SUPPLEMENT ARTICLE

Judging the Quality of Mercy: Drawing a Line Between Palliation and

AUTHORS: Wynne Morrison, MD, MBEa,b and Tammy Kang, MD, MSCEa,c abstract aPediatric Advanced Care Team, bDepartment of Anesthesiology Clinicians frequently worry that medications used to treat pain and c ’ and Critical Care , and Division of Oncology, Childrens suffering at the end of life might also hasten . Intentionally has- Hospital of Philadelphia, Philadelphia, Pennsylvania tening death, or euthanasia, is neither legal nor ethically appropriate in KEY WORDS end-of-life care, ethics, euthanasia, palliative therapy children. In this article, we explore some of the historical and legal ABBREVIATION background regarding appropriate end-of-life care and outline what PAS—physician-assisted distinguishes it from euthanasia. Good principles include clarity of Dr Morrison contributed to the conception and design of this goals and assessments, titration of medications to effect, and open work, and drafted the initial version of the manuscript; Dr Kang communication. When used appropriately, medications to treat symp- contributed to the conception and design, and critically revised toms should rarely hasten death significantly. Medications and inter- the document for important intellectual content; and both authors approved the final version. ventions that are not justifiable are also discussed, as are the implications fl www.pediatrics.org/cgi/doi/10.1542/peds.2013-3608F of palliative sedation and withholding uids or nutrition. It is imperative that clinicians know how to justify and use such medications to adequately doi:10.1542/peds.2013-3608F treat suffering at the end of life within a relevant clinical and legal frame- Accepted for publication Nov 12, 2013 work. Pediatrics 2014;133:S31–S36 Address correspondence to Wynne Morrison, MD, MBE, Anesthesiology and Critical Care Medicine, Children’s Hospital of Philadelphia, 3401 Civic Center Blvd, Room 7C05, Philadelphia, PA 19104. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2014 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose. FUNDING: No external funding. POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

PEDIATRICS Volume 133, Supplement 1, February 2014 S31 Downloaded from www.aappublications.org/news by guest on September 24, 2021 Prologue unprepared for the possibility that usually without curative intent. Euthana- The young parents sit in a room with achildmightdie. sia is defined as administration of med- multiple medical teams: neurologists, ications to a patient with the intent of geneticists, and intensivists. They had Most in the United States today been worried for more than one year are preceded by a decision to limit the causing death. that their 7- year-old son did not seem to use of medical technologies. This fact is keep up with other children; many certainlytrueforpatientswhodecideto months ago, he began to show pro- gressive difficulty with his balance and stay at home rather than be admitted to HISTORICAL OVERVIEW seemed to be speaking even less than the hospital near the time of death, and Advances in medical technology over the before. They sought second opinions it is also true for both adult and child when the seizures began. He is now last century have led to medical care that patients in ICUs, where more patients having several seizures every hour, can be life-saving but in some cases can causing respiratory failure that requires now die after decisions to withhold or also merely prolong the dying process. him to be supported with mechanical withdraw technology than die of failed Several well-known legal cases relate to ventilation in the ICU. They have jour- cardiopulmonary resuscitation.1,2 Such neyed through 3 hospitals and met in- whether terminally ill patients have a right numerable physicians to arrive at this decisions are typically made when cure day. or survival with a good quality of life is to control the timing and manner of their There is an answer, but the news is not no longer possible, and the goals of care death, with judicial opinions in these cases good. A retinal examination and genetic therefore shift to focus on the comfort commenting on what therapies are ac- fi testing have con rmed the diagnosis: ceptable at the end of life. Although none of neuronal ceroid lipofuscinosis. At this of the patient, palliation of symptoms, stage of disease, there is no treatment and psychosocial support of the patient the examples or legal cases described that can reverse the progressive de- and family. Even in cases in which medical hereconcern pediatricpatients,manyof terioration. technology is limited or discontinued, the principles delineated still apply. The parents and the medical team make there are circumstances such as in the the difficult decision to discontinue the In 1988, an essay published in the ventilator and focus solely on keeping aforementioned case in which the line Journal of the American Medical As- the child comfortable. His parents have between controlling symptoms that sociation (titled “A piece of my mind. It’s seen that he gets agitated at times and occur after technology is discontinued over, Debbie”) sparked controversy are concerned that he will struggle or be and expediting death is unclear. in pain when the ventilator is removed. and public debate when an anonymous He has not been awake and aware of his Managing pain, dyspnea, or agitation author, apparently a resident physi- surroundings for weeks, although he associated with a cian, described meeting a patient at grimaces, stiffens, and coughs against the ventilator when any interventions usually requires the use of medications night: a young woman in severe pain cause discomfort. They ask if he can be such as opioids that may have un- from intractably progressive, dissemi- taken to the operating room and “put desired respiratory or cardiovascular nated cancer.3 The resident gave her under” so that it will all go quickly. adverse effects. Many clinicians are a dose of morphine that was “enough,” Providing compassionate, appropriate therefore concerned that administer- followed immediately by her death. care to any patient at the end of life ing the medications may hasten death. Some letter writers responded by calling requires navigating complex situations. To Is the family in the opening vignette for the author of the essay to be prose- do so skillfully requires an understanding asking for an appropriate intervention cuted for , while others lamented of ethical norms and controversies, to ensure that their child does not the poor treatment of pain at the end of pharmacologic and nonpharmacologic suffer? Or would a management plan life, lack of good options for patients, and tools for symptom management, and thatincludedageneralanestheticinthe importance of an open public debate.4,5 the risks and benefits of medical tech- operating room cross a line into un- The controversy highlights that the nology. Equally important, one must know acceptable territory? In this article, we medication used could be administered how to discuss all of these issues with explore the historical and legal back- either to treat suffering or to hasten a patient and family while continuing to ground, ethical debate, and , that there can be ambiguity re- support them through what is likely one of reasoning informing what differentiates garding which result a physician intends, the most stressful times of their lives. palliation from euthanasia. In the pro- and that opinions regarding what treat- Additional complexities arise when the cess,wehopetoprovidesomeinsighton ment is appropriate diverge widely based patient is a child because it is often true distinguishingbetweenwhatisandwhat on personal background and cultural thatachildisunabletostatehisorherown is not acceptable practice. Throughout, beliefs. wishes in such a situation, and the sur- palliation is defined as symptom-directed In 1997, 2 cases brought before the rogate decision-makers are frequently therapy aimed at improving quality of life, Supreme Court of the United States

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(Washington v. Glucksberg and Vacco v. participated in euthanasia or PAS.9 titrated appropriately (even if to high Quill) addressed whether adult patients However, even after legalization of PAS levels) based on the patient’s reports have a constitutional right to ask for in Oregon, only 7% of physicians reported or clinical signs of discomfort, pain, or assistance in dying from a physician having written prescriptions for lethal agitation?23,24 Was it clear from the doc- (defined as physician- drugs.10 Interestingly, physicians with umentation why more medication was [PAS] when a patient is provided with more training in end-of-life care were needed? the means to end his or her own life, less likely to report having assisted Some medications would clearly cross rather than euthanasia). The courts adult patients with dying.9 the line. Giving a dose of a neuromus- ruled that states were not obligated to Respondents in such surveys, however, cular blocking agent or potassium chlo- allow PAS but were also not prevented may not have understood what was ride at the time of ventilator withdrawal from legalizing it in their regulation of being asked. In a large, multicenter Eu- would do nothing to treat suffering; the medical practice, as some states have ropean study, many physicians who only plausible intent would be to cause 6 since done. No state has legalized reported having “shortened the dying death. Although some feel that neuro- such a practice in children. In her opin- process” had administered standard muscular blocking agents may make the ion on the case, Justice Sandra Day doses of medications to patients who patient appear more “peaceful,” the op- O’Connor stated that “a patient who is died no more quickly than patients for posite may be the case because these suffering from a terminal illness and whom that intent had not been stated.11,12 agents make it impossible for the clini- who is experiencing great pain has no Several studies in adult and neonatal cian to detect patient awareness or legal barriers to obtaining medication, patients that did not ask about intent dyspnea. Professional organizations from qualified physicians, to alleviate examined whether higher medication have advised against the use of such that suffering, even to the point of doses at the time of withdrawal of causing unconsciousness and hasten- medications in almost all end-of-life technological support are associated 25,26 ing death.”7 circumstances. with a more rapid death, and found Another way that palliation differs from Justice O’Connor’s statement perfectly little relationship.13–18 In fact, 1 study euthanasia is in the degree of control summarizes one of the basic tenets of found that higher sedative doses were over the timing and the outcome. Ap- ; if a patient is suffering, associated with longer survival.19 it is appropriate to treat that suffering, propriate palliation often requires let- and clinicians do not need to fear that ting the disease run its course while there are legal risks in doing so. That it HOW CAN ONE TELL THE doing one’s best to make sure the pa- may be acceptable to hasten death is DIFFERENCE BETWEEN TREATING tient does not have unmanaged pain or justified by the principle of double ef- SUFFERING AND HASTENING symptoms. Just how much time it fect, which states that an undesired DEATH? might take for a patient to die is often effect (death) may be accepted if the Palliation and euthanasia have some of uncertain. Indeed, especially for patients desired effect (relief of suffering) is the same goals. Both are ultimately who do not suffer from cancer, there is what is intended, as long as the un- spurred by the desire to relieve suf- often uncertainty regarding whether desired effect is not the means of fering. In palliation, the primary goal is the outcome of the illness episode will, achieving the desired effect and the to treat pain and symptoms, with an in fact, be death.27 Awareness of such good of the desired effect outweighs understanding that there is some uncertainty is important for all mem- the bad of the undesired effect. Thus, it chance that death may happen more bers of the health care team as well as would be acceptable if medications quickly. With euthanasia, ending life is the family. For many competent adult used to treat suffering led to the death themeansofendingsuffering.Intheory, patients who request aid in dying, the of a patient who is imminently dying the distinction should be clear. But in requests are often motivated by a de- but not of a patient who might other- clinical practice, it can be harder to sire to be in control of the circum- wise live for years more. differentiate.Whetheraphysicianintends stances of death.28,29 For some physicians, to treat suffering or hasten death when there may be a similar desire to control medications are administered can be the timing of what happens for their DO PHYSICIANS HASTEN DEATH? difficult to discern.11,20,21 Actions are easy dying patients, and such a feeling may More than one-half of oncologists have to assess; intentions are not.22 Were the be one of the complex motivations that received requests for assistance in dy- doses prescribed ones that made sense plays a role in choices about doses of ing,8 and almost 15% reported having in the given clinical situation? Were they medications.

PEDIATRICS Volume 133, Supplement 1, February 2014 S33 Downloaded from www.aappublications.org/news by guest on September 24, 2021 Interestingly, both family members and However, in the case of a patient who is of depressing consciousness only when the health care team may benefitby not actively dying and who tolerates there are no other alternatives. Clini- admitting we do not have full control supplemental nutrition, withholding it cians should choose the “least harmful over thetimingofwhensomeonedies.30 becomes more problematic because alternative” first and move on to riskier Families may feel more comfortable the sole intent of doing so may be to interventions or medications only if the discontinuing unwanted medical tech- hasten death. Even though the time first steps are not working.37 Similarly to nology if they know that doing so does frame is different from that of a lethal medications used for pain, if sedatives not guarantee an immediate death. injection, the end result is still de- are escalated only as much as needed to Occasionally, patients do unexpectedly termined by the action, and the only relieve distress, doing so would be un- well for longer than anticipated once relief of suffering provided is through likely to hasten death. their symptoms are controlled. This death itself. time may be valuable to the patient and the family. Palliative interventions often CONCLUSIONS exist in this area of uncertainty; treat PALLIATIVE SEDATION In the opening vignette, the parents the symptoms, and the patient will Palliative sedation refers to the pro- asked if their child could be pre- show us what the future holds. vision of sedatives at the end of life to emptively anesthetized before dis- Palliative interventions should also treat pain, agitation, or distress that is continuing ventilation. Although some stand up to scrutiny. When a clinician is resistanttotreatmentbyothermeans.34,35 wouldarguethatthiscourseoftreatment worried that a plan or a dose might Although it is also referred to in the lit- would guarantee that there would be no “cross the line,” it is always a good idea erature as “terminal sedation,” palliative undetected distress,38 there would also to voice those concerns and discuss is a better descriptor because it more be a high likelihood of giving more sed- them with colleagues. Medication and accurately reflects the intent of the ative and respiratory depressant medi- dose titration guidelines may help all medications. Although palliative sedation cation than required and a greater staff feel more comfortable that they is often discussed as raising more chal- chance of hastening death. The ICU team are acting within the usual standards lenging ethical dilemmas than other informed the parents that no medication of practice. Being able to clearly ex- palliative measures, it should not. The or anesthetic could be given that would plain to a family what we are or are not medications are the same as those most intentionally hasten death, but that able to do, while reassuring them that often used to treat agitation or dysp- analgesics and sedatives would be medications will be escalated to what- nea.36 Treatment should be titrated to continued to make sure their son was ever doses are necessary to make sure effect; benzodiazepines may be used in comfortable and would be escalated that their child is comfortable, helps to low doses as anxiolytics, higher doses if needed. The team asked the parents preserve trust both with individuals for distress not treatable by other to share their concerns if they detected and with the general public. means, and will be escalated to the point distress not noted by the staff but also

FLUIDS AND NUTRITION Withholding artificial nutrition and hy- TABLE 1 Rules of Thumb to Distinguish Appropriate Palliation From Euthanasia dration at the end of life is another area Palliation Euthanasia in which the lines can be blurred.31–33 The primary goal is to relieve suffering without The primary goal is to end life as a Withholding feedings in some patients considering life expectancy. These goals are way of ending suffering may be reasonable when the goal is to clear to the health care team and the family Medications to treat suffering are escalated by Medications are escalated regardless diminish suffering; examples would be using well-defined measures of treatment of physical symptoms a patient who is actively dying, one who effectiveness to reach goal of comfort. Medication would require a procedure such as escalation is stopped once suffering is adequately controlled tube placement to receive artificial The safest and least harmful medications are Medications are chosen based on efficacy nutrition, or when feeding itself is ac- chosen first before escalating to medications of achieving death quickly tually causing suffering. For a patient that are more likely to cause adverse effects of respiratory depression. Medications that hasten who is clearly in the last hours or days death without treating symptoms are avoided of life, it is unlikely that death would Use of medications and the process for decision-making Tendency to keep knowledge about the come any sooner for lack of nutrition. are open and documented in the patient medical record use of specific medications secret

S34 MORRISON and KANG Downloaded from www.aappublications.org/news by guest on September 24, 2021 SUPPLEMENT ARTICLE described signs of the normal dying pro- have respiratory depressant effects, ob- undertreated, leading to unnecessary cess that are sometimes misinterpreted viating the need to invoke the double suffering.39,40 An understanding that as discomfort. The parents understood effect principle. However, even in current treating pain and suffering is both and were able to hold their son for 2 practice, it is highly unlikely that medi- ethical and merciful will help all team hours after discontinuation of the venti- cations appropriately titrated to manage members do their best to care for lator until his death. symptoms lead to any meaningful patients and their families without In the future, analgesic and sedative shortening of dying. There is a far worrying about “crossing the line” medications may be available that do not greater risk that symptoms will be (Table 1).

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