Half of adults with chronic obstructive pulmonary disease (COPD) in the US will be 75 years or older by 2030. Patients with COPD often have years of debilitating symptoms that accelerate their loss of independence and well-being. COPD is progressive and incurable; many patients are frail and socially isolated and struggle with long lists of medications. Their care is often chaotic and fragmented, with frequent emergency department visits and hospitalizations. Given the limited numbers of geriatricians and palliative care specialists, clinicians who routinely care for patients with COPD should proactively integrate geriatrics and palliative care principles into their daily practice.
Context: The coronavirus disease 2019 (COVID-19) pandemic is stressing health care systems throughout the world. Significant numbers of patients are being admitted to the hospital with severe illness, often in the setting of advanced age and underlying comorbidities. Therefore, palliative care is an important part of the response to this pandemic. The Seattle area and UW Medicine have been on the forefront of the pandemic in the U.S.
Methods: UW Medicine developed a strategy to implement a palliative care response for a multihospital health care system that incorporates conventional capacity, contingency capacity, and crisis capacity. The strategy was developed by our palliative care programs with input from the health care system leadership.
Results: In this publication, we share our multifaceted strategy to implement high-quality palliative care in the context of the COVID-19 pandemic that incorporates conventional, contingency, and crisis capacity and focuses on the areas of the hospital caring for the most patients: the emergency department, intensive care units, and acute care services. The strategy focuses on key content areas, including identifying and addressing goals of care, addressing moderate and severe symptoms, and supporting family members.
Conclusion: Strategy planning for delivery of high-quality palliative care in the context of the COVID-19 pandemic represents an important area of need for our health care systems. We share our experiences of developing such a strategy to help other institutions conduct and adapt such strategies more quickly.
The novel coronavirus disease 2019 (COVID-19) pandemic is challenging health care systems worldwide and raising important ethical issues, especially regarding the potential need for rationing health care in the context of scarce resources and crisis capacity. Even if capacity to provide care is sufficient, one priority should be addressing goals of care in the setting of acute life threatening illness, especially for patients with chronic, life-limiting disease.
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Background: Multiple chronic conditions (MCCs) are associated with increased intensity of end-of-life (EOL) care, but their effect is not well explored in patients with cancer.
Objective: we examined EOL health care intensity and advance care planning (ACP) documentation to better understand the association between MCCs and these outcomes.
Design: Retrospective cohort study.
Setting/Subjects: Patients aged 18+ years at UW Medicine who died during 2010-2017 with poor prognosis cancer, with or without chronic liver disease, chronic pulmonary disease, coronary artery disease, dementia, diabetes with end-stage organ damage, end-stage renal disease, heart failure, or peripheral vascular disease.
Measurements: ACP documentation 30+ days before death, in-hospital death, and inpatient or intensive care unit (ICU) admission in the last 30 days. We performed logistic regression for outcomes.
Results: Of 15,092 patients with cancer, 10,596 (70%) had 1+ MCCs (range 1-8). Patients with cancer and heart failure had highest odds of hospitalization (odds ratio [OR] 1.67, 95% confidence interval [CI] 1.46-1.91), ICU admission (OR 2.06, 95% CI 1.76-2.41), or in-hospital death (OR 1.62, 95% CI 1.43-1.84) versus patients with cancer and other conditions. Patients with ACP 30+ days before death had lower odds of in-hospital death (OR 0.65, 95% CI 0.60-0.71), hospitalization (OR 0.67, 95% CI 0.61-0.74), or ICU admission (OR 0.71, 95% CI 0.64-0.80).
Conclusions: Patients with ACP 30+ days before death had lower odds of high-intensity EOL care. Further research needs to explore how to best use ACP to ensure patients receive care aligned with patient and family goals for care.
Importance: Patients with chronic illness frequently use Physician Orders for Life-Sustaining Treatment (POLST) to document treatment limitations.
Objectives: To evaluate the association between POLST order for medical interventions and intensive care unit (ICU) admission for patients hospitalized near the end of life.
Design, Setting, and Participants: Retrospective cohort study of patients with POLSTs and with chronic illness who died between January 1, 2010, and December 31, 2017, and were hospitalized 6 months or less before death in a 2-hospital academic health care system.
Exposures: POLST order for medical interventions ("comfort measures only" vs "limited additional interventions" vs "full treatment"), age, race/ethnicity, education, days from POLST completion to admission, histories of cancer or dementia, and admission for traumatic injury.
Main Outcomes and Measures: The primary outcome was the association between POLST order and ICU admission during the last hospitalization of life; the secondary outcome was receipt of a composite of 4 life-sustaining treatments: mechanical ventilation, vasopressors, dialysis, and cardiopulmonary resuscitation. For evaluating factors associated with POLST-discordant care, the outcome was ICU admission contrary to POLST order for medical interventions during the last hospitalization of life.
Results: Among 1818 decedents (mean age, 70.8 [SD, 14.7] years; 41% women), 401 (22%) had POLST orders for comfort measures only, 761 (42%) had orders for limited additional interventions, and 656 (36%) had orders for full treatment. ICU admissions occurred in 31% (95% CI, 26%-35%) of patients with comfort-only orders, 46% (95% CI, 42%-49%) with limited-interventions orders, and 62% (95% CI, 58%-66%) with full-treatment orders. One or more life-sustaining treatments were delivered to 14% (95% CI, 11%-17%) of patients with comfort-only orders and to 20% (95% CI, 17%-23%) of patients with limited-interventions orders. Compared with patients with full-treatment POLSTs, those with comfort-only and limited-interventions orders were significantly less likely to receive ICU admission (comfort only: 123/401 [31%] vs 406/656 [62%], aRR, 0.53 [95% CI, 0.45-0.62]; limited interventions: 349/761 [46%] vs 406/656 [62%], aRR, 0.79 [95% CI, 0.71-0.87]). Across patients with comfort-only and limited-interventions POLSTs, 38% (95% CI, 35%-40%) received POLST-discordant care. Patients with cancer were significantly less likely to receive POLST-discordant care than those without cancer (comfort only: 41/181 [23%] vs 80/220 [36%], aRR, 0.60 [95% CI, 0.43-0.85]; limited interventions: 100/321 [31%] vs 215/440 [49%], aRR, 0.63 [95% CI, 0.51-0.78]). Patients with dementia and comfort-only orders were significantly less likely to receive POLST-discordant care than those without dementia (23/111 [21%] vs 98/290 [34%], aRR, 0.44 [95% CI, 0.29-0.67]). Patients admitted for traumatic injury were significantly more likely to receive POLST-discordant care (comfort only: 29/64 [45%] vs 92/337 [27%], aRR, 1.52 [95% CI, 1.08-2.14]; limited interventions: 51/91 [56%] vs 264/670 [39%], aRR, 1.36 [95% CI, 1.09-1.68]). In patients with limited-interventions orders, older age was significantly associated with less POLST-discordant care (aRR, 0.93 per 10 years [95% CI, 0.88-1.00]).
Conclusions and Relevance: Among patients with POLSTs and with chronic life-limiting illness who were hospitalized within 6 months of death, treatment-limiting POLSTs were significantly associated with lower rates of ICU admission compared with full-treatment POLSTs. However, 38% of patients with treatment-limiting POLSTs received intensive care that was potentially discordant with their POLST.
Background: The experience of financial stress during and after critical illness for patients and their family is poorly understood.
Objectives: Our objectives were to (1) explore common financial concerns, their contribution to emotional stress, and potential opportunities for interventions to reduce financial stress in patients with critical illness and their family members; and (2) confirm patient and family members' willingness to provide information on this topic.
Design: Cross-sectional survey study.
Setting/Subjects : Patients (18/24, response rate 75%) and their family members (32/58, response rate 55%) from two prior randomized trials at an urban, level 1 Trauma center.
Results: Ten (56%) patients and 19 (70%) family members reported financial worries during an intensive care unit (ICU) stay; 70% of both groups reported financial worries post-ICU discharge. Thirty percent (3/10) of patients and 43% (10/23) of family members who were not asked about financial concerns by hospital staff wished that they had been asked. Both patients and family believed that it would have been helpful to have information about insurance coverage, interpreting hospital bills, and estimated out-of-pocket costs. Among patients, 47% favored receiving these services after the ICU stay (7/15), while 20% (3/15) preferred these services in the ICU; 73% of family members preferred receiving them during the ICU stay (22/30), while 27% (8/30) preferred these services after the ICU stay.
Conclusion: Our findings suggest that the experience of financial stress and the worry it causes during and after critical illness are common and potentially modifiable with simple targeted interventions.
BACKGROUND AND OBJECTIVES: High-flow nasal cannula (HFNC) oxygen may provide tailored benefits in patients with preset treatment limitations. The objective of this study was to assess the effectiveness of HFNC oxygen in patients with do-not-intubate (DNI) and/or do-not-resuscitate (DNR) orders.
METHODS: We conducted a systematic review of interventional and observational studies. A search was performed using MEDLINE, EMBASE, CINAHL, Scopus, and Web of Science, from inception to October 15, 2018.
RESULTS: We included six studies evaluating 293 patients. All studies had a high risk of bias. The hospital mortality rates of patients with DNI and/or DNR orders receiving HFNC oxygen were variable and ranged from 40% to 87%. In two before and after studies, the initiation of HFNC oxygen was associated with improved oxygenation and reduced respiratory rates. One comparative study found no difference in dyspnea reduction or morphine doses between patients using HFNC oxygen versus conventional oxygen. No studies evaluated quality of life in survivors or quality of death in nonsurvivors. HFNC was generally well tolerated with few adverse events identified.
CONCLUSIONS: While HFNC oxygen remains a viable treatment option for hospitalized patients who have acute respiratory failure and a DNI and/or DNR order, there is a paucity of high-quality, comparative, effectiveness data to guide the usage of HFNC oxygen compared with other treatments, such as noninvasive ventilation, conventional oxygen, and palliative opioids.
Context: Programs identifying patients needing palliative care and promoting advance care planning (ACP) are rare in Asia.
Objectives: This interventional cohort study aimed to identify hospitalized patients with palliative care needs using a validated Palliative Care Screening Tool (PCST), examine the ability of the PCST to predict mortality, and explore effects of a pragmatic ACP program targeted by PCST on the utilisation of life-sustaining treatment during the last three months of life.
Methods: In this prospective study, we used PCST to evaluate patients’ palliative care needs between 2015 and 2016 and followed patients for 3 months. ACP with advance directives (AD) were systematically offered to all patients with PCST score =4.
Results: Of 47,153 hospitalized patients, 10.4% had PCST score =4. During follow-up, 2,121 individuals died within three months of palliative care screening: 1,225 (25.0%) with PCST score =4 and 896 (2.1%) with PCST score <4. After controlling for co-variates, PCST score =4 was significantly associated with a higher mortality within 3 months of screening (adjusted odds ratio [AOR], 6.86; 95% confident interval [CI], 6.16-7.63). Moreover, ACP consultation (AOR=0.78, 95%CI: (0.66-0.92) and AD completion (AOR=0.49, 95%CI: 0.36-0.65) were associated with a lower likelihood of receiving life-sustaining treatments during the last 3 months of life.
Conclusions: We demonstrated the feasibility of implementing a comprehensive palliative care program to identify patients with palliative care needs and promote ACP and AD in East Asia. ACP consultation and AD completion were associated with reduced utilization of life-sustaining treatments during the last 3 months of life.
Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients.
Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.
Introduction: Advance care planning (ACP) is a process in which patients, families, and providers discuss and plan for desired treatment goals. American Indian and Alaska Native people (AI/AN) have higher prevalence of many serious, life-limiting illnesses compared with the general population; yet AI/ANs use ACP considerably less than the overall population.
Method: We conducted a qualitative study to culturally adapt an existing ACP intervention for AI/ANs in two primary care settings.
Results: We found that it is important to incorporate patients' cultural values and priorities into ACP, determine who the patient wants involved in ACP conversations, and consider the culturally and locally relevant barriers and facilitators when developing an ACP intervention with AI/AN communities. Discussion: At the core, ACP interventions should be clear and understandable across populations and tailored to facilitate culturally appropriate and meaningful patient-provider communication. Our results and methodology of culturally adapting an intervention may be applicable to other underrepresented populations.
BACKGROUND: Insight into health conditions associated with death can inform healthcare policy. We aimed to cluster 27,525,663 deceased people based on the health conditions associated with death to study the associations between the health condition clusters, demographics, the recorded underlying cause and place of death.
METHODS: Data from all deaths in the United States registered between 2006 and 2016 from the National Vital Statistics System of the National Center for Health Statistics were analyzed. A self-organizing map (SOM) was used to create an ordered representation of the mortality data.
RESULTS: 16 clusters based on the health conditions associated with death were found showing significant differences in socio-demographics, place, and cause of death. Most people died at old age (73.1 (18.0) years) and had multiple health conditions. Chronic ischemic heart disease was the main cause of death. Most people died in the hospital or at home.
CONCLUSIONS: The prevalence of multiple health conditions at death requires a shift from disease-oriented towards person-centred palliative care at the end of life, including timely advance care planning. Understanding differences in population-based patterns and clusters of end-of-life experiences is an important step toward developing a strategy for implementing population-based palliative care.
OBJECTIVES: To develop an enhanced understanding of factors that influence providers' views about end-of-life care, we examined the contributions of provider, hospital, and country to variability in agreement with consensus statements about end-of-life care.
DESIGN AND SETTING: Data were drawn from a survey of providers' views on principles of end-of-life care obtained during the consensus process for the Worldwide End-of-Life Practice for Patients in ICUs study.
SUBJECTS: Participants in Worldwide End-of-Life Practice for Patients in ICUs included physicians, nurses, and other providers. Our sample included 1,068 providers from 178 hospitals and 31 countries.
MEASUREMENTS AND MAIN RESULTS: We examined views on cardiopulmonary resuscitation and withholding/withdrawing life-sustaining treatments, using a three-level linear mixed model of responses from providers within hospitals within countries. Of 1,068 providers from 178 hospitals and 31 countries, 1% strongly disagreed, 7% disagreed, 11% were neutral, 44% agreed, and 36% strongly agreed with declining to offer cardiopulmonary resuscitation when not indicated. Of the total variability in those responses, 98%, 0%, and 2% were explained by differences among providers, hospitals, and countries, respectively. After accounting for provider characteristics and hospital size, the variance partition was similar. Results were similar for withholding/withdrawing life-sustaining treatments.
CONCLUSIONS: Variability in agreement with consensus statements about end-of-life care is related primarily to differences among providers. Acknowledging the primary source of variability may facilitate efforts to achieve consensus and improve decision-making for critically ill patients and their family members at the end of life.
Context: Prioritizing amongst potentially conflicting end-of-life values may help patients discriminate amongst treatments and allow clinicians to align treatments with values.
Objectives: To investigate end-of-life values that patients prioritize when facing explicit trade-offs and identify predictors of patients whose values and treatment preferences seem inconsistent.
Methods: Analysis of surveys from a multi-center cluster-randomized trial of patients with serious illness. Respondents prioritized end-of-life values and identified cardiopulmonary resuscitation (CPR) preferences in two health states.
Results: Of 535 patients, 60% prioritized relief of discomfort over extending life, 17% prioritized extending life over relief of discomfort, and 23% were unsure. Patients prioritizing extending life were most likely to prefer CPR, with 93% preferring CPR in current health and 67% preferring CPR if dependent on others, compared to 69% and 21% respectively for patients prioritizing relief of discomfort, and 78% and 33% respectively for patients unsure of their prioritized value (p<0.001 for all comparisons). Among patients prioritizing relief of discomfort, preference for CPR in current health was less likely among older patients (OR 0.958 per year; 95%CI 0.935,0.981) and more likely with better self-perceived health (OR 1.402 per level of health; 95%CI 1.090,1.804).
Conclusion: Clinicians face challenges as they clarify patient values and align treatments with values. Patients' values predicted CPR preferences, but a substantial proportion of patients expressed CPR preferences that appeared potentially inconsistent with their primary value. Clinicians should question assumptions about relationships between values and CPR preferences. Further research is needed to identify ways to use values to guide treatment decisions.
Objectives: Optimistic expectations about prognosis by surrogate decision-makers in ICUs are common, but there are few data about the causes and clinical consequences. Our objective was to determine the causes of optimistic expectations about prognosis among surrogates and whether it is associated with more use of life support at the end of life.
Design: Prospective, multicenter cohort study from 2009 to 2012.
Setting: Twelve ICUs from multiple regions of the United States.
Subjects: The surrogates and physicians of 275 incapacitated ICU patients at high risk of death.
Measurements and Main Results: Surrogates and physicians completed a validated instrument assessing their prognostic expectations for hospital survival. We determined the proportion of surrogates with optimistic expectations, defined as a prognostic estimate that was at least 20% more optimistic than the physician’s, then determined how frequently this arose from surrogates miscomprehending the physicians’ prognosis versus holding more hopeful beliefs compared with the physician. We used multivariable regression to examine whether optimistic expectations were associated with length of stay, stratified by survival status, and time to withdrawal of life support among nonsurvivors. Overall, 45% of surrogates (95% CI, 38–51%) held optimistic expectations about prognosis, which arose from a combination of misunderstanding the physician’s prognostic expectations and from holding more hopeful beliefs compared with the physician. Optimistic expectations by surrogates were associated with significantly longer duration of ICU treatment among nonsurvivors before death (ß coefficient = 0.44; 95% CI, 0.05–0.83; p = 0.027), corresponding to a 56% longer ICU stay. This difference was associated with a significantly longer time to withdrawal of life support among dying patients whose surrogates had optimistic prognostic expectations compared with those who did not (ß coefficient = 0.61; 95% CI, 0.16–1.07; p = 0.009).
Conclusions: The prevalent optimism about prognosis among surrogates in ICUs arises both from surrogates’ miscomprehension of physicians’ prognostications and from surrogates holding more hopeful beliefs. This optimism is associated with longer duration of life support at the end of life.
CONTEXT: Hospitalized patients with advanced cancer often face complex, preference-sensitive decisions. How clinicians and patients engage in shared decision-making during goals-of-care discussions is not well understood.
OBJECTIVE: To explore decision-making by patients and clinicians during inpatient goals-of-care discussions.
METHODS: A qualitative study of audio-recorded goals-of-care discussions between hospitalized patients with advanced cancer and their clinicians. Grounded theory was used to analyze transcripts.
RESULTS: Sixty-two patients participated in goals-of-care discussions with 51 unique clinicians. Nearly half of patients (n=30) were female and their mean age was 60.1 years (SD=12.7). A palliative care attending or fellow was present in 58 of the 62 discussions. Decisions centered on three topics: 1) disease-modifying treatments 2) hospice; and 3) code status. Clinicians' approach to decision-making included the following stages: "information exchange," "deliberation," "making a patient-centered recommendation," and "wrap-up: decisional status." Successful completion of each stage varied by the type of decision. When discussing code status, clinicians missed opportunities to engage patients in information exchange and to wrap up decisional status. In contrast, clinicians discussing disease-modifying treatments and hospice failed to integrate patient preferences. Clinicians also missed opportunities to make patient-centered recommendations when discussing treatment decisions.
CONCLUSION: Clinicians missed opportunities to facilitate shared decision-making regarding goals of care, and these missed opportunities differed by type of decision being discussed. Opportunities for clinician communication training include engagement in collaborative deliberation with patients and making patient-centered recommendations in situations of high medical uncertainty.
OBJECTIVE: To evaluate the association between the number of chronic conditions and hospital utilization at the end of life.
BACKGROUND: An understanding of the association of multimorbidity with health care utilization at the end of life may inform interventions to improve quality of care for these patients.
METHODS: A mortality follow-back analysis using Washington State death records and electronic health records. Subject included patients in the UW Medicine system who had at least one chronic condition and died between 2010 and 2015. Utilization was measured by inpatient admissions, emergency department use, and intensive care unit (ICU) admissions in the last 30 days of life.
RESULTS: For all utilization types, patients with three or more chronic conditions (n = 5124) had significantly higher utilization (p < 0.001) in the last 30 days of life than those with two (n = 5775) or one condition (n = 11,169). Comparing 3 versus 2 versus 1 conditions, the following percentages of patients had each type of utilization: inpatient admissions (37% vs. 28% vs. 19%), ED admissions (5% vs. 4% vs. 2%), and ICU care (28% vs. 20% vs. 12%).
DISCUSSION: Multimorbidity was associated with greater health care utilization at the end of life among patients representing a range of ages and covered by diverse insurers.
OBJECTIVES: Use of intensive care is increasing in the United States and may be associated with high financial burden on patients and their families near the end of life. Our objective was to estimate out-of-pocket costs in the last year of life for individuals who required intensive care in the months prior to death and examine how these costs vary by insurance coverage.
DESIGN: Observational cohort study using seven waves of post-death interview data (2002-2014).
PARTICIPANTS: Decedents (n = 2,909) who spent time in the ICU at some point between their last interview and death.
MEASUREMENTS AND MAIN RESULTS: Two-part models were used to estimate out-of-pocket costs for direct medical care and health-related services by type of care and insurance coverage. Decedents with only traditional Medicare fee-for-service coverage have the highest out-of-pocket spending in the last year of life, estimated at $12,668 (95% CI, $9,744-15,592), second to only the uninsured. Medicare Advantage and private insurance provide slightly more comprehensive coverage. Individuals who spend-down to Medicaid coverage have 4× the out-of-pocket spending as those continuously on Medicaid.
CONCLUSIONS: Across all categories of insurance coverage, out-of-pocket spending in the last 12 months of life is high and represents a significant portion of assets for many patients requiring intensive care and their families. Medicare fee-for-service alone does not insulate individuals from the financial burden of high-intensity care, due to lack of an out-of-pocket maximum and a relatively high co-payment for hospitalizations. Medicaid plays an important role in the social safety net, providing the most complete hospital coverage of all the insurance groups, as well as significantly financing long-term care.
BACKGROUND: Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill-defined.
METHODS: We conducted a cross-sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facilitators to these discussions.
RESULTS: The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions.
CONCLUSION: Patients with ACHD report being willing to participate in ACP and palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.
Context: Better understanding of clinicians' skill communicating with their patients and of patients' trust in clinicians is necessary to develop culturally sensitive palliative care interventions. Race/ethnicity, socioeconomic status, and religiosity have been documented as factors influencing quality of communication and trust.
Objectives: The objective of this study was to explore associations of seriously ill patients' race/ethnicity, socioeconomic status, and religiosity with patients' ratings of the quality of clinicians' communication and trust in clinicians.
Methods: An observational analysis was performed using baseline data from a multicenter cluster-randomized trial of a communication intervention. We enrolled consecutive patients with chronic, life-limiting illnesses (n = 537) cared for by primary and specialty care clinicians (n = 128) between 2014 and 2016 in outpatient clinics in Seattle, Washington. We assessed patient demographics (age, gender, race/ethnicity, education, income, and self-rated health status), Duke University Religion Index, Quality of Communication Scale, and Wake Forest Physician Trust Scale. We used probit and linear regression and path analyses to examine associations.
Results: Patients providing higher ratings of clinician communication included those belonging to racial/ethnic minority groups (P = 0.001), those with lower income (P = 0.008), and those with high religiosity/spirituality (P = 0.004). Higher trust in clinicians was associated with minority status (P = 0.018), lower education (P = 0.019), and clinician skill in communication (P < 0.001).
Conclusion: Contrary to prior studies, racial/ethnic minorities and patients with lower income rated communication higher and reported higher trust in their clinicians than white and higher income patients. More research is needed to identify and understand factors associated with quality communication and trust between seriously ill patients and clinicians to guide development of patient-centered palliative care communication interventions.
BACKGROUND: Persons with cystic fibrosis (CF) experience high morbidity and mortality, yet little is known about their palliative care needs and how clinicians may address these needs.
OBJECTIVES: (1) To identify palliative care and advance care planning needs of patients with CF and their families; and (2) to identify clinicians' potential roles in meeting these needs.
METHODS: A mixed-methods study of adult patients (age =18 years) with moderate-to-severe CF [forced expiratory volume in the first second (FEV1) <65% predicted] were recruited from a CF Center. Semi-structured interviews (30-60 minutes) and questionnaires were administered in person or by phone. Grounded theory was used to analyze the interviews. Questionnaires were analyzed descriptively.
RESULTS: Forty-nine patients (FEV1 % range = 19%-63%) participated; the participation rate was 80% for eligible patients. Three main domains of palliative care needs were identified: (1) to be listened to, feel heard, and be "seen"; (2) understanding the context around CF and its trajectory, with the goal of preparing for the future; and (3) information about, and potential solutions to, practical and current circumstances that cause stress. In questionnaires, few patients (4.3%) reported talking with their clinician about their wishes for care if they were to become sicker, but mixed-methods data demonstrated that more than half of participants were willing to receive palliative care services provided those services were adapted to CF.
CONCLUSION: Patients expressed a need for and openness to palliative care services, as well as some reluctance. They appreciated clinician communication that was open, forthcoming, and attuned to individualized concerns.