We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
BACKGROUND: Studies have shown gaps in prognostic understanding among patients with cancer. However, few studies have explored patients' perceptions of their treatment goals versus how they perceive their oncologist's goals, and the association of these views with their psychological distress.
METHODS: We conducted a cross-sectional study of 559 patients with incurable lung, gastrointestinal, breast, and brain cancers. The Prognosis and Treatment Perception Questionnaire was used to assess patients' reports of their treatment goal and their oncologist's treatment goal, and the Hospital Anxiety and Depression Scale was used to assess patients' psychological symptoms.
RESULTS: We found that 61.7% of patients reported that both their treatment goal and their oncologist's treatment goal were noncurative, whereas 19.3% reported that both their goal and their oncologist's goal were to cure their cancer, 13.9% reported that their goal was to cure their cancer whereas their oncologist's goal was noncurative, and 5% reported that their goal was noncurative whereas their oncologist's goal was curative. Patients who reported both their goal and their oncologist's goal as noncurative had higher levels of depression (B=0.99; P=.021) and anxiety symptoms (B=1.01; P=.015) compared with those who reported that both their goal and their oncologist's goal was curative. Patients with discordant perceptions of their goal and their oncologist's goal reported higher anxiety symptoms (B=1.47; P=.004) compared with those who reported that both their goal and their oncologist's goal were curative.
CONCLUSIONS: One-fifth of patients with incurable cancer reported that both their treatment goal and their oncologist's goal were to cure their cancer. Patients who acknowledged the noncurative intent of their treatment and those who perceived that their treatment goal was discordant from that of their oncologist reported greater psychological distress.
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement.
AIMS: To characterize the existing use and identify barriers to seeking palliative care consults in children admitted to the Pediatric Intensive Care Unit (PICU) with OHCA.
DESIGN: Mixed-methods quasi-experimental study.
PARTICIPANTS: Physicians (MD/DO), nurse practitioners, and registered nurses who provide care in the PICU.
RESULTS: Overall, nurses felt palliative care was consulted "not nearly enough" (43%), while the majority of physicians (53.9%) perceived palliative care services are requested either "just the right amount" (30.8%) or "too often" (23.1%). The top 3 desired palliative services were (1) patient and family psychosocial support, (2) assistance with determining goals of care, and (3) counseling and education. Barriers to consults were forgetting/not thinking about consulting, and family refusal of palliative care consult. No statistical differences among participant groups were found for likelihood to consult palliative care, unless the patient faced imminent death.
CONCLUSIONS: Pediatric Intensive Care Unit providers desire assistance from palliative care teams for help with identifying goals of care, providing psychosocial support, as well as education to the patients and their families. Unfortunately, there remains a large discrepancy between physicians and nurses when it comes to how often palliative care is, and should, be consulted.
BACKGROUND: Early palliative care consultation ("PCC") to discuss goals-of-care benefits seriously ill patients. Risk factor profiles associated with the timing of conversations in hospitals, where late conversations most likely occur, are needed.
OBJECTIVE: To identify risk factor patient profiles associated with PCC timing before death.
METHODS: Secondary analysis of an observational study was conducted at an urban, academic medical center. Patients aged 18 years and older admitted to the medical center, who had PCC, and died July 1, 2014 to October 31, 2016, were included. Patients admitted for childbirth or rehabilitationand patients whose date of death was unknown were excluded. Classification and Regression Tree modeling was employed using demographic and clinical variables.
RESULTS: Of 1141 patients, 54% had PCC "close to death" (0-14 days before death); 26% had PCC 15 to 60 days before death; 21% had PCC >60 days before death (median 13 days before death). Variables associated with receiving PCC close to death included being Hispanic or "Other" race/ethnicity intensive care patients with extreme illness severity (85%), with age <46 or >75 increasing this probability (98%). Intensive care patients with extreme illness severity were also likely to receive PCC close to death (64%) as were 50% of intensive care patients with less than extreme illness severity.
CONCLUSIONS: A majority of patients received PCC close to death. A complex set of variable interactions were associated with PCC timing. A systematic process for engaging patients with PCC earlier in the care continuum, and in intensive care regardless of illness severity, is needed.
BACKGROUND: Despite significant morbidity and mortality among patients with decompensated cirrhosis (DC), reported rates of advance directive (AD) completion and goals of care discussions (GCD) between patients and providers are very low. We aimed to improve these rates by implementing a hepatologist-led advance care planning (ACP) intervention.
MEASURES: Rates of AD and GCD completion, as well as self-reported barriers to ACP.
INTERVENTION: Provider-led ACP in patients with DC without a prior documented AD.
OUTCOMES: Sixty-two patients were seen over 115 clinic visits. After the intervention, AD completion rates increased from 8 to 31% and GCD completion rates rose from 0 to 51%. Women (p=0.048) and non-married adults (p=0.01) had greater changes in AD completion compared to men and married adults, respectively. Needing more time during visits was seen as the major barrier to ACP among providers.
CONCLUSIONS/LESSONS LEARNED: Addressing provider and system-specific barriers dramatically improved documentation rates of ACP.
Background: Palliative care aims to support people to live actively until death. A rehabilitative approach which includes goal setting could be an important way of achieving this. Goal setting is well established in best practice guidelines for palliative care. However little is known about how the process of goal setting actually happens in practice, especially from patients’ points of view. We aimed to investigate patients’ expectations, experience and perceptions of goal setting in one hospice.
Methods: We conducted 15 semi-structured interviews with a sample of patients who had been admitted to a Scottish hospice for symptom control. Interviews were digitally recorded, transcribed verbatim and analysed using Framework Analysis.
Results: Participants understood and valued goal setting but did not always share their goals with hospice staff. These were often participants’ own personal activity-based goals that they worked on in parallel, but not always in partnership with hospice professionals. Participants were able to adapt their goals as their situation changed.
Conclusions: Our findings revealed a gap between the goals that participants identified and worked towards compared with those that participants perceived the professionals focussed on. As a result, opportunities were missed for patients and professionals to work together to achieve goals.
BACKGROUND: Goal setting is recognised as an important way of supporting people to live as actively as possible until death. However, there is little agreement about how goal setting should be handled or delivered by health professionals in everyday practice.
AIM: To investigate health-care practitioners' understanding and practice of patient-centred goal setting in a hospice.
METHODS: A comparative case study of 10 healthcare practitioners in one hospice. Non-participant observations (n=28), semi-structured interviews (n=10) and case-note analysis (n=67) were undertaken. Data were analysed using framework analysis.
RESULTS: Participants viewed goal setting as part of routine practice. However, goal setting focused around what was seen as important from the health practitioner's perspective, rather than being patient-centred. Participants' goal-setting practice was implicit and opportunities to support patients to pursue goals were missed. Participants emphasised problem solving and alleviating symptoms rather than focusing on patient priorities and establishing patient-centred goals.
CONCLUSION: While goal setting is valued, it is practiced in an implicit, practitioner-centred and inconsistent manner. A more explicit, person-centred goal setting process may support practitioners more consistently in helping patients to identify their priorities and enhance their quality of life.
Background: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health.
Aim: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks.
Design:Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach.
Participants: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines.
Results: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress.
Conclusion: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death.
Patients at end of life often express a desire to travel, and many have requests that go unfulfilled. Studies show that a majority of patients have a desire to return to their place of birth to die when presented with the option, yet goals-of-care conversations do not routinely include travel desires for numerous reasons. Patients faced with a life-limiting illness are at greater risk of depression, withdrawal, denial, anger, and feelings of helplessness. When palliative care teams assist patients with end-of-life travel, they empower them with a greater sense of control over the dying process. Improving goals-of-care conversations regarding medical travel begins with well-developed communication skills and a knowledge of available options. This article primarily focuses on the recommendation of medical travel as a goals-of-care comfort measure for the palliative care patient.
Building on the strong work of previous research agendas (2009-2012, 2012-2015, 2015-2018), the Hospice and Palliative Nurses Association Research Advisory Council developed the 2019-2022 Research Agenda in consultation with Hospice and Palliative Nurses Association (HPNA) membership and assessment of major trends in palliative nursing. The HPNA Research Advisory Council identified 5 priority areas and asked subject experts in each area to summarize the state of the science, identify critical gaps, and provide recommendations for future research. This document expands the executive summary published on the HPNA website (www.advancingexpertcare.org/hpna/) and provides supporting evidence for the 2019-2022 recommendations. The 5 priority areas are as follows: (1) pediatric hospice and palliative nursing research; (2) family caregiving; (3) interprofessional education and collaborative practice; (4) big data science, precision health, and nursing informatics; and (5) implementation science.
Background: There is increasing need for nonspecialty physicians to deliver palliative care (PC) services to meet patient needs, but many physicians feel inadequately prepared.
Objective: We aimed to improve the PC skills of resident physicians through a learner-centered, just-in-time coaching intervention.
Design: Our quality improvement initiative consisted of two didactics and brief thrice-weekly coaching sessions that focused on real-time PC questions. Upper level internal medicine residents participated during an inpatient hospitalist rotation.
Measurements: Residents completed pre/postrotation surveys of their preparedness in discussing PC topics. Electronic medical record data of documentation of goals-of-care (GOC) discussions and Physician Orders for Life-Sustaining Treatment (POLST) completion in at-risk hospitalized patients (age >65 with two or more hospitalizations in the past six months, or age >90) were obtained and compared with before hospitalization. These data were also compared with data from patients on the same resident hospitalist service during the six-month period before the intervention began.
Results: During the 14-month intervention period, 42 residents cared for 232 at-risk patients. Among at-risk patients, 12.9% had a documented GOC discussion before hospitalization, which rose to 57.3% before discharge. Among at-risk patients preintervention, these rates were 5.2% and 25.0%, respectively. Residents reported their preparedness increased across many elements of GOC discussions and rated coaching sessions as useful and relevant to their training. Rates of POLST completion did not differ between preintervention and intervention groups.
Conclusions: Brief coaching sessions can integrate PC education into a busy clinical service, improve residents' primary PC skills, and improve GOC documentation.
Inadequate communication about serious illness care preferences affects patients, families, health care providers, and health care systems. Many patient and system barriers prevent comprehensive serious illness communication. The purpose of this evidence-based practice project was to provide a structure within a primary care clinic to facilitate conversations with seriously ill individuals about their care preferences that (a) was adaptable to clinic workflow, (b) improved providers’ perception of the care conversation experience, (c) improved documentation of care preferences, and (d) provided a comfortable and helpful experience. The Johns Hopkins Nursing Evidence-Based Practice model and Serious Illness Care Program were used to address provider and system barriers to conversations about care preferences. Program interventions included training providers and staff; identifying patients at risk for high symptom burden and mortality; integrating system interventions; and evaluating outcomes. Providers completed training, after which a 5-week pilot practice change was conducted. Provider perceptions of conversations after implementation were positive. During the pilot, 3 serious illness care conversations were initiated with additional patients prepared for future conversations using an information sheet and introduction to the conversation.
BACKGROUND: American College of Surgeons recommends palliative care and surgeons collaborate on the care of patients with poor prognoses. These collaborations are done to discuss symptom management and goals of care. However, contemporary practice patterns of palliative care consultation for surgical patients are poorly defined. We aim to describe the use of palliative care consultation for patients admitted to our institution's surgical services who died during their index hospital admission.
METHODS: The Duke Enterprise Data Unified Content Explorer 2014 to 2016 was queried for patients admitted to general surgery services who died during their admission. Secondary measures included length of stay, time spent in consultation, days from consultation to death, and execution of a care plan.
RESULTS: Of the 105 patients identified, 6 died on the day of admission, and 39 (37%) received palliative care consultation. Our data showed that patients who received consultation were generally older, white, and insured. Median number of days between palliative consult and death was 3 days (interquartile range: 1-8). Goals-of-care conversations were the indication for consultation in 62.5% of patients. The proposed plan by the consultants was congruent with the primary team in 66.7% of cases.
CONCLUSIONS: Palliative care consultations were underutilized in surgical patients who died while admitted to the general surgical service at our institution. When palliative care is consulted, the plan of the primary surgical team and the palliative team align. Identification of barriers to consultation and promotion of the benefits of palliative care among surgical teams is warranted.
Background: There is no consensus approach to describe the process or components of goals of care (GOC) conversations.
Objective: The objective was to review the utilization of the phrase “GOC” in PubMed-indexed literature to contextualize the use of the phrase. Secondary aim was to describe the use of this phrase within journals focused on palliative care.
Methods: A review of articles in the PubMed-indexed literature published during a single year utilizing the phrase “goals of care.”
Results: A total of 191 articles were reviewed after exclusions. Few articles included an operant definition for GOC (n = 27, 14%). It was often used to describe conversations focused on determining intent for treatment (n = 57, 30%), talks about death or dying (n = 52, 27%), or simply vague discussions (n = 39, 20%). The agenda was focused on the outcomes of the conversation (n = 169, 88%) compared with factors such as hopes, worries, values, and personhood (n = 22, 12%). The majority did not utilize the phrase “palliative care” (n = 77, 40%); those who did frequently used “palliative care” incorrectly (n = 72, 38%).
Conclusions: The definition of the phrase GOC is most often assumed with its context centered on the needs of the health care system and linked to a specific medical topic. It is most commonly used to describe determinations of the patient's therapy intent, second most commonly to describe end-of-life conversations. The use of the phrase GOC within the palliative literature does not differ notably from its use in the broader literature.
BACKGROUND: Some patients develop severe and persistent mental illness (SPMI) which is therapy-refractory. The needs of these patients sometimes remain unmet by therapeutic interventions and they are at high risk of receiving care that is inconsistent with their life goals. Scholarly discourse has recently begun to address the suitability of palliative care approaches targeting at enhancing quality of life for these patients, but remains to be developed.
METHOD: A cross-sectional survey asked 1311 German-speaking psychiatrists in Switzerland (the total number of German-speaking members of the Swiss Society for Psychiatry and Psychotherapy) about the care of SPMI patients in general, and about palliative care approaches in particular. 457 (34.9%) returned the completed survey. In addition, participants were asked to evaluate three case vignettes of patients with SPMI.
RESULTS: The reduction of suffering and maintaining daily life functioning of the patient were rated as considerably more important in the treatment of SPMI than impeding suicide and curing the underlying illness. There was broad agreement that SPMI can be terminal (93.7%), and that curative approaches may sometimes be futile (e.g. 72.4% for the anorexia nervosa case vignette). Furthermore, more than 75% of the participating psychiatrists were in favour of palliative care approaches for SPMI.
CONCLUSIONS: The results of the present study suggest that the participating psychiatrists in Switzerland regard certain forms of SPMI as posing high risk of death. Additionally, a majority of respondents consider palliative care approaches appropriate for this vulnerable group of patients. However, the generalizability of the results to all psychiatrists in Switzerland or other mental health professionals involved in the care of SPMI is limited. This limitation is important considering the reservations towards palliative care in the context of psychiatric illness, mainly because of the association with death and futility. Palliative care approaches, however, are applicable in conjunction with other therapies intended to prolong life. A next step could be to involve service users and develop a consensus of what palliative care might encompass in SPMI. A framework for identifying which patients might benefit from palliative care, should be explored for the future development of care for SPMI patients.
OBJECTIVE: With increasing evidence from controlled trials on benefits of early palliative care, there is a need for studies examining implementation in real-world settings. The INTEGRATE Project was a 3-year real-world project that promoted early identification and support of patients with cancer who may benefit from palliative care. This study assesses feasibility, stakeholder experiences, and early impact of the INTEGRATE Project
METHODS: The INTEGRATE Project was implemented in four cancer centres in Ontario, Canada, and consisted of interdisciplinary provider education and an integrated care model. Providers used the Surprise Question to identify patients for inclusion. A mixed methods evaluation of INTEGRATE was conducted using descriptive data, interviews with providers and managers, and provider surveys.
RESULTS: A total of 760 patients with cancer (lung, glioblastoma, head and neck, gastrointestinal) were included. Results suggest improvement in provider confidence to deliver palliative care and to initiate the Advanced Care Planning (ACP) conversation. The majority of patients (85%) had an ACP or goals of care (GOC) conversation initiated within a mean time to conversation of 5-46 days (SD 20-93) across centres. A primary care report was transmitted to family doctors 48-100% of the time within a mean time to transmission of 7-54 days (SD 9-27) across centres. Enablers and barriers influencing success of the model were also identified.
CONCLUSIONS: A standardized model for the early introduction of palliative care for patients with cancer can be integrated into the routine practice of oncology providers, with appropriate education, integration into existing clinical workflows, and administrative support.
BACKGROUND: To provide preference-sensitive care, we propose that clinicians might routinely inquire about their patients' bucket-lists and discuss the impact (if any) of their medical treatments on their life goals.
METHODS: This cross-sectional, mixed methods online study explores the concept of the bucket list and seeks to identify common bucket list themes. Data were collected in 2015-2016 through an online survey, which was completed by a total of 3056 participants across the United States. Forty participants who had a bucket list were identified randomly and used as the development cohort: their responses were analyzed qualitatively using grounded theory methods to identify the six key bucket list themes. The responses of the remaining 3016 participants were used for the validation study. The codes identified from the development cohort were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort. All the 3016 validation cohort transcripts were coded for presence or absence of each of the six bucket list themes.
RESULTS: Around 91.2% participants had a bucket list. Age and spirituality influence the patient's bucket-list. Participants who reported that faith/religion/spirituality was important to them were most likely (95%) to have a bucket list compared with those who reported it to be unimportant (68.2%), 2 = 37.67. Six primary themes identified were the desire to travel (78.5%), desire to accomplish a personal goal (78.3%), desire to achieve specific life milestones (51%), desire to spend quality time with friends and family (16.7%), desire to achieve financial stability (24.3%), and desire to do a daring activity (15%).
CONCLUSIONS: The bucket list is a simple framework that can be used to engage patients about their healthcare decision making. Knowing a patient's bucket list can aid clinicians in relating each treatment option to its potential impact (if any) on the patient's life and life goals to promote informed decision making.
The purposes of this study were to describe the advance care planning process for nursing home residents and identify common concerns regarding advance care planning. We conducted a content analysis of video-conferenced advance care planning meetings in the nursing home. Fourteen nursing home residents and 10 family members were included in the analysis. Themes based on the participants' statements during the meetings were used to generate the Advance Care Planning Process Framework. The Advance Care Planning Process Framework has 3 primary phases: (1) assess resident's status regarding end-of-life care, which includes establishing common language; identifying resident's unrealistic goals and wishes; and identifying inconsistencies between resident's expressed wishes and the preferences documented in medical record; (2) negotiate realistic plan of care, which includes addressing inconsistencies between resident's and family's goals; rephrasing goals and wishes in hypothetical scenarios; and clarifying goals; and (3) create action plan, which includes complete advance directives and revisit/revise in the future as needed. Most of the consultations resulted in action plans to facilitate concordance between resident wishes and medical records. Advance care planning with palliative care specialists provided a valuable opportunity for nursing home residents and families to discuss advance directives and provided valuable clarification of their goals of care.
CONTEXT: The number of patients discharged from acute care hospitals to skilled nursing facilities (SNFs) is rising. These patients have increasingly complex needs and many experience poor outcomes while under SNF care, including hospital readmissions. Patients' goals of care (GoC) are viewed as a factor contributing to unplanned hospital readmissions from SNFs. However, clinicians' perspectives of GoC for hospitalized patients discharged to SNFs are not well-described.
OBJECTIVES: To explore how clinicians view GoC for hospitalized patients discharged to SNFs.
METHODS: Qualitative study employing semi-structured interviews and thematic analysis.
RESULTS: Forty-one clinicians from one acute care hospital and two SNFs completed interviews ranging in length from 14-52 minutes (mean = 32). Of the sample, 22% were nurses, 20% physicians, 15% were from care management and 15% were from social services. Respondents viewed patients' GoC for continuing treatment at the SNF as important but acknowledged that they were infrequently discussed during hospitalization. Many respondents felt that patients and families had unrealistic GoC for SNF care. Factors that contributed to unrealistic GoC included patients' limited knowledge of: disease process, prognosis, and treatment options; and inconsistent or insufficient communication of GoC among hospital and SNF clinicians, the patient, and family members. Respondents associated a lack of GoC or unrealistic GoC with patients' dissatisfaction with SNF care, unplanned transitions to hospice, and hospital readmissions.
CONCLUSIONS: Respondents reported that GoC conversations infrequently occurred during hospitalization, contributing to unrealistic patient and family expectations for SNF care and poor patient outcomes. Interventions are needed that facilitate timely, accurate, and consistent GoC discussions across care continuums.
BACKGROUND: High-quality care for seriously ill patients aligns treatment with their goals and values. Failure to achieve "goal-concordant" care is a medical error that can harm patients and families. Because communication between clinicians and patients enables goal concordance and also affects the illness experience in its own right, healthcare systems should endeavor to measure communication and its outcomes as a quality assessment. Yet, little consensus exists on what should be measured and by which methods.
OBJECTIVES: To propose measurement priorities for serious illness communication and its anticipated outcomes, including goal-concordant care.
METHODS: We completed a narrative review of the literature to identify links between serious illness communication, goal-concordant care, and other outcomes. We used this review to identify gaps and opportunities for quality measurement in serious illness communication.
RESULTS: Our conceptual model describes the relationship between communication, goal-concordant care, and other relevant outcomes. Implementation-ready measures to assess the quality of serious illness communication and care include (1) the timing and setting of serious illness communication, (2) patient experience of communication and care, and (3) caregiver bereavement surveys that include assessment of perceived goal concordance of care. Future measurement priorities include direct assessment of communication quality, prospective patient or family assessment of care concordance with goals, and assessment of the bereaved caregiver experience.
CONCLUSION: Improving serious illness care necessitates ensuring that high-quality communication has occurred and measuring its impact. Measuring patient experience and receipt of goal-concordant care should be our highest priority. We have the tools to measure both.