• Advance Care Planning Communication for Young Adults with High-Risk Cancer

      Smith, Sharon L. (2016)
      Cancer is the leading disease related cause of death in young adults in the United States, with approximately 10,000 cancer-related deaths each year (Eheman et al., 2012). A young adult with high- risk cancer is faced with contradictory issues, being forced to look at the end of life in the midst of their own developmental challenges (Wiener et al., 2008; Wiener et al., 2012, Zebrack, 2011). The tasks for young adults age 14-21 include moving toward autonomous decision making and establishing one’s identity (Erikson, 1950; Arnett, 2004). For this reason, respecting the opportunity for young adults to make their own decisions is critical to effective communication. In young adults with cancer, social support from family, friends, health care providers, and other cancer patients is identified as a primary coping strategy and is associated with positive outcomes in this population (Kyngas et al., 2001; Trevino, Fasciano, Block, & Prigerson, 2013). Communication about future health care, including the end of life, is the essence of advance care planning (ACP). A diagnosis of high- risk cancer is a threat to one’s autonomy and self- control. ACP preserves patient autonomy and enables a sense of self- determination and self- control even at the end of life (Hebert, Moore & Rooney, 2011). The process of advance care planning is shown to improve quality of life (QOL) at the end of life by increasing communication, social support, autonomy and emotional well- being and decreasing stress, anxiety and depression (Waldrop & Meeker, 2012). However, approaching the topic of ACP is challenging and there is often discomfort on the part of the clinician as well as the patient and family. Issues such as fear of removing hope, lack of training and timing are described as barriers to discussions about end of life (Davies et al., 2008; Durall, Zurakowski & Wolfe, 2012). Conversations about future health are not easy and are often avoided by both healthcare providers and families. They are even less likely to occur if the patient is not an adult. The literature on ACP in young adults has increased in recent years and shows that this communication does not result in distress or negative effects on psychological well-being and is helpful for patients and care-givers (Lotz et al, 2013; Lyon et al., 2009; Lyon, et al., 2013; Lyon et al., 2014). The Institute of Medicine (IOM) recommends that ACP communication occur throughout the lifespan for all individuals; including young adults capable of participating and that it is the clinician’s responsibility to initiative these conversations (IOM, 2014). Similarly, the American Academy of Pediatrics recommends that advance care planning for young adults begins early in the disease process (American Academy of Pediatrics, 2000; Field & Behrman, 2002). The IOM endorses the establishment of evidence based quality standards for communication about ACP. There is emerging evidence describing the benefits of using structured ACP programs for young adults and for the completion of advance directive documents (Lyon et al., 2009, Hammes & Briggs, 2008; Towey, 1997). The development of a consistently applied approach that can be implemented at a time of stability has been recognized as ideal. However, the strategies available to guide communication with young adults about their needs and wishes for their health care, including at the end of life, remain limited (Pritchard, Cuvelier, Harlos, & Barr, 2011). The purpose of this evidence-based project was to use an advance directive document as a guide to initiate communication about ACP for young adults, with high- risk cancer in a simulated clinical setting. It was anticipated that this would facilitate nurse provider communication about end of life issues among the patient, family and the health care team.
    • Advance Care Planning With Adolescent and Young Adult Stem Cell Transplant Patients

      Ott, Lindsey V.; Hoffman, Ann G. (2019-05)
      Background: Advance care planning is not routinely performed with adolescent and young adult hematopoietic stem cell transplant patients, despite their critically ill status and the possibility that immediate medical decisions will need to be made on their behalf. The lack of advance care planning discussions or documentation can lead to incongruence between adolescent and young adult patients and caregivers about end-of-life preferences, poor communication between patients and providers, and unwanted medical interventions. Early initiation of advance care planning has been shown to be safe and feasible for adolescent and young adult patients facing life-threatening illnesses. Local Problem: In the Blood and Marrow Transplant Division at a large, urban freestanding pediatric hospital in the mid-Atlantic, it was determined that advance care planning was not routinely introduced to adolescent and young adult hematopoietic stem cell transplant patients during the transplant process. The purpose of this quality improvement project was to implement a standardized procedure for the initiation of advance care planning discussions and completion of advance care planning documentation for adolescent and young adult patients ages 15 years and older undergoing allogeneic hematopoietic stem cell transplant. Interventions: A standardized process for advance care planning meetings with adolescent and young adult patients was created, detailing procedures for identifying eligible patients, scheduling meetings for advance care planning during the pre-transplant process, and standardizing the documentation of advance care planning discussions. Five blood and marrow transplant team members participated in a one-hour training session conducted by a palliative care physician to increase knowledge and comfort level with advance care planning and the selected advance care planning document, Voicing My CHOiCESTM. Results: Four eligible adolescent and young adult patients were admitted for transplant between October and December 2018. All four patients completed Voicing My CHOiCESTM prior to hospital admission, and their completed documents were all easily located in the medical charts throughout their admissions. Documentation of the advance care planning discussion by the facilitating provider was present in the electronic health record for 100% of the patients. One hundred percent of the blood and marrow transplant team members rated the training session as “very helpful,” and rated Voicing My CHOiCESTM as helpful, easy to use, and appropriate for adolescent and young adult stem cell transplant patients. Conclusions: Early introduction of advance care planning is feasible for adolescent and young adult hematopoietic stem cell transplant patients. A standardized process for advance care planning helped to increase the number of adolescent and young adult hematopoietic stem cell transplant patients who participated in advance care planning discussions and completed Voicing My CHOiCESTM. This approach has the potential to improve communication and increase congruence between patients, caregivers, and providers.
    • End-of-life discussions as a component of advance care planning and their associations with care received near death

      Cheon, Jooyoung; Wiegand, Debra J. Lynn-McHale; 0000-0001-9622-0937 (2016)
      Background: Advance care planning (ACP) is an ongoing process of communication of end-of-life (EOL) preferences between patients, families, and health care professionals (HCPs). ACP includes having EOL discussions, durable power of attorney for health care (DPAHC), and living will (LW). Engagement in DPAHC and LW can lead to less aggressive treatments and more comfort care, but little is known about the effects of EOL discussions of patients' preferences on their outcomes. Purposes: The purposes of this study were: 1) to examine patient characteristics influencing engagement in ACP; 2) to determine the effect of engagement in EOL discussions alone and the combined effect of EOL discussions with DPAHC and/or LW on EOL care; and 3) to examine the effect of EOL discussions and DPAHC on congruency between patients' preferences for care and care they received. Method(s): This study was a secondary data analysis using the Health and Retirement Study Exit Interviews of 6,001 decedents aged 50 years or older. Five different types of engagement in ACP were selected for this study. Sequential logistic regression and multivariable logistic regression were used. Results: Decedent characteristics significantly associated with engagement in ACP were different by the types of engagement. Engagement in EOL discussions only was not a predictor of receiving all possible care to prolong life but was a predictor of receiving comfort care. Engagement in all three types of ACP was the strongest predictor of receiving both all possible care to prolong life and comfort care. Among decedents who had a LW, there was a synergistic effect of engagement in EOL discussions and DPAHC on receiving care consistent with decedents' preferences for EOL care. Engaging in more types of ACP was associated with lower odds of receiving all possible care, higher odds of receiving comfort care, and higher odds of receiving care consistent with decedents' preferences. Conclusions: Findings suggests that there was a synergistic effect of engagement in EOL discussions, DPAHC, and LW on receiving EOL care. HCPs should make more effort to communicate with patients and their families about their preferences at the EOL.