themselves or thier loved ones.

I’m glad you found an option that was good for you and your husband.

[CitizenUSA]

It seems medical technology has advanced to the point where difficult end-of-life decisions must be made. People didn’t have a lot of options in the past. Now they can keep people alive well beyond where they once would have died.

Personally? I don’t think hydration or nutrition should ever be withheld from a patient (who can take them) in order to hasten death. On the other hand, I witnessed a loved one die a very long, excruciating death from cancer. There was point where the person no longer existed, and the only apparent options left were horrible, unremitting pain or drug-induced unconsciousness.

There’s a point where death is a blessing. I don’t want a doctor hastening my death, but I also don’t want one trying to keep me alive only to suffer mind-destroying levels of pain when I’m beyond hope. Unless someone has had a loved one go through a death like that, they have no business criticizing someone who has.

[HollyB]

I understand the whole concept, but after spending time there with a relative and noticing more than a dozen deaths in a week, I felt like I was in a death mill. Some people who were up the day before, were gone the next. A father was saying about his teen daughter, she had six months, but died 10 days after going to hospice..he was in shock. Well, the whole thing freaked me out.

[netmilsmom]

>>I have years of experience with hospital employees and doctors and I’m going to win and they are going to lose.<<

OMG, truth be told!

[Tribune7]

Thank you. Well said.

[trisham]

Thank you for sharing your experience. I know it wasn’t easy.

[hocndoc]

How I wish more families would keep their loved ones at home for their final days. But some just aren’t up to it.

Hospice should offer the option of home care. The ones I’m familiar with do.
However, there’s no reason to make these accusations, anymore than to say that all of the people on ventilators can’t breathe!

The definition of hospice care is that death is expected with in 6 months due to a serious illness.

Hospice in patient facilities are used for the last few days - they don’t cause death. The people who are admitted are only those in the last stages of an illness that’s killing them.

And yes, I’ve had patients “kicked off hospice Medicare because the excellent care the hospice nurses gave my patients better health. Two that I remember died in the hospital within a month of losing hospice nurse care. (And before we could fight the Medicare bureaucracy. ) One had unstable angina, severe pain and shortness of breath that her family couldn’t bear. Another lived alone, had no family, and had extreme COPD with frequent attacks. The hospice nurses made home visits, attended to their needs when they got worse.

[hocndoc]

May the Lord bless you for this post - but more for your loving care of your husband.

[MD Expat in PA]

Well said.

The truth about hospice care is that it is in most cases, compassionate care, compassionate to the patient and to their families. I knew two people, the nieces of my husband who both received in home hospice end of life care. One died in her late 20’s from acute leukemia within six months of her diagnosis. The other battled breast cancer for several years before it metastasized and went into her lungs and brain.

They were cared at home by dedicated around the clock hospice nurses. They were able to meet their inevitable end in the warm, comfortable and familiar surroundings of their home surrounded by family and friends and children who could be with them 24-7 in a non hospital setting.

In both their cases, the cancer treatment, chemo, radiation, etc. had stopped as they were fruitless and only palliative care, nutrition, fluids and pain medication like morphine was given. But in their final days and hours the pain would have been excruciating without the morphine.

The thing that some people don’t understand is that in the final days and hours before death, as internal organs start shutting down, fluids accumulate around the heart and in the lungs, making breathing a struggle and an excruciating one at that. What morphine does is to not only relieve the pain but it also depresses respiration, relaxes the patient and opens up their air ways. The fluid still builds up still ultimate kills them but the morphine makes the process less horrific – no desperately gasping and struggling, realizing they are drowning in the their own fluids and contorting their bodies or even having seizures or strokes as they gasp for their final breaths.

If a person is in their very last days or hours of life and administering morphine eases their pain, even if it by its properties, it hastens death by only a few hours, I do not consider that euthanasia.

[MD Expat in PA]

I understand the whole concept, but after spending time there with a relative and noticing more than a dozen deaths in a week, I felt like I was in a death mill. Some people who were up the day before, were gone the next. A father was saying about his teen daughter, she had six months, but died 10 days after going to hospice..he was in shock. Well, the whole thing freaked me out.

As hospice care is for the terminally ill, I’m not sure why you were so shocked that there were deaths. As far as some people “who were up the day before, were gone the next” sometimes that’s how death works and that part of the process is not fully understood but is often observed. It’s not all that unusual for a terminally ill person to experience a rebound and appear to get better and then very suddenly take a turn for the worse and die very suddenly.

As far as the dad who thought is daughter had six months; sometimes doctors, being themselves human, will not always be 100% truthful about a patient’s prospects. Right or wrong, sometimes doctors have a difficult time dealing with death themselves and will give patients and their families the most optimistic prognosis either because they themselves don’t want to give up hope or think that being 100% honest would be counter-productive. It is also possible that the initial prognosis of six months was reasonable but that the child suffered an unforeseen complication.

[Neoliberalnot]

May your dear Husband rest in peace—the undying loyalty of such a mate for life is truly inspiring.

I just watched my Mother-in-law die under hospice care a couple of months ago. It did make me feel uncomfortable to see her drugged up to the point where she couldn’t communicate with her family. Of course, being drugged up is the name of control of more than half of the patients in a nursing home. I honestly think my Mother-in-law was thoroughly addicted to pain medications—fentanyl, then other opiates. Yes, they die in a stuperous, pain-free state, but is it right?

[hocndoc]

Mariner specifically wrote about the comment that one patients died of overdoses, when the article is about attempts to control pain.

Brian is the instigator, here. He posted this, pinged his buddies, and then called you for help when he got the response he expected. The original post wasn’t aimed at you, only a rude accusation by Kopp.

There are real murderers out there, but this discussion and the original post are not about them. Kopp wants this to be about the care that includes pain control, too.

I am one of those doctors - an MD with an ethics degree, - who is accused of euthanasia because of pain control and other judicious, medically and ethically thought out care. I’m also pilloried by the utilitarian “bioethics” who assume intentional and even involuntary killing should be in the doctor’s job description.

The fear of pain is the usual reason for advocates of intentional euthanasia. The accusation that pain control necessarily involves killing the patient is flat out wrong and Brian knows it. I’ll bet that as a podiatrist, he’s used pain killers, even opiates.

[trisham]

Brian is the instigator, here. He posted this, pinged his buddies, and then called you for help when he got the response he expected. The original post wasn’t aimed at you, only a rude accusation by Kopp.

********************************

What a scurrilous charge.

[MD Expat in PA]

I just watched my Mother-in-law die under hospice care a couple of months ago. It did make me feel uncomfortable to see her drugged up to the point where she couldn’t communicate with her family. Of course, being drugged up is the name of control of more than half of the patients in a nursing home. I honestly think my Mother-in-law was thoroughly addicted to pain medications—fentanyl, then other opiates. Yes, they die in a stuperous, pain-free state, but is it right?

First of all, let me say that I’m sorry for you and your family’s loss. It is never easy under any circumstances. I’ve been there with my MIL and both my parents and other family members.

But then let me ask you a few honest questions. If your MIL was in excruciating and constant pain, would she have been at any point of having meaningfully communication with you? And was she in a nursing home or a hospice care facility? They are two very different things. I do not BTW have a very good opinion of most nursing homes from what I’ve observed. My experiences with those I’ve know in Catholic hospice care, both in a facility and with in home care, is vastly different than what I observed in commercial “nursing homes”.

As far as being “addicted” to pain meds, if a person is in their final days and hours of life, what difference does that really make if they are addicted? It’s not as if a dying person in their very last days or hours of their life is going to suddenly get up out of their bed and hold up a pharmacy looking for drugs or hold you up at the ATM looking for cash to support their “drug” habit. The sad thing is that many people in chronic and debilitating pain are now being denied medication out of fear of addiction. While some people who are addicts and not in need of pain relief, their abuse of the system means that many who are in need of such meds are treated like addicts whether they are or aren’t.

Yes, they die in a stuperous, pain-free state, but is it right?

So what is the alternative? Withhold all pain meds from the terminally ill and dying? Would you really want that for someone you care about?

[surroundedbyblue]

“Brian is the instigator, here. He posted this, pinged his buddies, and then called you for help when he got the response he expected. The original post wasn’t aimed at you, only a rude accusation by Kopp.”

B.S.