PC-FACS

Traditional academic assumptions about advance care planning (ACP) include the following: (1) the purpose of ACP is preparing for incapacity; (2) ACP is based on the ethical principle of autonomy and the exercise of control; (3) the focus of ACP is completing written advance directive forms; and (4) ACP occurs within the context of the physician-patient relationship. These assumptions about ACP have never been empirically validated. To examine the traditional academic assumptions by exploring ACP from the perspective of patients actively participating in the planning process. Forty-eight patients (30 men and 18 women with a mean age of 48.3 years) who were undergoing hemodialysis were interviewed 6 months after receiving an advance directive form. Their experience of ACP was noted in interviews that were audiotaped, transcribed, and analyzed. The participants said that their purpose in ACP was to prepare for death and dying, and their underlying goals included the exercise of control and an attempt to relieve burdens placed on loved ones. Advance care planning was viewed as a social process, and completing a written advance directive form was often regarded as unnecessary. Participants often involved close loved ones, but physicians infrequently. The traditional academic assumptions are not fully supported from the perspective of patients involved in ACP. The patients we interviewed stated that (1) the purpose of ACP is not only preparing for incapacity but also preparing for death; (2) ACP is not based solely on autonomy and the exercise of control, but also on personal relationships and relieving burdens placed on others; (3) the focus of ACP is not only on completing written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-patient relationship but also within relationships with close loved ones.

Palliative Care Opportunities Among Adults With Congenital Heart Disease—A Systematic Review

Background: Lay health workers (LHWs) engaging African Americans in conversations about advance care planning (ACP) often have felt unprepared for the challenges of communicating with patients as they approach the end of life. We developed a church-based training curriculum, LIGHT (Listening, Identifying, Guiding, Helping, Translating), in response to this need. Objectives: To evaluate the LIGHT Curriculum by assessing its impact on knowledge, beliefs and attitudes, and self-efficacy of the learners; describing their assessment of the classroom component of the training; and describing their visit activities, and perceptions derived during client visits. Design: prospective, descriptive, pre- and post-training evaluation. Settings/Subjects: Thirty-seven LHWs (Comfort Care Supporters [CCSs]) from three African American Churches (United States). Measurements: knowledge, beliefs and attitudes, assessment of classroom training, self-efficacy, visit activities, and perceptions. Results: Pre-to-post knowledge scores (range 0-26) increased by a mean of 5.23, p < 0.0001. Agreement with favorable beliefs about palliative and hospice care (HC) did not change significantly post-training. Disagreement with unfavorable beliefs about hospice increased, most notably, the belief that hospice means a place where people go to die (43% to 87%, p = 0.003) and HC means giving up (77% to 93%, p = 0.03). Post-training, 94% of the CCSs felt prepared to function in their roles. The CCSs who visited clients demonstrated the ability to engage clients and families in conversations about issues important to ACP, end-of-life decision making and care, and the ability to identify relevant benefits and challenges of their roles. Conclusions: LHWs, trained using the LIGHT Curriculum, can acquire the knowledge and self-efficacy necessary to support African American clients with ACP, end-of-life decision making, and end-of-life care.

Public Awareness and Perceptions of Palliative and Comfort Care

The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with life-threatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement.

PC-FACS

Cancer survival rates for adolescents and young adults (AYA) have not improved over time relative to children or adults older than 39 years of age. Palliative care is specialized medical care focused on the control of symptoms and relief of suffering with the goal of improving quality of life for the patient and his or her family. To date, the integration of palliative care in AYA patients with cancer remains suboptimal. We explore the role of palliative care in the continuum of clinical care for AYA patients with cancer. Clinical practice guidelines highlight the need for integrating palliative care for all patients with cancer, including the AYA population. Despite this, a paucity of evidence exists regarding the use of palliative care with AYA patients with cancer. Graduate clinical education represents an opportunity to promote the full inclusion and early integration of palliative care in the care of AYA patients with cancer. Advance care planning is one area where some agreement exists on the unique needs of AYA patients and their families. In general, palliative care is seen as being synonymous with end-of-life care for patients with cancer. However, the emerging trend toward standardizing oncology care to meet the unique medical, psychosocial, and supportive care needs of AYA patients with cancer and their families represents an opportunity for health care professionals to collaborate early with palliative care specialists to control symptoms and relieve suffering in this vulnerable population.

Lynch syndrome (LS) is a hereditary cancer syndrome characterized by an increased risk of multiple cancers, predominantly endometrial and colorectal, at a younger age (typically < 50). In prior research, high death anxiety and a lack of provider-initiated communication about advance care planning (ACP) have been shown to decrease a patient’s likelihood of having advance directives. Providers often have gaps in knowledge and are uncomfortable with these conversations. We used a mixed methods approach (quantitative survey with a follow-up telephone interview) to assess knowledge, preferences, and attitudes regarding ACP in individuals with LS (n = 20). This study also assessed which ACP documents individuals already had in place and which persons (providers, family, or friends) an individual made aware of the documentation and/or preferences. These data were analyzed to determine patient preferences for who is responsible for initiating these conversations, identify motivating factors and barriers to these conversations, and determine whether the current conversations are adequate to meet the needs of this patient population. Participants recognized the importance of ACP and expressed interest in creating these documents. However, knowledge and confidence about these topics were lacking, with many participants attributing this to their young age and lack of experience. Although uncomfortable, many patients want to have ACP discussions with their providers, but frequently patients were only asked if these documents are completed with no further discussion. These findings can inform educational efforts to improve knowledge of ACP and interventional research to increase use of ACP by individuals with LS.

Purpose Cancer disrupts the social lives of adolescents and young adults (AYA). Social media may be a resource to engage with social networks, seek entertainment, and receive social support. However, some aspects of social media engagement may be emotionally burdensome and sensitive for AYA to navigate. The aim of this qualitative study was to contextualize the impact of cancer on AYA social media interaction. Methods Eight AYA ages 15–21 years and recently diagnosed with cancer participated in a semi-structured interview. AYA were asked about their social media interactions, engagement habits, and online cancer-related disclosure. Interviews averaged 36 min in length and were de-identified and transcribed verbatim and analyzed using thematic analysis. Results Four salient themes emerged from the data: (1) AYA engage in active and passive social media use depending on the platform, (2) AYA social media habits change due to treatment experiences, (3) AYA evaluate and protect their self-image, privacy, and time, and (4) AYA access social support online and interpret its meaning in different ways. AYA reported using social media, but many altered their frequency and type of interaction after diagnosis. Some were comfortable sharing about cancer and continued to interact actively online; others felt protective and vulnerable, transitioning to media consumption, or withdrawing from use. While social media provided space to receive direct and indirect social support, AYA interpreted the meaning of support in complex ways. Conclusions Social media may serve a variety of socio-emotional needs, but not all AYA will benefit from the same types of social media interaction. This study highlights the importance of talking to AYA with cancer about their social media interactions during treatment to better support their coping and adjustment.

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

Purpose:Adolescent and young adult (AYA) cancer patients frequently receive intensive measures at the end of life; many also express care goals that align with a palliative approach. We sought to understand the extent to which AYAs are referred to palliative care before death, the timing of referrals, and associations between referral timing and end-of-life care outcomes.Patients and Methods:Review of electronic health data and medical records for 1,918 AYAs aged 12–39 years who died after receiving care at one of 3 sites between 2003–2019. Patients who received palliative care but lacked documentation of referral timing were excluded.Results:Most included AYAs were White (61%); 12% were Asian, 8% Black, and 27% Hispanic. Nearly three-quarters (73%) were referred to palliative care before death. Thirty-six percent of palliative care referrals took place before the last 90 days of life; 30% were in the last month of life. Palliative care referrals and their timing were associated with care received at the end of life, with earlier referrals associated with fewer intensive measures near death, including chemotherapy in the last 14 days of life (P=0.001) as well as intensive care unit admissions, emergency room visits, and hospitalizations in the last month of life (P<0.001 for all.) Patients who were referred to palliative care were more likely to have symptoms assessed in the last 90 days of life, including pain, dyspnea, nausea, diarrhea, constipation, depression, and anxiety (P<.001 for all.)Conclusions:While many AYAs receive intensive measures at the end of life, most are also referred to palliative care. Earlier referrals have potential to reduce care intensity and enhance attention to symptoms and quality of life near death.

PurposeThe purpose of this paper is to determine the cost effectiveness of palliative care on patients in a home health and hospice setting. Secondary data set was utilized to test the hypotheses of this study. Home health care and hospice care services have the potential to avert hospital admissions in patients requiring palliative care, which significantly affects medicare spending. With the aging population, it has become evident that demand of palliative care will increase four-fold. It was determined that current spending on end-of-life care is radically emptying medicare funds and fiscally weakening numerous families who have patients under palliative care during life-threatening illnesses. The study found that a majority of people registering for palliative and hospice care settings are above the age group of 55 years old.Design/methodology/approachDifferent variables like length of stay, mode of payment and disease diagnosis were used to filter the available data set. Secondary data were utilized to test the hypothesis of this study. There are very few studies on hospice and palliative care services and no study focuses on the cost associated with this care. Since a very large number of the USA, population is turning 65 and over, it is very important to analyze the cost of care for palliative and hospice care. For the purpose of this analysis, data were utilized from the National Home and Hospice Care Survey (NHHCS), which has been conducted periodically by the Centers for Disease Control and Prevention’s National Center for Health Statistics. Descriptive statistics, χ2 tests and t-tests were used to test for statistical significance at the p<0.05 level.FindingsThe Statistical Package for Social Sciences (SPSS) was utilized for this result. H1 predicted that patients in the age group of 65 years and up have the highest utilization of home and hospice care. This study examined various demographic variables in hospice and home health care which may help to evaluate the cost of care and the modes of payments. This section of the result presents the descriptive analysis of dependent, independent and covariate variables that provide the overall national estimates on differences in use of home and hospice care in various age groups and sex.Research limitations/implicationsThe data set used was from the 2007 NHHCS survey, no data have been collected thereafter, and therefore, gap in data analysis may give inaccurate findings. To compensate for this gap in the data set, recent studies were reviewed which analyzed cost in palliative care in the USA. There has been a lack of evidence to prove the cost savings and improved quality of life in palliative/hospice care. There is a need for new research on the various cost factors affecting palliative care services as well as considering the quality of life. Although, it is evident that palliative care treatment is less expensive as compared to the regular care, since it eliminates the direct hospitalization cost, but there is inadequate research to prove that it improves the quality of life. A detailed research is required considering the additional cost incurred in palliative/hospice care services and a cost-benefit analysis of the same.Practical implicationsWhile various studies reporting information applicable to the expenses and effect of family caregiving toward the end-of-life were distinguished, none of the previous research discussed this issue as their central focus. Most studies addressed more extensive financial effect of palliative and end-of-life care, including expenses borne by the patients themselves, the medicinal services framework and safety net providers or beneficent/willful suppliers. This shows a significant hole in the current writing.Social implicationsWith the aging population, it has become evident that demand of palliative/hospice care will increase four-fold. The NHHCS have stopped keeping track of the palliative care requirements after 2007, which has a negative impact on the growing needs. Cost analysis can only be performed by analyzing existing data. This review has recognized a huge niche in the evidence base with respect to the cost cares of giving care and supporting a relative inside a palliative/hospice care setting.Originality/valueThe study exhibited that cost diminishments in aggressive medications can take care of the expenses of palliative/hospice care services. The issue of evaluating result in such a physically measurable way is complicated by the impalpable nature of large portions of the individual components of outcome. Although physical and mental well-being can be evaluated to a certain degree, it is significantly more difficult to gauge in a quantifiable way, the social and profound measurements of care that help fundamentally to general quality of care.

Introduction: The American Board of Surgery expects competence in interdisciplinary palliative care, and dealing with advancing chronic conditions and end-of-life scenarios are part of Accreditation Council for Graduate Medical Education general surgery milestones. Despite established standards, surgical trainees receive limited amounts of formal palliative care training, if any. Objective: The study purpose was to evaluate baseline knowledge and test effectiveness of an educational session for surgical residents focused on palliative care, hospice care, advance care planning (ACP), and related topics. Methods: The study was completed at Northeast Ohio Medical University with participation from general surgery residents, students, and faculty at Northside Regional Medical Center in Youngstown, Ohio. Participation involved a pretest, lecture, and posttest surrounding palliative and hospice care, ACP, and related topics to teach and assess baseline knowledge and usefulness of an educational session based on test comparison. Mean group scores for pre/post-tests were calculated. A paired one-tailed t-test was used to assess effective change in mean scores. Results: Twenty participants completed the session. The mean pretest score for the group was 60%. The mean posttest score for the group was 75%. Results show that, after the 30-min presentation, there was statistically significant improvement between means (P = 0.00002). Conclusions: Palliative care, hospice care, and ACP are not utilized to potential due to poor residency education as indicated by low mean pretest score. Statistically significant improvement between tests indicates that education focused on these topics can remedy the knowledge gap and presumably improve patient care involving these topics. The following core competencies are addressed in this article: Practice-based learning and improvement, Interpersonal and communication skills, Professionalism.

ObjectivesThe unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and...

205 Background: Rates of illicit substance use and misuse of opioid medications are high in the adolescent and young adult (AYA) general population. Despite this, screening for substance use and opioid misuse is not standard in the care of AYA oncology supportive/palliative care. To inform our clinical practice, we sought to determine the prevalence of illicit substance use and potential opioid misuse in AYA cancer patients relative to adult patients and to examine correlates of use and misuse. Methods: We conducted retrospective chart review of patients newly referred to an outpatient palliative care clinic between 2014 and 2016. Results: Consecutive patients (N = 963) underwent urine drug testing as part of their initial visit; 16% of patients were between 18 and 39 years of age. Rate of illicit drug use was 31% for AYAs and 19% for adults. AYAs were nearly 2 times more likely to have positive results for marijuana (OR = 1.79; 95% CI = 1.19 – 2.69) and nearly 3 times more likely to test positive for amphetamines (OR = 2.94; 95% CI = 1.15 – 7.49). AYAs were no more likely than adults to test positive for cocaine, barbiturates or heroin. In univariate analyses, only male sex and being single, and no clinical characteristics or symptom scores, were significantly associated with illicit substance use (ps &lt; .05). AYAs were no more likely than adults to test positive for the presence of opioids, not currently prescribed (OR = 1.07; 95% CI = 0.70 – 1.65). No symptoms scores or demographic and clinical characteristics were significantly associated with misuse. Conclusions: AYA patients demonstrated a high rate of illicit substance use and similar rate of potential opioid misuse relative to adult patients. Findings suggest AYAs may benefit from consistent screening, support and treatment for substance use and potential opioid misuse during anticancer and cancer-related therapies.