Hospice treats physical, emotional suffering
"Everyone's suffering is different"
Margaret M. Mahon, PhD, RN, FAAN, who serves on the Palliative Sedation Task Force of the National Hospice and Palliative Care Organization (NHPCO), says that too few people know what palliative sedation truly is.
"I think most of us who take care of patients didn't get a very good education in excellent symptom management, so [many] people don't know how to take care of pain and dyspnea and anxiety and delirium and all these symptoms that truly, truly cause physical suffering," Mahon tells Medical Ethics Advisor.
"So sometimes, instead of saying, 'This patient has three sources of pain, and we really need to be aggressive about addressing each of them, it's easier just to sedate someone, because it's not part of basic education; so it's a challenge," she says.
Mahon maintains that "there never can be" general assessment tools to determine if a patient is a good candidate for palliative sedation.
"Because again, everyone's suffering is different; everyone's disease gives them different symptoms, so even if we just keep talking about physical symptoms, we know, for example, that depending on what you read, 80% to 95% of patients' pain can be taken care of with oral medications," she says.
"So, what does that pain mean? Belly pain is different from pain that comes from the spine, feels different from pain that comes from a heart attack, and each of them would be managed differently and that's just dealing with pain," she explains.
Patient- and family-centered focus
"In all cases, care must be patient- and family-centered." This is one of the statements in a paper co-authored by Mahon and published in the Journal of Pain and Symptom Management in May 2010 on the NHPCO's position statement on the use of palliative sedation in terminally ill patients for whom death is imminent.
The paper also suggests that all health care providers who provide palliative sedation "should be engaged in ongoing education. This education should address symptom assessment and management as well as the ethical considerations related to use of palliative sedation."
When the health care team suggests palliative sedation as a medical option to alleviate patient suffering, there is "a real range" of responses from the family, Mahon notes. Sometimes, the families themselves suggest it as an option.
"Sometimes families will say, 'Look, I know you can do this; will you just make it be over?' So, sometimes families will put in a request for assisted suicide or assisted death, which is a completely different thing. That being said, when we bring up sedation, sometimes families will misunderstand . . . [when we say] that we have not been able to get her symptoms under control, and we would like to sedate her for 24 hours and then lighten the sedation and then see how she does. So, some families would see it as a request to hasten death. . .," she says.
Mahon says that health care providers also suffer when they are unable to get patients' symptoms of pain or other suffering under control.
"Now, again, for the people who do this really, really well and there are too few, but those are the ones who do it very, very rarely they are truly suffering, in my experience, at the inability to get the symptoms under control," she says. "If you're trying everything, and as we say, we just can't get ahead of the patient's pain, that's agonizing."
Existential suffering and palliative sedation
Mahon maintains that "suffering is more than physical." She also suggests that "this is where the [NHPCO position] statement can be challenging for people, and it's why we chose not to address existential suffering."
The statement says: "As with any other type of suffering, NHPCO believes that hospice and palliative care professionals have an ethical obligation to respond to existential suffering using the knowledge, tools, and expertise of the interdisciplinary team.
"Whether palliative sedation should be a part of that response is an important, growing, and unresolved question. Having carefully reviewed the data and arguments for and against using palliative sedation for existential suffering, the Ethics Committee is unable to reach agreement on a recommendation regarding this practice."1
NHPCO suggested that providers "carefully consider" the question and engage in further ethical discussion on the topic. "NHPCO also encourages research within and across disciplines to build an evidence base supporting multiple interventions for existential suffering."
"I've taken care of a lot of people who are dying, and true existential suffering is very, very rare," Mahon says. She says most people live with the disease from which they will die for sometimes years before they die. This time is a good opportunity to work on such things as relationships.
"So, if we view suffering as physical, but also psychological and spiritual and interpersonal, and have the resources and the team to address those things, then that is a much better way to approach the pain rather than to say, 'Let's sedate the patient' as a way of getting around the suffering, rather than truly addressing it," Mahon explains.
Although the task force concluded that existential suffering exists,"we don't have the resources to describe it well enough right now," Mahon says. "There is no consensus on what it is; and because there is no consensus. . . it might be a bit of hubris to say, 'Even though we can't tell you exactly what it is, here's what you should do for it.'"
Regarding existential suffering, Mahon says, "I'm not sure we will come up with a consensus, and I'm not sure we should."
"No, I think we have a responsibility to assess patients extremely well, and we have an equally important but separate responsibility to know how to address their symptoms very well. And once we do those extremely well, the perceived need for palliative sedation as a first-line therapy, rather than a last-line therapy, hopefully will be obviated," Mahon notes.
- Kirk TW, Mahon, MM. National Hospice and Palliative Care Organization (NHPCO) Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients. Journal of Pain and Symptom Management. 2010;39;5:914-923.