here:now - Conceptual model of the impact of an experiential arts program on persons with dementia and their care partners.

Community-based arts programs for persons with dementia and their care partners hold tremendous potential for increasing cognitive, social, and creative engagement and improving quality of life for these dyads. This is a qualitative, grounded theory analysis of here:now, a joint arts engagement program for persons with dementia and their care partners that involves gallery tours and art classes. Twenty-one care partners and 13 persons with dementia completed in-depth, semi-structured telephone interviews approximately two weeks following participation in the program. The program was well received by both persons with dementia and care partners as evidenced by high levels of engagement, mindfulness, social connection, and positive interactions. Factors identified as important to the experience included the museum space itself, the facilitation process, and socialization with other participants. Results form the basis for a conceptual model for assessing outcomes of arts programming and highlight the unique position of museums to support persons with dementia and their care partners in the community.

Reframing the goals of care conversation: "we're in a different place".

PURPOSE: Existing recommendations for communicating with patients with metastatic cancer about redefining goals of care when anticancer treatment is unlikely to provide benefit are based on limited evidence. This study was designed to elicit patient and family views on commonly used communication practices. STUDY DESIGN AND METHODS: Participants were 37 patients with metastatic gastrointestinal cancer and 20 bereaved family members who listened to audiorecordings of oncology fellows instructed to discuss a transition in goals of care with a standardized patient for whom evidence-based palliative chemotherapy was no longer effective. During semistructured qualitative interviews, participants commented on the audiorecordings to give feedback on what they liked or disliked about the oncologist's communication. These comments were transcribed and analyzed. RESULTS: Three preferred communication practices were identified from participants' comments. The first practice involves a necessary disruption of the patient's expectations about "trying another chemo" ("We're in a different place"). The second practice is offering actionable responses to the disruption ("Here's what we can do now"). The third practice is to find a new place that acknowledges death is closer yet still allows for "living forward" ("Use your inner wisdom"). CONCLUSION: This study of patient and family feedback indicates that patients and families perceive a conversation about goals of care to require disruption of an existing routine, followed by a process of searching and then reconfiguration, rather than a logical decision process. These findings suggest that assessing quality from patient perspectives must take into account a period of disruption and chaos.

What patients value when oncologists give news of cancer recurrence: commentary on specific moments in audio-recorded conversations.

PURPOSE: Recommendations for communicating bad or serious news are based on limited evidence. This study was designed to understand patient perspectives on what patients value when oncologists communicate news of cancer recurrence. STUDY DESIGN AND METHODS: Participants were 23 patients treated for a gastrointestinal cancer at a tertiary U.S. cancer center within the past 2 years, who had semistructured qualitative interviews in which they listened to audio recordings of an oncology fellow discussing news of cancer recurrence with a standardized patient. Participants paused the audio recording to comment on what they liked or disliked about the oncologist's communication. RESULT: Three themes were identified that refine existing approaches to discussing serious news. The first theme, recognition, described how the oncologist responded to the gravity of the news of cancer recurrence for the patient. Participants saw the need for recognition throughout the encounter and not just after the news was given. The second theme, guiding, describes what participants wanted after hearing the news, which was for the oncologist to draw on her biomedical expertise to frame the news and plan next steps. The third theme, responsiveness, referred to the oncologist's ability to sense the need for recognition or guidance and to move fluidly between them. CONCLUSION: This study suggests that oncologists giving news of cancer recurrence could think of the communication as going back and forth between recognition and guidance and could ask themselves: "Have I demonstrated that I recognize the patient's experience hearing the news?" and "Have I provided guidance to the next steps?"

Why don't patients enroll in hospice? Can we do anything about it?

BACKGROUND: United States hospice organizations aim to provide quality, patient-centered end-of-life care to patients in the last 6 months of life, yet some of these organizations observe that some hospice-eligible patients who are referred to hospice do not initially enroll. PRIMARY OBJECTIVE: To identify reasons that eligible patients do not enroll in hospice (phase 1). SECONDARY OBJECTIVE: To identify strategies used by hospice providers to address these reasons (phase 2). DESIGN: Semi-structured interviews analyzed using content analysis. PARTICIPANTS: In phase 1, we interviewed 30 patients and/or family members of patients who had a hospice admissions visit, but who did not enroll. In phase 2, we interviewed 19 hospice staff and national experts. APPROACH: In phase 1, we asked participants to describe the patient's illness, the hospice referral, and why they had not enrolled. We performed a content analysis to characterize their reasons for not enrolling in hospice. In phase 2, we enrolled hospice admissions staff and hospice experts. We asked them to describe how they would respond to each reason (from phase 1) during an admissions visit with a potential new hospice patient. We identified key phrases, and summarized their recommendations. RESULTS: Reasons that patients hadn't enrolled fell into three broad categories: patient/family perceptions (e.g., "not ready"), hospice specific issues (e.g., variable definitions of hospice-eligible patients), and systems issues (e.g., concerns about continuity of care). Hospice staff/experts had encountered each reason, and offered strategies at the individual and organizational level for responding. CONCLUSIONS: In hopes of increasing hospice enrollment among hospice-eligible patients, non-hospice and hospice clinicians may want to adopt some of the strategies used by hospice staff/experts for talking about hospice with patients/families and may want to familiarize themselves with the differences between hospice organizations in their area. Hospices may want to reconsider their admission policies and procedures in light of patients' and families' perceptions and concerns.

How oncology fellows discuss transitions in goals of care: a snapshot of approaches used prior to training.

INTRODUCTION: The moment when a physician raises the possibility of discontinuing palliative chemotherapy at the end of life is a critical moment in the illness, and a difficult conversation. Expert recommendations cite the importance of giving bad news in these situations but there is limited research addressing how physicians should discuss transitions in goals of care from disease-modifying therapy to end-of-life care. While existing research includes survey data and observational studies of oncologist outpatient visits with patient who have advanced cancer, there are no studies that characterize actual physician communication behaviors when the physician tried to initiate a transitions conversation with a patient who has advanced cancer. METHOD: In this study, we examined the communication approaches used by oncology fellows discussing transitions with a standardized patient using audiorecordings collected prior to an intensive communication skills workshop. In this preworkshop encounter, each oncology fellow had the task of discussing a transition in goals of care with a patient who was experiencing cancer progression despite treatment with existing evidence-based therapies. We used qualitative methodology to characterize the approaches used by oncology fellows in 20 of these pre-workshop conversations. RESULTS: We identified two themes in the approaches that fellows used: (1) the limitations of biomedical disease-modifying treatments and (2) the possibility of a new direction for medical care when disease-modifying treatments have been exhausted. CONCLUSION: We found that for each theme, fellows tended to emphasize a logical frame or an experiential frame. Understanding these frames could be useful in designing future communication skills training interventions.

Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others.

BACKGROUND: A majority of end-of-life medical decisions are made by surrogate decision-makers who have varying degrees of preparation and comfort with their role. Having a seriously ill family member is stressful for surrogates. Moreover, most clinicians have had little training in working effectively with surrogates. OBJECTIVES: To better understand the challenges of decision-making from the surrogate's perspective. DESIGN: Semistructured telephone interview study of the experience of surrogate decision-making. PARTICIPANTS: Fifty designated surrogates with previous decision-making experience. APPROACH: We asked surrogates to describe and reflect on their experience of making medical decisions for others. After coding transcripts, we conducted a content analysis to identify and categorize factors that made decision-making more or less difficult for surrogates. RESULTS: Surrogates identified four types of factors: (1) surrogate characteristics and life circumstances (such as coping strategies and competing responsibilities), (2) surrogates' social networks (such as intrafamily discord about the "right" decision), (3) surrogate-patient relationships and communication (such as difficulties with honoring known preferences), and (4) surrogate-clinician communication and relationship (such as interacting with a single physician whom the surrogate recognizes as the clinical spokesperson vs. many clinicians). CONCLUSIONS: These data provide insights into the challenges that surrogates encounter when making decisions for loved ones and indicate areas where clinicians could intervene to facilitate the process of surrogate decision-making. Clinicians may want to include surrogates in advance care planning prior to decision-making, identify and address surrogate stressors during decision-making, and designate one person to communicate information about the patient's condition, prognosis, and treatment options.

Incorporating principles and practical wisdom in research ethics education: a preliminary study.

PURPOSE: Researchers are faced with daily ethical decisions that are subtle and nuanced. However, research ethics training has primarily focused on formal guidelines, general ethical principles, and historically noteworthy cases of research abuse, which may not prepare researchers to respond to everyday dilemmas in research. This study characterized researchers' responses to ethical dilemmas with the goal of aligning research ethics education programs with the demands of practice. METHOD: As a preliminary study, the authors conducted 23 semistructured interviews with senior researchers and research administrators engaged in research with human subjects at the University of Washington and affiliated institutions in 2004. Transcripts were reviewed for research conflicts and strategies used to resolve conflicts identified by participants. RESULTS: Participants referenced two distinct methods of reasoning when faced with conflicts: formal guidelines and practical wisdom. Formal guidelines include established goals, boundaries, and absolutes. Practical wisdom, an Aristotelian concept involving intuitions developed through experience, facilitates responses to everyday dilemmas and new situations. Developing practical wisdom requires researchers to calibrate their own intuitions about right and wrong. Three practices were reported to contribute to this development: self-reflection, sincere skepticism, and open dialogue with colleagues. CONCLUSIONS: These reflections from the senior researchers suggest a need to expand the scope of ethics education programs to include a focus on the development of researchers' pragmatic decision making in addition to the formal rules that govern research. Further research should explore effective educational and institutional strategies that can foster researchers' development in ethical decision making and conduct.

Beyond substituted judgment: How surrogates navigate end-of-life decision-making.

OBJECTIVES: To characterize how surrogates plan to make medical decisions for others. DESIGN: Descriptive study using semistructured qualitative interviews. SETTING: Surrogates were interviewed by telephone from their homes. PARTICIPANTS: Fifty experienced surrogate decision-makers identified to make decisions for older, chronically ill veterans. MEASUREMENTS: Surrogates were asked to describe advance care planning conversations with loved ones and how they planned to make future medical decisions. Thematic content analysis was used to identify bases for decision-making. RESULTS: Surrogates described the motivators and the content of advance care planning conversations with loved ones. Surrogates described five bases for decision-making: (1) conversations (making decisions based on their knowledge of their loved ones' preferences), (2) relying on documents (referring to their loved ones' advance care directives), (3) shared experience (believing an "inner sense" would guide decisions because of shared lived experience with loved ones), (4) surrogates' own values and preferences about life, and (5) surrogates' network (enlisting the help of others). CONCLUSION: Although ethicists and clinicians expect surrogates to use substituted judgment or patients' best interests when making decisions, these data indicate that many surrogates rely on other factors such as their own best interests or mutual interests of themselves and the patient or intend to base substituted judgments on documents with which they have little familiarity.

How do surrogate decision makers describe hospice? Does it matter?

We interviewed 71 surrogate decision makers of older, chronically ill veterans to explore their knowledge of hospice and their role in helping loved ones access hospice services. We asked them to describe hospice and any previous hospice experiences. Of the group, 24 percent with hospice experience and 14 percent without hospice experience correctly described three key aspects of hospice: who hospice cares for, where the care is provided, and the goal of the care. Additionally, we found evidence that surrogates who correctly described the three key aspects of hospice were inclined to pursue hospice care for loved ones in the future, and surrogates who provided less complete descriptions of hospice might not access it. Since surrogates often help dying patients access care, incomplete knowledge of hospice may be an important barrier to hospice services. We advocate that clinicians discuss the three key aspects of hospice during routine advance care planning sessions with patients and their future surrogate decision makers.