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Stop My Dad’s Suffering: Bridging the Gap Between Comfort Care and Euthanasia

Jessica M. Turnbull, MD, MA
Jordan Potter, PhD
Steven Shields, JD, MA


Case Study
A 53-year-old man with amyotrophic lateral sclerosis was admitted to the intensive care unit (ICU) with acute respiratory failure due to community-acquired pneumonia. Before this admission, he had enjoyed a quality of life that included living on his own in a single-story, wheelchair-accessible home, shopping for himself, and managing his own finances. In the six months prior to this admission he was admitted to the ICU three times for acute respiratory failure. With each admission, the time he stayed out of the hospital became shorter, and the time during which he required mechanical ventilator support became longer.
 
Two weeks into the current admission, he has already failed two extubation attempts due to an ineffective cough and the inability to spontaneously take breaths of adequate tidal volume. When sedation was minimized, he had the capacity to make medical decisions for himself. He affirmed information in his advance directive that his daughter serve as his surrogate decision-maker and that he does not wish to undergo tracheostomy. Agitation with prolonged sedation interruptions precluded continued care without restarting sedative infusions. The intensivist met with the patient’s daughter, and a plan was made for continued care on the ventilator with the goal of liberation from the ventilator in the coming days.
 
A week later, he developed worsening hypoxia, prompting increased ventilator support. Chest radiograph suggested ventilator-associated pneumonia, and empiric antibiotics were initiated. The intensivist met with the patient’s daughter again, who told the intensivist that she thought her father was likely “tired of fighting.” She said the past six months had been hard on him, and he felt he “never really got better” after each hospital admission. “He always knew he’d die from pneumonia,” she stated sadly. “Maybe this is the time. When he came into the hospital this time, he made me promise I wouldn’t let him suffer.” With this, the intensivist broached the topic of withdrawal of life-sustaining therapy, and the patient’s daughter consented to palliative extubation.
 
The next day, the patient’s family gathered, his sedation was optimized, and he was palliatively extubated. After extubation, he required frequent suctioning despite administration of glycopyrrolate and sublingual atropine, and he breathed with slow, irregular, sometimes moaning breaths. His family become upset that the patient was suffering and asked the ICU team if they could give him medication to “make this stop.”
 
Ethics Analysis
How should healthcare professionals respond to family requests to hasten death for patients who are suffering at the end of life? Requests of this nature are commonly encountered by healthcare professionals working in ICUs. Yet, while common, end-of-life scenarios as described here are complex and not always easily resolved, and these situations may engender conflicts between healthcare professionals’ duties and ethical obligations to patients.
 
The principal ethical issue in this case revolves around the healthcare team’s competing obligations to benefit the patient and minimize his suffering while also honoring the general ethical (and legal) prohibition against purposefully hastening death. Preventing and/or minimizing harm or suffering during the dying process is a fundamental ethical obligation of healthcare professionals. Furthermore, knowing that the patient’s values and goals—as expressed by both the patient himself and his surrogate decision-maker—are consistent with a comfort-oriented plan of care adds urgency to the healthcare team’s obligation to adequately treat his symptoms.
 
Yet these ethical obligations are juxtaposed against the competing ethical norm that healthcare professionals should not purposefully hasten the death of their patients. And, while this ethical norm is changing worldwide—as evidenced by the increasing number of nations, states, and territories where some sort of physician assistance in the dying process for terminal patients is legally available—in the United States, purposefully hastening a patient’s death via physician administration of a lethal dose of a medication (ie, active euthanasia) is still illegal in every state.
 
One option for the healthcare team that may be agreeable to the family while still honoring the healthcare team’s ethical obligations is the practice of palliative sedation. The American Academy of Hospice and Palliative Medicine defines palliative sedation as “the intentional lowering of awareness towards, and including, unconsciousness for patients with severe and refractory symptoms.”1 However, recent research on healthcare professionals’ perspectives of palliative sedation suggests that, while on the whole, the practice of palliative sedation has increased in recent years, many healthcare professionals experience conflict and moral distress about pursuing palliative sedation. This is primarily due to concerns regarding the practice’s morality and legality given its potential to hasten the patient’s death via suppression of the respiratory drive.2
 
While this is a reasonable concern, there is growing evidence from several studies completed over the past decade suggesting that patients undergoing palliative sedation at the end of life do not experience a hastened death when compared to similar patients who have not been palliatively sedated.3-5 But even if there are cases where palliative sedation may hasten death, there is strong support within the field for the ethical justification of palliative sedation via the logic of the principle of double effect. This principle states that actions with both good and bad consequences can be ethically justifiable so long as (a) the action itself (eg, sedation) is not inherently immoral, (b) the good consequence (eg, symptom control) is proportional in value to the bad consequence (eg, death), and (c) the bad consequence is merely foreseen but not intended. All of these criteria can be met in appropriate cases of palliative sedation.6
 
Ultimately, then, in these cases there is strong ethical support to adequately treat patients’ symptoms, even to the point of palliative sedation, on the grounds that preventing or minimizing harm is fundamental to the ethical practice of medicine. For this patient, presenting the option of palliative sedation to the family, and exploring with them whether this plan is consistent with the patient’s values is a reasonable response to the family’s implicit request to hasten the patient’s death.


References

  1. American Academy of Hospice and Palliative Medicine. Statement on Palliative Sedation. December 5, 2014. Chicago, IL: American Academy of Hospice and Palliative Medicine. http://aahpm.org/positions/palliative-sedation. Accessed September 23, 2019.
  2. Leboul D, Aubry R, Peter JM, Royer V, Richard JF, Guirimand F. Palliative sedation challenging the professional competency of health care providers and staff: a qualitative focus group and personal written narrative study. BMC Palliat Care. 2017 Apr 11;16(1):25.
  3. Maltoni M, Pittureri C, Scarpi E, et al. Palliative sedation therapy does not hasten death: results from a prospective multicenter study. Ann Oncol. 2009 Jul;20(7):1163-1169.