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

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.”

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.”

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.

Source: “Prevalence of Formal Accusations of Murder and Euthanasia against Physicians,” Journal of Palliative Medicine, March (ncbi.nlm.nih.gov/pubmed/22401355/)

Didn’t realize it at the time, but my father was killed by morphine. The whole family gathered around his bedside for a 24 hr vigil while he was dying. They kept him on morphine to “ease his pain.” He slept peacefully around the clock until he was gone. My older sister died recently. I visited her in the hospital just a couple days before she died. She didn’t feel well but was talking and joking with us. Was surprised to learn the next day they sent her home to die. I went to her home and the family was gathered around her bedside as she slept, on morphine to “ease her pain” right up to her last breath. My brother’s father-in-law who was healthy and worked every day of his life even though he’d been retired for thirty years and was up on a ladder pruning a tree when he started having problems catching his breath. I mean when you’re over ninety years old you might sometimes have trouble catching your breath when you’re working hard. They took him to the hospital and they put him on morphine to “ease the pain” and he was dead within 24 hours. I visited him too with the family gathered around waiting for him to take his last breath. I’ve seen it happen enough times to realize this is not right. When I was in the hospital after they amputated my leg they put me on morphine. I was drugged up and basically out of it. They kept me in bed 24/7 wouldn’t even let me get up to go to the bathroom. They had some kind of device hooked up to me where if I ever felt pain all I had to do was push a button to inject a dose of morphine directly into my IV. Good thing I finally realized what was happening and had them disconnect it. Was up a couple days later, in therapy, then got the heck out of there. Was never so glad to get home in my entire young life.

When people are obviously dying in the very last stages of advanced cancer, artificial nutrition and hydration is not necessary.

Unfortunately, the industry has used the fear of this "prolonging a painful death," and used it to promote the removal of hydration and nutrition from those also who are not dying from cancer or advanced organic brain disease like jacquej described, but simply "failure to thrive" and dementia and stroke patients.

Deliberate dehydration in these latter circumstances, despite what the palliative care industry says, is a very uncomfortable (indeed, "tortuous") process, the symptoms of which must be masked by morphone, sedatives, haldol, etc.

A friend of mine is a hospitalist in Harrisburg. He says 50% of the patients admitted to the Catholic hospital where he works with advanced dementia or severe stroke are dead within a week. He calls it "7 day euthanasia," because these patients are not terminal unless you withdraw hydration. They are placed in palliative or hospice care, their food and water is withdrawn, they are given morphine, and they are dead in 7 days.

That is euthanasia, and it is occurring on a large scale in this country and abroad.

It is going on in hospice care as well as palliative care.

Yes, there are incredible individuals and individual hospice and palliative care programs out there offering compassionate, truly ethical care. I know some of them personally. But that is not universally the case. Far from it.

My neighbor had a husband who was married before, and was estranged from his children from that first marriage. He was diagnosed with emphysema..

He did have emphysema, but as soon as my neighbor would leave for work, her ill husband somehow found the strength to leave his sick bed, and walk around the backyard drinking beer.. all day long..

He’d get drunk, and retire to his sick bed before she returned home at 4pm..He also took meds (benzos), so he’d be totally wasted by the time she got home..

She would tell me how ill he was, and how he could barely walk, and was so weak, and ill..
“His eyes are glassy. His speech is slurred. I think this could be it. He’s dying.”
I would say, “He’s not dying. He’s higher than a kite. He’s been drinking and doing drugs all day.”

Basically he was a benzo’d up drunk who was trying to reconnect with his children by feigning his soon to be dead and gone act.

He even went so far as to get Hospice involved..Apparently, the government will pay hospice for a period of time, plus one extension if you don’t croak on time.

I told my neighbor that her husband would go in the backyard every morning when she left for work, and that some of his symptoms of “croakousity” were being on beer all day with benzo’s, and then later on benzo’s and oxcontin..

On the last day of his second government funded hospice extension, She was given morphine to administer to him by eyedropper on his tongue for his pain (that he really wasn’t in)..
At first, half hours apart, then fifteen minutes apart..He received his last drops of morphine at 11:15pm, after several hours of begging her to stop the morphine, that he had been faking the severity of his emphysema to reconcile with his kids, and he didn’t want to die...

She heard that plea, but continued the morphine She said Hospice had told him to give him all the morphine, even if he asked her to stop.

She said his breathing became slower, and his respirations shallower as the hours passed..I tried to explain that morphine is a CNS depressant, so yes, it will cause you to breathe, and everything else more slowly, and finally stop breathing.

At 11:45 pm.. He died.. right on schedule.. fifteen minutes before the government funding for hospice ran out..Sometimes being a manipulative old drunk has a high cost.

Thanks Jim.

We had my mother in law’s pain managed quite well with Fentanyl patches and oral opioids for breakthrough pain for her metastatic bone cancer. We cared for her at home around the clock 24/7 for months and she had very little pain. We had it titrated quite well, and coordinating with her oncologist and our pharmacist, we gradually increased doses of one or the other as breakthrough pain occurred. We had a visiting home hospice nurse (my mother in law’s decision, not ours) who was concerned one day when mom had some pain in her side. In hind sight, it was a met in her rib cage, but the hospice nurse wanted her checked out at the hospital. My wife had been with her 24 hours a day for weeks, and when she was admitted, they told us to go home and get some rest. They admitted her to hospice on the hospital floor for “pain management.”

They discontinued her Fentanyl patches and Vicodin and started her on the hospice pain protocol, liquid morphine, at 5mg every two hours. That didn’t touch her pain. When we stopped in the next day, she was writhing in agony, saying, “Lord, please take me now. Lord, Please take me now.” We were beside ourselves, we had managed her pain for months with very little major discomfort. We asked the nurses what the hell was going on, and they said, “Well, she has to request the pain medication, and she hasn’t requested any.”

She didn’t know she had to request it, she didn’t know where her nurse call button was, and she couldn’t reach it due to the pain if she had!

So we had to stay there at the hospital and go request it every 2 hours for the next two days. And 5mg of liquid oral morphine is NOTHING for someone who had been on Fentanyl patches and oral Vicidin for breakthrough pain for over a year.

She deteriorated rapidly and we had to BEG them to increase the morphine dose. They started her on long acting morphine pills (MS Contin) and we finally got her back home and spent days fighting with the hospice and their pharmacy contract company to get her back on the Fentanyl and Vicidin.

We were talking to a pro-life Catholic hospice during this for advice, and they wanted to know what the local hospice was planning for pain control once mom could no longer swallow, a point which was rapidly approaching. The local hospice said they’d simply give her the MS Contin pill as a suppository. You don’t roll over a woman with a history of spinal metastasizes and vertebral pathological fractures to give them a suppository for pain control several times a day!

She was becoming incoherent, repetitive, could no longer carry on a conversation, and was rapidly dehydrating.

So I finally blew up and coerced them (I won’t go into details, but it wasn’t pretty) into putting her back on the Fentanyl, and starting an IV for hydration. (It took them 5 days to get the IV order filled!)

As soon as she was rehydrated and the morphine was washed out of her system with the IV hydration, and the Fentanyl patches took effect, she was able to talk and carry on a normal conversation once again, and had better pain control without agitation or confusion compared to the morphine.

Our experience with hospice was not the wonderful experience others desribe. It was a harrowing experience in which we had to fight 24 hours a day for proper care. And I don’t have the energy to relate the battles we had to fight for proper care for my father in law, who passed away at home under hospice care (again, my mother in law’s decision, not ours) two years ago.

And why did they insist on the morphine instead of the Fentanyl? We’re still not sure, but Morphine costs pennies and makes the patient quiescent, which makes for less demands for active care and assistance. Fentanyl is expensive and the patient can maintain their activity level.

So that’s some of my direct experience of palliative care (in Fr. Gerard’s case) and hospice care (in my mother in law’s case) so my opinions on this subject are not based on hearsay.

And I’m in routine contact with the Hospice Patients Alliance, which fields calls and takes emails on cases like these every day. The stories are harrowing, and incredibly sad.

There are still some really good hospices and palliative care services, and even in ones that are questionable, there are truly angels or mercy doing their best in a terribly imperfect system.

But it is an industry that needs intense scrutiny.

Sometimes morphine use is 100% appropriate, and 100% appropriately dosed and administered.

I forwarded the original article to Ron Panzer of the Hospice Patients Alliance. He posted a good response on his web site:

Contrary to Some,
Medical Killings are Occurring in End-of-Life Care Settings

by Ron Panzer

April 29, 2012

Kevin O'Reilly has written an article, "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." Mr. O'Reilly is a writer for the American Medical News, a publication of the American Medical Association. This is my response:
As a patient advocate and President of the Hospice Patients Alliance, I've spoken with many hospice and palliative care leaders, physicians, staff as well as families and patients from all across the United States. It is truly disingenuous and misleading to state that "all of these treatments" "... are "broadly accepted as ethically and legally appropriate, "even if they have the secondary effect of speeding the dying process." What is occurring in hospice and palliative care settings is not a "secondary effect" but an intended primary goal today.
Anyone involved in end-of-life ("EOL") care knows that the praiseworthy and lofty goals of the hospice and palliative care mission asserted for decades that the services provided would "never hasten death." Today, the removal of nutrition and hydration, whether artificial or not, often combined with the permanent sedation of the patient ("terminal/palliative/total sedation") is being done in EOL settings, with the intent that the patient die.
This is confirmed by hospice physicians serving as medical directors, nursing directors, nurses, social workers, chaplains and other physicians all across the country. As mentioned in the article, many oncologists are often shocked that their patients suffering from a terminal illness, but in no way in the technical "active phase of dying" and therefore not expected to die suddenly, actually die within days or weeks of entering hospice and palliative care settings. All of these professionals can not all be wrong or ignorant. They know what is really happening.
It is relevant to note that one of the foremost authorities in modern palliative care, Joanne Lynn, MD confirms this and was quoted in a NY Times article, "'Passive Euthanasia' in Hospitals Is the Norm, Doctors Say" and said "when a patient is ready to die, I can stop nutrition and hydration, I can stop insulin and ventilation, I can sedate them." This is intended death, not death from a terminal illness! If such a leading authority on palliative care as Dr. Lynn admits that passive euthanasia of this sort is the "norm" in hospitals and health care, then the author's statements about "misunderstandings" and "misperceptions" are in error. The reality is that intended death is occurring.
In addition, Timothy E. Quill, MD and Ira R. Byock, MD (a leading hospice & palliative care physician), and the ACP-ASIM End-of-Life Care Consensus Panel suggest that when patients request "that death be hastened," terminal sedation and voluntary refusal of hydration and nutrition" be used "as potential last resorts that can be used" to hasten their death. [See: "Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids," by Timothy E. Quill, MD; Ira R. Byock, MD; and for the ACP-ASIM End-of-Life Care Consensus Panel. Annals of Internal Medicine, March 7, 2000 vol. 132 no. 5 408-414] Again, this is intended death, not from a terminal illness, but the actions of the physicians, and they do not require the nutrition and hydration to be "artificial" when such intended death is imposed.
Therefore, in addition to directly causing euthanasia by a lethal agent, contrary to AMA policy, hospice & palliative care physicians are urging and actually performing such euthanasia by stealth, using a method that is not direct euthanasia, but intends death, causes death and is done using sedative medications that in themselves do not cause immediate death, but cause the conditions that knowingly result in death.
In other words, the misuse of terminal sedation to end life is another form of euthanasia, properly termed "stealth euthanasia," which I have written extensively about in Stealth Euthanasia: Health Care Tyranny in America. It is not direct euthanasia as a lethal agent is not used to immediately cause death, and it is not true "passive euthanasia" because it is not simply withholding or withdrawing treatments.
The misuse of terminal sedation to cause death creates the situation where the patient cannot take in nutrition or hydration, whether artificial or natural, because he is in a medically-induced coma, and certain circulatory collapse occurs from fluid volume deficit in a few days to a couple of weeks, depending upon the patient's condition.
It may be "justified" using several bioethical arguments that devalue the value of the patient's life and assert that the patient would be "better off dead" than suffering from their terminal illness, debility, dementia, disability, etc. It is also justified by the principle of "patient autonomy," yet many of these patients are not requesting such imposed death through any means. In hospice today, there are very real concerns that the mission is being twisted into something other than what most people expect, i.e., end-of-life care, not imposed death.
It is no accident that families, staff, hospice and palliative care professionals are themselves warning that euthanasia, direct or passive, and stealth euthanasia are being performed in the EOL setting. The National Hospice & Palliative Care Organization is the actual legal and corporate successor to the former Euthanasia Society of America, and continues the twisting of the life-affirming mission of hospice and palliative care into something other than what it represents itself to be.
Using the doctrine of the Law of Double-Effect, the author, and those like him, assert that practices such as sedating a patient permanently, while also removing artificial as well as natural nutrition and hydration, thereby assuring death, are justified under the guise of their being a "secondary effect," when actually it is the primary effect intended; these practices are therefore forbidden by the Law of Double Effect, since the primary intent, i.e., to end life, is unethical.
Whether these practices that knowingly result in imposed death are justified by principles such as patient autonomy, beneficence or justice, or the misuse of the Law of Double-Effect, such justification is exposed as unethical when the AMA's own statement on euthanasia is considered, that "the societal risks of involving physicians in medical interventions to cause patients' deaths is too great to condone euthanasia or physician-assisted suicide at this time." In other words, the AMA already condemns the practice of physicians intending and causing death.
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.

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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.

Hard-wired misperceptions

Transformation in end-of-life care

ADDITIONAL INFORMATION:

Who’s calling palliative care “euthanasia”

Weblink

Contrary to Some,
Medical Killings are Occurring in End-of-Life Care Settings

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.

Hard-wired misperceptions

Transformation in end-of-life care

ADDITIONAL INFORMATION:

Who’s calling palliative care “euthanasia”

Weblink

Contrary to Some, Medical Killings are Occurring in End-of-Life Care Settings

Contrary to Some,
Medical Killings are Occurring in End-of-Life Care Settings