Greer A. Tiver

I don't want to be the one saying 'we should just let him die': intrapersonal tensions experienced by surrogate decision makers in the ICU.

BACKGROUNDAlthough numerous studies have addressed external factors associated with difficulty in surrogate decision making, intrapersonal sources of tension are an important element of decision making that have received little attention.OBJECTIVETo characterize key intrapersonal tensions experienced by surrogate decision makers in the intensive care unit (ICU), and explore associated coping strategies.DESIGNQualitative interview study.PARTICIPANTSThirty surrogates from five ICUs at two hospitals in Pittsburgh, Pennsylvania, who were actively involved in making life-sustaining treatment decisions for a critically ill loved one.APPROACHWe conducted in-depth, semi-structured interviews with surrogates, focused on intrapersonal tensions, role challenges, and coping strategies. We analyzed transcripts using constant comparative methods.KEY RESULTSSurrogates experience significant emotional conflict between the desire to act in accordance with their loved one’s values and 1) not wanting to feel responsible for a loved one’s death, 2) a desire to pursue any chance of recovery, and 3) the need to preserve family well-being. Associated coping strategies included 1) recalling previous discussions with a loved one, 2) sharing decisions with family members, 3) delaying or deferring decision making, 4) spiritual/religious practices, and 5) story-telling.CONCLUSIONSSurrogates’ struggle to reconcile personal and family emotional needs with their loved ones’ wishes, and utilize common coping strategies to combat intrapersonal tensions. These data suggest reasons surrogates may struggle to follow a strict substituted judgment standard. They also suggest ways clinicians may improve decision making, including attending to surrogates’ emotions, facilitating family decision making, and eliciting potential emotional conflicts and spiritual needs.

Oncologist factors that influence referrals to subspecialty palliative care clinics.

PURPOSE Recent research and professional guidelines support expanded use of outpatient subspecialty palliative care in oncology, but provider referral practices vary widely. We sought to explore oncologist factors that influence referrals to outpatient palliative care. METHODS Multisite, qualitative interview study at three academic cancer centers in the United States with well-established palliative care clinics. Seventy-four medical oncologists participated in semistructured interviews between February and October 2012. The interview guide asked about experiences and decision making regarding outpatient palliative care use. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine themes related to palliative care referral decisions. RESULTS We identified three main oncologist barriers to subspecialty palliative care referrals at sites with comprehensive palliative care clinics: persistent conceptions of palliative care as an alternative philosophy of care incompatible with cancer therapy, a predominant belief that providing palliative care is an integral part of the oncologists role, and a lack of knowledge about locally available services. Participants described their views of subspecialty palliative care as evolving in response to increasing availability of services and positive referral experiences, but emphasized that views of palliative care as valuable in addition to standard oncology care were not universally shared by oncologists. CONCLUSIONS Improving provision of palliative care in oncology will likely require efforts beyond increasing service availability. Raising awareness of ways in which subspecialty palliative care complements standard oncology care and developing ways for oncologists and palliative care physicians to collaborate and integrate their respective skills may help.

Perceptions of Palliative Care Among Hematologic Malignancy Specialists: A Mixed-Methods Study

PURPOSE Patients with hematologic malignancies are less likely to receive specialist palliative care services than patients with solid tumors. Reasons for this difference are poorly understood. METHODS This was a multisite, mixed-methods study to understand and contrast perceptions of palliative care among hematologic and solid tumor oncologists using surveys assessing referral practices and in-depth semistructured interviews exploring views of palliative care. We compared referral patterns using standard statistical methods. We analyzed qualitative interview data using constant comparative methods to explore reasons for observed differences. RESULTS Among 66 interviewees, 23 oncologists cared exclusively for patients with hematologic malignancies; 43 treated only patients with solid tumors. Seven (30%) of 23 hematologic oncologists reported never referring to palliative care; all solid tumor oncologists had previously referred. In qualitative analyses, most hematologic oncologists viewed palliative care as end-of-life care, whereas most solid tumor oncologists viewed palliative care as a subspecialty that could assist with complex patient cases. Solid tumor oncologists emphasized practical barriers to palliative care referral, such as appointment availability and reimbursement issues. Hematologic oncologists emphasized philosophic concerns about palliative care referrals, including different treatment goals, responsiveness to chemotherapy, and preference for controlling even palliative aspects of patient care. CONCLUSION Most hematologic oncologists view palliative care as end-of-life care, whereas solid tumor oncologists more often view palliative care as a subspecialty for comanaging patients with complex cases. Efforts to integrate palliative care into hematologic malignancy practices will require solutions that address unique barriers to palliative care referral experienced by hematologic malignancy specialists.

“It Hurts To Know…And It Helps”: Exploring How Surrogates in the ICU Cope with Prognostic Information

BACKGROUND Surrogates of critically ill patients in the intensive care unit (ICU) want honest prognostic information, but they also want to hear good news. There has been little examination of how surrogates navigate these dual needs or how clinicians should respond. OBJECTIVE The aim of this study was explore how surrogates in the ICU experience and cope with prognostic information and describe their recommendations for clinicians. METHODS We conducted a qualitative interview study with 30 surrogates facing life-sustaining treatment decisions in five ICUs in Pittsburgh, Pennsylvania. In-depth, semi-structured interviews with surrogates in the ICU focused on general experiences, emotional needs, informational needs, and recommendations for clinicians. We inductively analyzed transcripts for key themes using constant comparative methods. RESULTS Surrogates experience a tension between wanting to know what to expect and needing to remain hopeful. This tension underlies their experience receiving prognostic information and may lead to behaviors that allow continued hope in the face of bad news, including: 1) focusing on small details rather than the big picture, 2) relying on gut instincts or personal beliefs about the patient, 3) seeking more positive prognostic information from other sources, and, for a minority, 4) avoiding or disbelieving prognostic information. Surrogates emphasize the importance of frequent communication and call on physicians to gently help them prepare for the worst and hope for the best. CONCLUSIONS Surrogates in the ICU experience conflicting emotional and informational needs. They describe behaviors that give the appearance of avoiding bad news while simultaneously asking physicians to help them cope with prognostic information.

Discussion of treatment trials in intensive care

PURPOSE This study aimed to characterize whether and how the option of a treatment trial is discussed with surrogates in intensive care units. MATERIALS AND METHODS We audio-recorded 72 family conferences for 72 patients at high risk for death or severe functional impairment in 5 intensive care units in San Francisco, California. We analyzed transcripts to develop a coding framework for whether and how trials were discussed. RESULTS Trials were offered in 15% of conferences. We identified 2 types: (1) time-limited trials, defined as continuing all intensive, life-sustaining treatments, with a plan to reassess after a defined time period based on prespecified clinical milestones, and (2) symptom-limited trials, defined as using basic medical care aimed at survival (rather than purely comfort-focused treatment) once ventilatory support is withdrawn, with a plan to reassess based on patient symptoms. Clinicians frequently did not inform surrogates about key elements of the trial such as criteria by which the effectiveness of the trial would be evaluated and possible next steps based on trial results. CONCLUSIONS In this cohort of critically ill patients, trials were infrequently and incompletely discussed. Additional work is needed to improve communication about treatment trials and evaluate their impact on patient and family outcomes.

Care Management by Oncology Nurses To Address Palliative Care Needs: A Pilot Trial To Assess Feasibility, Acceptability, and Perceived Effectiveness of the CONNECT Intervention

BACKGROUND Specialty palliative care is not accessible for many patients with advanced cancer. There is a need to find alternative palliative care strategies in oncology clinics. OBJECTIVE The objective of the study was to assess the feasibility, acceptability, and perceived effectiveness of an oncology nurse-led care management approach to improve primary palliative care. METHODS The study design was a single-arm pilot trial of the Care Management by Oncology Nurses (CONNECT) intervention, in which registered oncology nurses receive specialized training and work closely with oncologists to (1) address symptom needs; (2) engage patients and caregivers in advance care planning; (3) provide emotional support; and (4) coordinate care. The subjects were 23 patients with advanced cancer, 19 caregivers, and 5 oncologists from a community oncology clinic in western Pennsylvania. Feasibility was assessed through enrollment rates, outcome assessment rates, and visit checklists. Patients, caregivers, and oncologists completed three-month assessments of acceptability and perceived effectiveness. RESULTS The consent-to-approach rate was 86% and enrolled-to-consent rate, 77%. CONNECT was implemented according to protocol for all participants. No participants withdrew after enrollment. Four patients died during the study; three-month outcome assessments were completed with all remaining participants (83%). Patients and caregivers reported high satisfaction with CONNECT and perceived the intervention as helpful in addressing symptoms (85%), coping (91%), and planning for the future (82%). Oncologists unanimously agreed that CONNECT improved the quality of care provided for patients with advanced cancer. CONCLUSION An oncology nurse-led care management intervention is feasible, acceptable, and was perceived to be effective for improving provision of primary palliative care. A randomized trial of CONNECT is warranted.

Development of a post–intensive care unit storytelling intervention for surrogates involved in decisions to limit life-sustaining treatment

OBJECTIVE Surrogates involved in decisions to limit life-sustaining treatment for a loved one in the intensive care unit (ICU) are at increased risk for adverse psychological outcomes that can last for months to years after the ICU experience. Post-ICU interventions to reduce surrogate distress have not yet been developed. We sought to (1) describe a conceptual framework underlying the beneficial mental health effects of storytelling, and (2) present formative work developing a storytelling intervention to reduce distress for recently bereaved surrogates. METHOD An interdisciplinary team conceived the idea for a storytelling intervention based on evidence from narrative theory that storytelling reduces distress from traumatic events through emotional disclosure, cognitive processing, and social connection. We developed an initial storytelling guide based on this theory and the clinical perspectives of team members. We then conducted a case series with recently bereaved surrogates to iteratively test and modify the guide. RESULTS The storytelling guide covered three key domains of the surrogates experience of the patients illness and death: antecedents, ICU experience, and aftermath. The facilitator focused on the parts of a story that appeared to generate strong emotions and used nonjudgmental statements to attend to these emotions. Between September 2012 and May 2013, we identified 28 eligible surrogates from a medical ICU and consented 20 for medical record review and recontact; 10 became eligible, of whom 6 consented and completed the storytelling intervention. The single-session storytelling intervention lasted from 40 to 92 minutes. All storytelling participants endorsed the intervention as acceptable, and five of six reported it as helpful. SIGNIFICANCE OF RESULTS Surrogate storytelling is an innovative and acceptable post-ICU intervention for recently bereaved surrogates and should be evaluated further.

Storytelling in the Early Bereavement Period to Reduce Emotional Distress Among Surrogates Involved in a Decision to Limit Life Support in the ICU: A Pilot Feasibility Trial.

Objectives: Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (storytelling) reduces emotional distress after other traumatic experiences. We sought to assess the feasibility, acceptability, and tolerability of storytelling among bereaved surrogates involved in a decision to limit life support in the ICU. Design: Pilot single-blind trial. Setting: Five ICUs across three hospitals within a single health system between June 2013 and November 2014. Subjects: Bereaved surrogates of ICU patients. Interventions: Storytelling and control conditions involved printed bereavement materials and follow-up assessments. Storytelling involved a single 1- to 2-hour home or telephone visit by a trained interventionist who elicited the surrogate’s story. Measurements and Main Results: The primary outcomes were feasibility (rates of enrollment, intervention receipt, 3- and 6-mo follow-up), acceptability (closed and open-ended end-of-study feedback at 6 mo), and tolerability (acute mental health services referral). Of 53 eligible surrogates, 32 (60%) consented to treatment allocation. Surrogates’ mean age was 55.5 (SD, 11.8), and they were making decisions for their parent (47%), spouse (28%), sibling (13%), child (3%), or other relation (8%). We allocated 14 to control and 18 to storytelling, 17 of 18 (94%) received storytelling, 14 of 14 (100%) and 13 of 14 (94%) control subjects and 16 of 18 (89%) and 17 of 18 (94%) storytelling subjects completed their 3- and 6-month telephone assessments. At 6 months, nine of 13 control participants (69%) and 16 of 17 storytelling subjects (94%) reported feeling “better” or “much better,” and none felt “much worse.” One control subject (8%) and one storytelling subject (6%) said that the study was burdensome, and one control subject (8%) wished they had not participated. No subjects required acute mental health services referral. Conclusion: A clinical trial of storytelling in this study population is feasible, acceptable, and tolerable.

A pilot trial of early specialty palliative care for patients with advanced pancreatic cancer: Challenges encountered and lessons learned.

110 Background: Palliative care trials face implementation barriers. We describe challenges encountered in a pilot trial of early specialty palliative care for patients with pancreatic cancer. METHODS We conducted a mixed-methods pilot randomized controlled trial of early specialty physician-led palliative care in advanced pancreatic cancer. Recently diagnosed patients with borderline, locally-advanced, or metastatic pancreatic cancer and their caregivers (total N=60) were recruited from clinic at a comprehensive cancer center and randomized (2:1) to receive monthly specialty palliative care visits for 3 months in addition to standard oncology care vs. standard oncology care alone. Feasibility assessments included enrollment and intervention completion rates. Acceptability and perceived effectiveness were assessed via drop-out rates and semi-structured participant interviews. RESULTS The enrollment target was reached after 50 weeks, with a randomized: approached rate of 27%. Mean patient age was 63 (SD 11) and 50% were male. Mean caregiver age was 62 (SD 12), 47% were male, and 80% were the spouse or partner of a patient. 70% of participants in the intervention group completed at least one specialty palliative care visit and 15% completed 3 palliative care visits within the 3-month time period. Two patients and 3 caregivers withdrew, and 4 patients died prior to 3 months. Enrollment barriers included patients not planning to continue receiving care from a participating oncologist and feeling too overwhelmed at the time of diagnosis to consider research participation. In semi-structured interviews, patients and caregivers noted that long travel times to the cancer center, difficulty scheduling palliative care visits at a convenient time, and lengthy study assessments posed burdens. Oncologists and palliative care physicians recommended more in-person communication between clinicians and tailoring palliative care visit content and schedules to match patient needs. CONCLUSIONS Future palliative care intervention trials must consider implementation challenges related to recruitment, retention, intervention fidelity, and participant burden. CLINICAL TRIAL INFORMATION NCT01885884.

Perceptions of palliative care among hematologic malignancy specialists: A mixed-methods study.

9 Background: Patients with hematologic malignancies have unmet palliative care needs but are less likely to receive specialist palliative care services than patients with solid tumors. This difference is poorly understood. METHODS Multisite, mixed-methods study to understand and contrast perceptions of palliative care among hematologic oncologists and solid tumor oncologists. Between February and October 2012, oncologists at 3 academic medical centers with well-established palliative care services completed surveys assessing referral practices and in-depth, semi-structured interviews about their views of palliative care. We compared referral patterns using standard statistical methods. We then analyzed qualitative interview data using constant comparative methods to explore reasons for observed differences. RESULTS Among 66 interviewees, 23 oncologists cared exclusively for patients with hematologic malignancies, and 43 treated only patients with solid tumors. Seven of 23 hematologic oncologists (30%) reported never referring a patient to palliative care; all solid tumor oncologists had previously referred (p<0.001). In qualitative analyses, most hematologic oncologists viewed palliative care as end-of-life care, while most solid tumor oncologists viewed palliative care as a subspecialty that could assist with complex cases and/or offload burden in a busy clinic. Solid tumor oncologists emphasized practical barriers to palliative care referral, such as appointment availability and reimbursement issues. Hematologic oncologists emphasized philosophical concerns about palliative care referrals, including different treatment goals, responsiveness to chemotherapy, and a preference to control palliative aspects of patient care. CONCLUSIONS Most hematologic oncologists view palliative care as end-of-life care, while solid tumor oncologists more often view palliative care as a subspecialty for co-managing complex patients. Efforts to integrate palliative care into hematologic malignancy practices will require solutions that address unique barriers to palliative care referral experienced by hematologic oncologists.