“My Future is Now”: A Qualitative Study of Persons Living With Advanced Cancer

Objectives: Advance care planning (ACP) enables individuals to deliberate about future preferences for care based upon their values and beliefs about what is important in life. For many patients with advanced cancer, however, these critical conversations do not occur. A growing body of literature has examined the end-of-life wishes of seriously ill patients. Few studies have explored what is important to persons as they live with advanced cancer. The aim of the current study was to address this gap and to understand how clinicians can support patients’ efforts to live in the present and plan for the future. Methods: Transcriptions of interviews conducted with 36 patients diagnosed with advanced cancer were analyzed using immersion–crystallization, a qualitative research technique. Results: Four overarching themes were identified: (I) living in the face of death, (II) who I am, (III) my experience of cancer, and (IV) impact of my illness on others. Twelve subthemes are also reported. Significance of Results: These findings have significant implications for clinicians as they partner with patients to plan for the future. Our data suggest that clinicians consider the following 4 prompts: (1) “What is important to you now, knowing that you will die sooner than you want or expected?” (2) “Tell me about yourself.” (3) “Tell me in your own words about your experience with cancer care and treatment.” (4) “What impact has your illness had on others?” In honoring patients’ lived experiences, we may establish the mutual understanding necessary to providing high-quality care that supports patients’ priorities for life

Enhancing the Prospects for Palliative Care at the End of Life: A Statewide Educational Demonstration Project to Improve Advance Care Planning

Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life. Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care. Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice. Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for “sustaining hope” (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting relationships with patients in home-based services, and fostering self-awareness and self-care among palliative care providers

Spiritual Experiences of Adults with Advanced Cancer in Outpatient Clinical Settings

Context Adults who have advanced cancer experience distress, and many use religion and spirituality to cope. Research on the spiritual experiences of advanced cancer patients will help guide the provision of high-quality spiritual care. Objectives To qualitatively describe advanced cancer patients’ spiritual experiences of illness. Methods We conducted semi-structured qualitative interviews at a single cancer center with 21 patients with stage IV solid malignancies who had a prognosis of less than 12 months, as estimated by each patient’s medical oncologist. Five investigators conducted a thematic analysis of the transcribed interviews. Results We found 31 patients who were eligible for enrollment, and 21 (67.7%) participated in interviews to thematic saturation. Using a thematic-analysis approach, five major themes emerged. Relationships with family and friends was the most important theme among all 21 patients irrespective of their religious or spiritual identity. Relationship with God and faith community was frequently identified by those who considered themselves spiritually religious. Cancer often led to reflection about the meaning of life and the nature of existential suffering Patients addressed the extent to which identity was changed or maintained through the cancer experience, and some expressed acceptance as a way of coping with illness. Conclusions Spiritual care for dying cancer patients should always include the exploration of relationships with family and friends, as well as God and faith community for some patients. Relationships with family, friends, and God can be a source of strength for many. Making meaning, addressing identity concerns, supporting acceptance as a resource for coping with illness, and acknowledging existential suffering will often arise for these patients

Advance Care Planning in A Preoperative Clinic: A Retrospective Chart Review

Patients seen in preoperative testing clinics are at an increased risk of surgical complications and most are incapacitated for during anesthesia. Advance directives (ADs) are important to guide care in the event of emergencies when patients are unable to speak for themselves. The goal of this study was to determine the frequency with which ADs are completed for patients seen in preoperative clinics prior to elective surgery and identify demographic and clinical characteristics associated with having ADs available in the electronic medical record (EMR)

Evaluation of interprofessional relational coordination and patients’ perception of care in outpatient oncology teams

This pilot study was designed to measure teamwork and the relationship of teamwork to patient perceptions of care among 63 members of 12 oncology teams at a Cancer Centre in the Midwest. Lack of teamwork in cancer care can result in serious clinical errors, fragmentation of care, and poor quality of care. Many oncology team members, highly skilled in clinical care, are not trained to work effectively as members of a care team. The research team administered the Relational Coordination survey to core oncology team members—medical oncologists, nurse coordinators, and clinical secretaries—to measure seven dimensions of team skills (four relating to communication [frequency, timeliness, accuracy, and problem solving] and three relating to relationship [shared goals, shared knowledge, and mutual respect]) averaged to create a Relational Coordination Index. The results indicated that among the team member roles, nurse coordinator relational coordination indices were the strongest and most positively correlated with patient perception of care. Statistically significant correlations were intra-nurse coordinator relational coordination indices and two patient perception of care factors (information and education and patient’s preferences). All other nurse coordinator intra-role as well as inter-role correlations were also positively correlated, although not statistically significant

Impact of Community Health Workers on Elderly Patients' Advance Care Planning and Health Care Utilization: Moving the Dial

BACKGROUND: Advance care planning (ACP) is recommended for all persons to ensure that the care they receive aligns with their values and preferences. OBJECTIVE: To evaluate an ACP intervention developed to better meet the needs and priorities of persons with chronic diseases, including mild cognitive impairment. RESEARCH DESIGN: A year-long, pre-post intervention using lay community health workers [care coordinator assistants (CCAs)] trained to conduct and document ACP conversations with patients during home health visits with pre-post evaluation. SUBJECTS: The 818 patients were 74.2 years old (mean); 78% women; 51% African American; 43% white. MEASURES: Documentation of ACP conversation in electronic health record fields and health care utilization outcomes. RESULTS: In this target population ACP documentation rose from 3.4% (pre-CCA training) to 47.9% (post) of patients who had at least 1 discussion about ACP in the electronic health record. In the 1-year preintervention period, there were no differences in admissions, emergency department (ED) visits, and outpatient visits between patients who did and did not have ACP discussion. After adjusting for prior hospitalization and ED use histories, ACP discussions were associated with a 34% less probability of hospitalization (hazard ratios, 0.66; 95% confidence interval, 0.45-0.97), and similar effects are apparent on ED use independent of age and prior ED use effects. CONCLUSIONS: Patients with chronic diseases including mild cognitive impairment can engage in ACP conversations with trusted home health care providers. Having ACP conversation is associated with significant reduction in seeking urgent health care and in hospitalizations

Clarifying Values and Preferences for Care Near the End of Life: The Role of a New Lay Workforce

Community health workers (CHWs) can engage elderly persons in advance care planning (ACP) conversations. We report how trained CHWs used Go Wish cards (GW R cards) to identify patients' highest priority preferences and evaluated whether engaging in ACP conversations was associated with subsequent health care utilization. A one-year long, pre-post longitudinal design was used to evaluate our educational intervention using mixed-methods. 392 patients (mean of 73.3 years, 82% women, 48% African American, 43% Caucasian) enrolled in the Aging Brain Care (ABC) program and participated in ACP discussions with CHWs. We expanded the role of the ABC's CHW, who work directly with individuals and caregivers during home visits to monitor bio-psycho-social needs, to include ACP conversations. The CHWs received ACP training, practice with tools such as GW R cards, and support from an electronic health record (EHR) clinical decision support tool. Quantitative measures of patients' ACP preferences and health care utilization were abstracted from the EHR. Qualitative data about patients' perceptions of CHWs in facilitating ACP discussions was obtained through semi-structured interviews. Eighty-six patients' data indicated that they had engaged in a preferences-for-care process using GW R cards. The top-three card choices by patients was attending to spirituality and religious concerns, preparing for end of life, and maintaining personal wholeness. CHWs were able to effectively engage in ACP conversations with patients and GW R cards were a positive way to stimulate discussion of issues previously undiscussed

Addressing Personal Barriers to Advance Care Planning: Qualitative Investigation of a Mindfulness-Based Intervention for Adults with Cancer and Their Family Caregivers

Objective Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients’ and families’ emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement. Method The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods. Result Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease. Significance of results The MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP

Response to depression treatment in the Aging Brain Care Medical Home model

OBJECTIVE: To evaluate the effect of the Aging Brain Care (ABC) Medical Home program's depression module on patients' depression severity measurement over time. DESIGN: Retrospective chart review. SETTING: Public hospital system. PARTICIPANTS: Patients enrolled in the ABC Medical Home program between October 1, 2012 and March 31, 2014. METHODS: The response of 773 enrolled patients who had multiple patient health questionnaire-9 (PHQ-9) scores recorded in the ABC Medical Home program's depression care protocol was evaluated. Repeatedly measured PHQ-9 change scores were the dependent variables in the mixed effects models, and demographic and comorbid medical conditions were tested as potential independent variables while including random effects for time and intercept. RESULTS: Among those patients with baseline PHQ-9 scores >10, there was a significant decrease in PHQ-9 scores over time (P50% decline from baseline) on the PHQ-9 at 6 months. CONCLUSION: These analyses demonstrate evidence for the sustained effectiveness of the ABC Medical Home program at inducing depression remission outcomes while employing clinical staff who required less formal training than earlier clinical trials

Abbreviated dignity therapy for adults with advanced-stage cancer and their family caregivers: Qualitative analysis of a pilot study

Objective Dignity therapy (DT) is designed to address psychological and existential challenges that terminally ill individuals face. DT guides patients in developing a written legacy project in which they record and share important memories and messages with those they will leave behind. DT has been demonstrated to ease existential concerns for adults with advanced-stage cancer; however, lack of institutional resources limits wide implementation of DT in clinical practice. This study explores qualitative outcomes of an abbreviated, less resource-intensive version of DT among participants with advanced-stage cancer and their legacy project recipients. Method Qualitative methods were used to analyze postintervention interviews with 11 participants and their legacy recipients as well as the created legacy projects. Direct content analysis was used to assess feedback from the interviews about benefits, barriers, and recommendations regarding abbreviated DT. The legacy projects were coded for expression of core values. Result Findings suggest that abbreviated DT effectively promotes (1) self-expression, (2) connection with loved ones, (3) sense of purpose, and (4) continuity of self. Participants observed that leading the development of their legacy projects promoted independent reflection, autonomy, and opportunities for family interaction when reviewing and discussing the projects. Consistent with traditional DT, participants expressed “family” as the most common core value in their legacy projects. Expression of “autonomy” was also a notable finding. Significance of results Abbreviated DT reduces resource barriers to conducting traditional DT while promoting similar benefits for participants and recipients, making it a promising adaptation warranting further research. The importance that patients place on family and autonomy should be honored as much as possible by those caring for adults with advanced-stage cancer