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NHPCO offers position statement on palliative sedation
Medical treatment should be used rarely
"Palliative care refers to patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.1
The National Hospice and Palliative Care Organization (NHPCO), in a special article outlining its position statement on palliative sedation, starts by indicating what it believes palliative care actually is. That's because, according to the paper's authors, what is meant by palliative care and palliative sedation, in particular is often misunderstood, even within the medical community.
One of the primary misunderstandings about palliative sedation is that it hastens death, according to Timothy W. Kirk, PhD, chair of the Palliative Sedation Task Force at NHPCO and assistant professor of philosophy, City University of New York (CUNY) -York College, in Jamaica, NY.
Because of this lack of clarity, as well as a growing body of literature and conversations on the topic, the NHPCO decided to issue the position statement, Kirk tells Medical Ethics Advisor.
"There was a minority of folks who were thinking that this was equivalent to euthanasia and should be banned, so that the discussion in the health care literature, and especially the palliative care literature, was really starting to accelerate," Kirk explains. "And in the past five years or so, there was a . . . flurry of studies published with empirical data that enabled the discussion to move from kind of a theoretical discussion of what is this to actually, what are the outcomes?
"So, if people thought that this hastened death, there were now studies to show that it didn't hasten death. Because there was new evidence, [and] because there was accelerated discussion in the literature . . . we thought it was a good time to revisit the issue and to offer an updated resource based on those developments."
In a special article on the position statement published in the May 2010 issue of the Journal of Pain and Symptom Management, the NHPCO accepts the National Quality Forum's definition of palliative sedation as the "lowering of patient consciousness using medications for the express purpose of limiting patient awareness of suffering that is intractable and intolerable."1
The article goes on to say, "For the limited number of imminently dying patients who have pain and suffering that is (a) unresponsive to other palliative interventions less suppressive of consciousness and (b) intolerable to the patient, NHPCO believes that palliative sedation is an important option to be considered by health care providers, patients, and families."1
Importantly, the NHPCO position paper indicates that "this statement addresses the use of palliative sedation only for patients who are terminally ill and whose death is imminent."
The treatment has been referred to in the past as "total sedation" or in some instances, "terminal sedation."
"I think if you were to do a search in Medline, and look at the publications in the last five years or so, you would see a shift [in terminology] toward palliative sedation," says Kirk. "And the shift was intentional, because the shift was away from terminal sedation, because there's now evidence that it doesn't hasten death. And it was away from total sedation, because if it's done properly . . . it's going to be titrated where the patient's going to be sedated just enough, so that their suffering becomes tolerable."
What palliative sedation is not
Palliative sedation is not euthanasia, which is intentionally causing another person's death, and it is not physician-assisted suicide, in which a physician provides drugs that the patient then ingests to bring about his or her own death, according to the authors.
Importantly, euthanasia is not legal, whereas physician-assisted suicide can be selected by terminally ill patients in only three states in the United States currently: Oregon, Washington, and Montana.
"Palliative sedation is legal and is an appropriate clinical option . . . Indeed, the U.S. Supreme Court has acknowledged palliative sedation as a safe, legal, and reasonable alternative to assisted suicide. Palliative sedation does not ask patients, family members, or health care providers to violate the law."1
Position statement basics
Describing palliative sedation as "an important tool among the spectrum of therapies available in hospice and palliative care" for patients who meet the description outlined previously, "NHPCO "supports making the option of palliative sedation, delivered by highly trained health care professionals, available to patients."1
"Part of what we found both in an informal survey of NHPCO member hospices and what we found in the literature, and what I've been finding, because I've been doing a lot of speaking around the country on this topic, is that there are folks who are delivering palliative sedation or who think they're delivering palliative sedation who really aren't doing it in a way that is driven by evidence," Kirk notes.
"They're just kind of turning up pain medicines to the point where they begin to have a sedating effect," he says. "And I think they might be doing this because they don't know that there are tested and evidence-based protocols using different drugs, not pain drugs, to safely induce palliative sedation. Because if you just start turning up pain drugs until patients fall asleep, [then] you are in danger of hastening their death. But that's not really palliative sedation."
There are, Kirk explains, "evidence-based protocols" available that largely use benzodiazepines, as well as some anesthesia drugs, "to directly bring the patient into a state of reduced consciousness, where that's the primary intent . . . You can administer the drugs safely, and you don't run the risk, of, say . . . suppressing the central nervous system, like you would if you just turned up opioids in a way that wasn't careful or safe."
Another declaration from the position statement, in part, is: "Since the goal is symptom relief (and not unconsciousness per se), sedation should be titrated to the minimum level of consciousness reduction necessary to render symptoms tolerable. For some patients, this may be total unconsciousness. For most, however, it will be less than total unconsciousness, allowing the patient to rest comfortably but to be aroused."1
The position statement also recommends that because "palliative sedation is a medical treatment, there must be a physician with expertise in palliative care leading the intervention."1 Also, NHPCO "recommends the practice of convening an interdisciplinary conference specifically about the use of palliative sedation for each patient for whom it is being considered. Such conferences should include practitioners from many disciplines . . ."1
Palliative sedation to be used "rarely"
The most challenging aspect of determining when to use palliative sedation is that "it would be easy to go to it too quickly," explains Margaret M. Mahon, PhD, RN, FAAN, advanced practice nurse in an inpatient hospice, and associate professor, School of Nursing, George Mason University College of Health & Human Services, Fairfax, VA. Mahon co-authored the paper and is also on the NHPCO palliative sedation task force.
"My biggest hesitation or reservation is that I think it's too easy to say, 'Let's just sedate him,' instead of using exquisite assessment skills to say, 'What can we do for this person, what are the symptoms with which she's living, and how can we make them better?' And too few people have that knowledge," Mahon says.
In Mahon's experience, palliative sedation is utilized extremely rarely.
Mahon describes her experience with palliative sedation as having it occur "in [the] single digits over a multi-decade career." Researchers have found that it happens, and several of the reports suggest upwards of 45% of cases, she says. However, Mahon, working with physicians she says she "respects a lot," has seen it used eight times in 30 years, "so this would be very, very rare."
The paper suggests that the "use of palliative sedation in terminally ill patients has been reported between 1% and 52%. NHPCO supports the use of palliative sedation only in cases where alternative interventions have been exhausted or are otherwise unadvisable . . . ." and refers to the upper range as "problematic."1
"It's kind of hard to make judgments about which percentage of your patients should be receiving this sedation . . . because some hospices deal with very sick patients, and, as such, we would expect them to use sedation more frequently," Kirk explains. "Other hospices . . . have a more disparate sample of patients who are less complicated, less acute, and you would expect them to use it less. I think that what we were trying to highlight is that one way to think about whether or not you're using sedation appropriately is to look at the prevalence of cases per year with which you're using sedation," he tells MEA.
"The way we recommended sedation, which is consistent with how the experts in the field recommend it, is that you do this when everything else has failed, because it limits or takes away patient consciousness, and that's a real loss . . . they can no longer communicate well with families; they can no longer express their wishes; and hospice has always been about really trying to preserve [the] patient's control until the end," Kirk says.
No consensus on existential suffering
Despite the fact that, traditionally, hospice has been geared toward treating all types of patient suffering, the task force could not reach a consensus on whether palliative sedation should be utilized for existential suffering.
In the commentary section of the paper, the authors define existential suffering as "suffering that arises from a loss or interruption of meaning, purpose, or hope in life."1
"Importantly, there is no widely agreed-on definition of existential suffering. In the palliative care literature, it is often used to connote suffering that is not physical in etiology. In this document, the term is used to refer to suffering arising from a sense of meaninglessness, hopelessness, fear, and regret in patients who knowingly approach the end of life."1
Kirk explains that "one of the great strengths of the hospice model historically is that it has gone beyond physical suffering, and it has addressed psychosocial distress and family distress things like that.
"So, we wanted to keep sending the message that suffering that was primarily nonphysical is still an important thing for hospice to address. What we couldn't decide as a task force . . . and we did exhaustive literature reviews, and we had 10 internal and external peer reviewers look at this, and what we came up with was kind of a state of the literature, which found, interestingly enough, people are for and against it," Kirk says.
The more the task force discussed the topic of existential suffering, the more it "became clear" that there were "very practical difficulties in endorsing sedation for existential suffering,"Kirk says.
"One of the main practical difficulties is that although there is a very small amount of evidence out there it's still growing what it shows is that in the timeline of the disease . . . from diagnosis to death, whereas the uncontrolled physical suffering tends to happen in the last few days of life, the uncontrolled existential suffering tends to happen very soon after the diagnosis, when the patient begins to realize that they're going to die that projects and goals they had for the future might turn out to not be accomplished, that they're going to be leaving their families...," Kirk says.
Therefore, because the paper only addressed sedation at the end of life, "if you were to sedate someone for existential suffering, you would likely be sedating them when they still had months left to live," Kirk adds.