Palliative care and suicidality: Complicated conversations at two ends of the spectrum

Lucas and colleagues1 highlight an important and challenging clinical scenario when healthcare providers identify adolescents and young adults (AYA) who find themselves confronting suicidal thoughts in the face of difficult-to-tolerate treatments for a life-limiting illness. As medical technology and therapeutics advance to prolong life, these thorny medically complex clinical situations intertwined with developmentally appropriate existential questions will continue to be more common. The authors correctly point out that, "Many patients at the end of life express the wish to stop pursuing curative therapy and allow a natural death; however, it is important to recognize when this becomes acute suicidality."1 When does "natural death" cross the line into personal agency expressed through suicidal thoughts? This clinical challenge has been described previously in the landmark 2003 publication by the Institute of Medicine (IOM), "When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families."2 At that time, illustrative stories of children and families included the story of—"Melissa Devane," a 13-year-old with osteogenic sarcoma who responded to ongoing treatment but had progressive recurrence four years later. "Melissa reacted by saying, 'I'd rather die than have more chemotherapy' and 'you're unreal—I'm going to die anyway.'" IOM authors noted, "As children mature, their intellectual and emotional understanding of serious illness and the prospect of death evolves. This story describes the complex relationships between a severely ill adolescent and her parents and physician and the different concerns she has as she moves from diagnosis and treatment to recurrences and further treatment, to death. The adolescent is in conflict with her parents and physician about undergoing burdensome experimental treatment but eventually persuades them to respect her wishes."2 She did not verbalize explicit suicide plans. Notably, at that time, there were no advance care planning guides for AYAs with terminal illnesses and few validated tools to assess suicidality in youth, particularly medically ill youth. Today, through the needed expansion of palliative care as a field with multidisciplinary research inclusive of AYA mental health, clinicians, patients, and their families have many more tools available with which to frame psychological and psychiatric assessments.3 Importantly, we in Western countries have come a long way from when healthcare providers refrained from asking medically ill patients regarding their thoughts about death and dying and especially about suicidal thoughts and behaviors. There is now research to show that AYA with cancer have suicidal thoughts4 and make suicide attempts during the course of treatment and into survivorship.5, 6 Tools that allow advance care planning for adolescents and young adults have been available since 2012.7, 8 But we can still do better given the low implementation rates of palliative care in youth.9 In a systematic review and meta-analysis including 52 studies, children, adolescents, and young adults with cancer were found to experience an increased risk of depression, anxiety, and psychotic disorders after cancer remission compared with siblings and noncancer-matched controls.10 Leaders in the field of pediatric palliative care and child and adolescent psychiatry call for more interventions and research to address the gap.11 What are normal emotional responses to one's own death for AYA and when does it cross a line into suicidal ideation that requires safety management? With the advent of social media and the 24-h continuous global information delivery cycle, researchers need to continue to study what is the "new normal" for the developmental understanding of death in healthy and medically ill AYA today. We understand that for each individual AYA, their understanding of their own personal mortality will vary given their experiences, family beliefs, and culture. This is even more true for an AYA's sense of meaning around their illness course. Adolescent development is a complex time with the need for increased autonomy and independent decision-making while trying to create one's own identity. Facing mortality during a period of discordant hormonal and brain development can result in strong emotions and impulsive behaviors that can fluctuate moment to moment. In the setting of overwhelming physical symptoms when ill, such as pain, fatigue, nausea, shortness of breath, and anxiety further impact the AYA's decision-making abilities. This paper underscores the critical role that palliative care plays in the assessment of debilitating symptoms in a life-limiting illness, particularly pain and pain interference. As Bates and Kearney12 note in their review on dying children's and adolescents' understanding of their own terminal illness and death, "Clinically, in the face of severe pain, patients may state they do not care if they die or even express active suicidal ideation. Alternatively, pain may accentuate fear of death and sadness." Universal screening for suicide risk embedded in routine distress screening of medical patients can alert the healthcare team and signal that an AYA's significant distress is leading to hopelessness or the feeling no one is listening.13 In this way, suicide risk screening is sometimes a proxy for significant emotional distress rather than imminent danger of self-harm—but it is difficult to know the difference. Brief suicide assessments found on clinical pathways for positives on suicide risk screening can help clinicians tease out the nuances between passive and active thoughts of suicide.14 Most suicide risk screens are not acutely positive as in Mateo's story where he had a concrete plan.1 Conversations about how one wants to live one's life, even at the end of life, as well as about when not to end one's life are never easy. The subtle nuances of teasing out what is normal developmental cognitive understanding and what are symptoms of severe distress requires expertise. While there are overlapping areas, the roles of palliative care physicians and psychiatrists are distinct.15 The communication skills needed to have these complicated and often courageous conversations make clear the importance of having a multidisciplinary palliative care team that includes psychiatrists and other mental health providers as part of the palliative care team who can help parse out the stages along the continuum of suicidal thinking from passive thoughts to active behaviors. This case study also underscores the logic behind universal suicide risk screening, which assists providers with starting the awkward conversation around one's thoughts of ending one's own life. It is critical to hear the voice of youth and to make sure that these thoughts are not unduly influenced by pain or other psychiatric syndromes such as delirium or other cognitive impairment, depression, or severe anxiety. Open communication about dying and about suicide, between the healthcare team, the patient, and the family, needs to be ongoing throughout the illness trajectory as the AYA's hopes, values, goals, and understanding evolve. This research was supported by the National Institute of Mental Health Intramural Research Program (annual report number: ZIAMH002922-16). The views expressed in this article are those of the authors and do not reflect the official policy of the National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, or U.S. Government. The authors declare no conflict of interest.