Abstract
Background & Aims:
Despite evidence for the benefits of palliative care (PC) referrals and early advance care planning (ACP) discussions for patients with chronic diseases, patients with end-stage liver disease (ESLD) often do not receive such care. We sought to examine physicians’ perceptions of the barriers to PC and timely ACP discussions for patients with ESLD.
Methods:
We conducted a cross-sectional survey of hepatologists and gastroenterologists who provide care to adult patients with ESLD, recruited from the American Association for the Study of Liver Diseases 2018 membership registry. Using a questionnaire adapted from prior studies, we assessed physicians’ perceptions of barriers to PC use and timely ACP discussions; 396 of 1236 eligible physicians (32%) completed the questionnaire.
Results:
The most commonly cited barriers to PC use were cultural factors that affect perception of PC (by 95% of respondents), unrealistic expectations from patients about their prognosis (by 93% of respondents), and competing demands for clinicians’ time (by 91% of respondents). Most respondents (81%) thought that ACP discussions with patients who have ESLD typically occur too late in the course of illness. The most commonly cited barriers to timely ACP discussions were insufficient communication between clinicians and families about goals of care (by 84% of respondents) and insufficient cultural competency training about end-of-life care (81%).
Conclusion:
There are substantial barriers to use of PC and timely discussions about ACP—most hepatologists and gastroenterologists believe that ACP occurs too late for patients with ESLD. Strategies are needed to overcome barriers and increase delivery of high-quality palliative and end-of-life care to patients with ESLD.
Keywords: supportive care, decompensated cirrhosis, quality of life, death
INTRODUCTION:
The diagnosis of end-stage liver disease (ESLD), defined by the development of ascites, jaundice, hepatic encephalopathy, or variceal hemorrhage in patients with cirrhosis, is associated with poor quality of life (QOL) and a median survival of two years in the absence of liver transplantation.1 Unfortunately, ESLD is a terminal condition for many patients, who either die while awaiting a liver transplant or are deemed ineligible for liver transplantation.
The significant morbidity and mortality associated with ESLD makes the provision of early palliative care (PC) and advance care planning (ACP) discussions important considerations for this vulnerable population. The goal of specialty PC is to improve the QOL of patients with serious illnesses by identifying and addressing their physical and psychosocial needs over the course of illness, including at end-of-life (EOL).2 Specialty PC has been shown to improve the QOL of patients with cancer and other life-limiting conditions.3,4 ACP, a critical component of PC, is the process by which patients discuss their expected illness trajectory and their goals and preferences for medical care at the EOL with their clinicians.5 ACP discussions early in the course of illness have been shown to improve the quality of EOL care for patients.6,7 Recent studies suggest, however, that PC services are underutilized for patients with ESLD and that rates of timely ACP discussions for patients with cirrhosis may be low, especially with respect to documentation of goals of care (GOC) at the EOL.8–11
To develop interventions to improve QOL during the course of illness and at EOL in patients with ESLD, a comprehensive understanding of the current barriers to PC utilization and timely ACP discussions is needed. Toward this goal, we conducted a cross-sectional study of a national sample of hepatologists and gastroenterologists to examine their perceptions of current patient, caregiver, institutional, and clinician barriers to PC utilization and timely ACP discussions for patients with ESLD.
METHODS:
Study Population:
Using the American Association for the Study of Liver Diseases membership directory, we identified potentially eligible U.S.-based attending hepatologists and gastroenterologists who provide direct clinical care to adult (age ≥ 18 years) patients with ESLD. The society maintains a web-based directory of its members that includes email addresses.
Survey Administration:
We administered the survey between February and April 2018. Participants received personalized email invitations that contained individualized links to the web-based survey through Research Electronic Data Capture (REDCap, Vanderbilt University, Nashville, TN), a password protected web-based survey tool. We made a total of four follow-up contacts to non-respondents by sending email reminders in the second, third, fourth, and sixth weeks. Participants who completed the survey, and chose to receive an honorarium, received a $20 gift card. The study procedures were deemed exempt from review by the Partners Institutional Review Board.
Survey Instrument:
The survey included four screening questions to confirm study eligibility as well as items that we adapted from prior questionnaires designed to explore physicians’ perceived barriers to PC and optimal EOL care.12–17 We revised and adapted the survey items to ask specifically about the population of patients with ESLD (see Supplementary Materials). All items included in the survey have been validated and used in prior studies.16–20 Because this was a survey assessing physicians’ perceived barriers to PC and ACP, these terms were not explicitly defined in the survey itself so as to not bias physicians’ responses. However, the email introducing the survey to participants specifically asked for their perceptions on specialty PC. The survey was designed to measure the following domains: 1) demographics and clinical practice characteristics (13 items); 2) perceived patient/caregiver barriers to PC utilization (5 items); 3) perceived institutional barriers to utilizing PC services (5 items); 4) perceived clinician barriers to PC utilization (8 items); 5) perceived barriers to timely ACP discussions (5 items); and 6) frequency, setting, and timing of ACP discussions (15 items). For the items on perceived barriers to PC utilization, we asked respondents to rank each item on a 3-point Likert scale: “not a barrier,” “a small barrier,” or “a large barrier.” For the items on frequency of ACP discussions, we asked respondents to rank each item on a 3-point Likert scale: “never,” “occasionally,” or “often.” Aspects of the survey that explored physicians’ perceptions of PC will be the focus of a separate publication.
We performed cognitive interviews and pilot testing of the survey with eight hepatologists and conducted content analysis to refine the questionnaire and ensure its content validity, readability, and acceptability. We were able to reach thematic saturation with feedback and modified twelve questions based on participants responses, primarily by clarifying ambiguous language. We eliminated five questions due to their repetitive nature.
The conceptual model for our survey is shown in Figure 1.
Figure 1:
Survey Conceptual Model
Statistical Analysis:
The primary aims of this study were descriptive, and we generated graphical summaries of participants’ responses to the survey items by using frequencies and percentages for categorical variables and means and standard deviations for continuous variables. We conducted additional analyses to assess for any differences in responses to perceived barriers to PC utilization and timely ACP discussions (dichotomized as “not a barrier” vs. a “small” or “large” barrier) and timing of ACP discussions by primary role (transplant hepatologist vs. non-transplant hepatologist), prior PC training (any training vs. no training) and time in practice (< 10 years vs ≥ 10 years) using chi-square tests. We considered a p-value of < 0.05 to be statistically significant. We conducted all analyses with STATA version 15.1 (College Station, TX).
RESULTS:
Baseline Characteristics:
In total, 396 of 1,236 (32%) eligible physicians completed the survey [Table 1]. Overall, 39% (156/396) were less than 10 years into clinical practice. Most physicians were transplant hepatologists (237/396, 60%), and most (314/396, 79%) practiced in a teaching hospital. None of the 396 responding physicians had formal (≥ 6 months) PC training. There were no significant differences between respondents and non-respondents based on gender (p=0.2).
Table 1:
Participant Characteristics
| Participant Characteristics (N = 396) | No. (%) |
|---|---|
| Male | 287 (72.5) |
| Hispanic or Latino | 31 (7.8) |
| Race | |
| White | 250 (63.1) |
| Asian | 117 (29.5) |
| Black | 12 (3.0) |
| Native Indian/Native Hawaiian | 3 (0.8) |
| Other | 14 (3.5) |
| Primary role | |
| Transplant hepatologist | 237 (59.8) |
| General hepatologist | 119 (30.1) |
| Gastroenterologist | 34 (8.6) |
| Region | |
| Midwest | 78 (19.7) |
| Northeast | 109 (27.5) |
| South | 114 (28.8) |
| West | 81 (20.5) |
| Years since completing fellowship training | |
| < 10 years | 156 (39.4) |
| 10–20 years | 88 (22.2) |
| > 20 years | 143 (36.1) |
| Missing | 9 (2.3) |
| Time dedicated to clinical responsibilities | |
| < 30% | 36 (9.1) |
| 30 – 60% | 72 (18.2) |
| > 60% | 280 (70.7) |
| Missing | 8 (2.0) |
| Primary practice setting | |
| Private practice | 48 (12.1) |
| Community hospital | 18 (4.5) |
| Teaching hospital | 314 (79.3) |
| Other | 10 (2.5) |
| Missing | 6 (1.5) |
| Board certification | |
| Internal medicine | 303 (76.5) |
| Gastroenterology | 358 (90.4) |
| Transplant hepatology | 215 (54.3) |
| Other | 8 (2.0) |
| Prior training in palliative care | |
| No training | 205 (51.8) |
| Attended courses or rotation in palliative care | 183 (46.2) |
| 6 months or more of formal training | 0 (0.0) |
| Missing | 8 (2.0) |
Attitudes about PC and ACP for patients with ESLD:
Almost all (358/378, 95%) participating physicians agreed that centers providing care for patients with ESLD should have PC services. Most (326/379, 86%) agreed that patients with ESLD would benefit if PC were provided earlier in the course of their illness and that they would trust a PC clinician to care for patients with ESLD. The majority of responding physicians (314/372, 84%) agreed that patients with ESLD who are on the transplantation waiting list should be full code. Most agreed that a hepatologist, as opposed to a PC clinician, is the best person to discuss ACP with patients with ESLD (319/381, 84%). A minority (103/381, 27%) of physicians responded that a hepatologist is the best person to provide PC to patients with ESLD, while the majority of respondents (335/381, 88%) believed that PC specialists would be best suited for this role.
Patient and Caregiver Barriers to PC Utilization:
Figure 2A depicts patient and caregiver factors that physicians considered barriers to PC utilization. The vast majority of physicians (345/365, 95%) reported that cultural factors that influenced the perception of PC were a barrier to PC utilization in their practice. Most physicians perceived unrealistic expectations about prognosis among patients (338/365, 93%) and caregivers (327/362, 90%) as important barriers to PC utilization. We did not detect any differences in responses based on physicians’ primary role, prior PC training, or years in clinical practice.
Figure 2A:
Patient and Caregiver Barriers to Palliative Care Utilization for Patients with End-Stage Liver Disease
Institutional Barriers to PC Utilization:
Physicians identified multiple institutional factors as barriers to PC utilization as depicted in Figure 2B. Physicians most commonly reported the following institutional barriers: Limited reimbursement for time spent providing PC (275/363, 76%) and insufficient recognition by colleagues of the importance of PC (246/362, 68%). Almost half of respondents (167/365, 46%) reported the lack of a PC service as a barrier to PC utilization. There were no significant differences in responses by physicians’ primary role, prior PC training, or years in clinical practice.
Figure 2B:
Institutional Barriers to Palliative Care Utilization for Patients with End-Stage Liver Disease
Clinician Barriers to PC Utilization:
Physicians identified multiple clinician barriers to PC utilization, as depicted in Figure 2C. Physicians most commonly reported the following clinician barriers: Competing demands for clinicians’ time (332/365, 91%), fear that PC destroys patients’ hope (298/361, 82%), and belief that PC begins when active therapy ends (296/365, 81%). There were no significant differences in responses by physicians’ primary role, prior PC training, or years in clinical practice.
Figure 2C:
Clinician Barriers to Palliative Care Utilization for Patients with End-Stage Liver Disease
Barriers to Timely ACP Discussions:
Figure 3 depicts physician-reported barriers to timely ACP discussions for patients with ESLD. Physicians most commonly reported the following as barriers: Inadequate communication between clinicians and families about GOC (303/362, 84%), insufficient cultural competency training surrounding EOL care (292/361, 81%) and insufficient clinician training in communication about EOL care issues (290/365, 80%). Compared to transplant hepatologists, general hepatologists and gastroenterologists were significantly more likely to report inadequate communication between clinicians and families about GOC as a barrier to timely ACP (90.6% vs. 79.3%, p=0.005). Physicians with 10 years or greater of clinical practice were significantly more likely to report insufficient cultural competency training surrounding EOL care as a barrier to timely ACP compared to physicians less than 10 years in practice (85.2% vs. 74.1%, p=0.009).
Figure 3:
Barriers to Timely Advance Care Planning Discussions for Patients with End-Stage Liver Disease
Timing and Setting of ACP Discussions:
Physicians reported the timing and setting of their ACP discussions with patients with ESLD as shown in Table 2. Half of physicians (180/359, 50%) reported having initial discussions that addressed a patient’s resuscitation status during an acute hospitalization, whereas only a minority initially discussed resuscitation status during a period of clinical stability (104/359, 29%) or at the time of diagnosis (39/359, 11%). Physicians reported most frequently having an initial discussion regarding a patient’s preferred site of death (152/358, 42%) and hospice care (148/354, 42%) when death was clearly imminent. Respondents with no prior PC training were significantly more likely to have ACP discussions regarding hospice care when death was clearly imminent than respondents with prior PC training (49.2% vs. 33.7%, p=0.003). Prior PC training was not significantly associated with the timing and setting of ACP discussions regarding resuscitation status and preferred site of death.
Table 2:
Timing and Setting of Initial Advance Care Planning Discussions for Patients with ESLD
| At the time of diagnosis n (%) | During a period of stability n (%) | During an acute hospitalization n (%) | When death is clearly imminent n (%) | |
|---|---|---|---|---|
| Resuscitation status | 39 (10.9) | 104 (29.0) | 180 (50.1) | 36 (10.0) |
| Preferred site of death | 13 (3.6) | 81 (22.6) | 112 (31.3) | 152 (42.5) |
| Hospice care | 9 (2.5) | 68 (19.2) | 129 (36.4) | 148 (41.8) |
Regarding the timeliness of EOL care discussions with patients who have ESLD, 2% (6/361) of physicians responded that these discussions occurred too early, 17% (61/361) responded that they occurred at the right time, and the majority (294/361, 81%) responded that they occurred too late.
DISCUSSION:
In this study, we examined barriers to PC utilization and timely ACP discussions by U.S. hepatologists and gastroenterologists who provide direct clinical care to patients with ESLD. In their responses to our survey, physicians identified numerous barriers to PC utilization. Most physicians responded that cultural misperceptions of PC, unrealistic patient expectations about prognosis, and competing demands for clinicians’ time are the most substantial barriers to PC utilization in their practices. Our findings also highlight deficiencies in the timeliness of ACP discussions in patients with ESLD. Physicians responded that ACP discussions occurred most frequently in the inpatient setting during an acute hospitalization or when death was clearly imminent, with the majority reporting that EOL care discussions with patients who have ESLD occur too late in the course of illness. Our findings underscore the immense barriers to both PC utilization and timely ACP discussions for patients with ESLD and support the need for actionable interventions across multiple domains.
Most physicians responded that patients’ misperceptions about PC are considerable barriers to specialty PC utilization in patients with ESLD. This belief may arise from the misperception that PC equates with EOL care, which has been noted in prior studies of patients with advanced chronic illnesses and may represent a considerable barrier to PC utilization in patients for whom liver transplantation offers potentially curative therapy.21,22 However, there has been a paradigm shift in the role of PC for patients with serious illnesses, with studies demonstrating that the integration of PC early in the course of illness for patients with cancer, including those undergoing curative therapy, improves a wide range of patient outcomes.3,23 Thus, our findings suggest the importance of targeted educational interventions to address contemporary misperceptions of the role of specialty PC by patients with ESLD.
Our results revealed that competing demands for clinicians’ time was the most commonly reported clinician-level barrier to providing quality PC to patients with ESLD. Patients with ESLD have substantial disease-specific complications, the management of which may limit the amount of outpatient time available to discuss PC issues. One potential solution to this problem includes the development of collaborative care models between hepatology and specialty PC services. Outpatient specialty PC visits, ideally temporally coordinated with the hepatology visits, can play a role not only in attending to symptom assessment and ACP, but also in addressing important psychosocial aspects of care, such as patient coping and well-being.24 In turn, involving specialty PC services in the ambulatory setting can complement the medical management of patients with ESLD and help to offset the time pressure to address PC issues during hepatology clinic visits.
It is important to acknowledge, however, that access to PC specialists is limited, particularly in non-academic settings.25,26 In our survey, 46% of respondents identified the absence of PC services in their practice setting as a barrier to referral. Even when specialty PC services are constrained or unavailable, however, utilizing social work, psychology, and psychiatry services can offer additional layers of support for patients with ESLD. Moreover, better preparation of hepatologists would be invaluable even in settings with rich PC resources. Therefore, developing core competencies in PC that can be integrated into hepatology training may represent an important avenue to address the unmet PC needs of patients with ESLD.27
Most responding physicians reported that ACP is both underutilized and delayed for patients with ESLD, and respondents noted inadequate communication among clinicians, patients, and families as an important barrier to timely ACP discussions. Multiple potential explanations are apparent for inadequate communication regarding ACP for patients with ESLD. First, the unpredictable illness trajectory of ESLD lends itself to prognostic uncertainty which may delay ACP discussions between physicians and patients.28 Second, the belief that patients with ESLD who are on the transplant waiting list should have full code status may preclude EOL care discussions for transplant candidates.29 Finally, physicians reported that clinician training in communication on ACP is insufficient, which was also noted in a prior survey study of liver professionals in the United Kingdom.30 Our findings underscore the critical need to develop and test interventions that focus on enhancing clinician communication of ACP for patients with ESLD to improve the timeliness and effectiveness of EOL care discussions.
This study has important limitations. First, our survey results may be subject to participation bias, given a response rate of 32%, and we lack information regarding the primary role and prior PC training of non-respondents. Second, the terms “palliative care” and “advance care planning” were not specifically defined within the survey so it is unclear if respondents were thinking about these terms similarly. Third, physicians’ perceptions of what constitutes a “small” vs. “large” barrier can be subjective and is a limitation of the survey instrument utilized in this study. Fourth, most of our respondents practiced at an academic center, which may limit the generalizability of our results. Further studies are needed to ascertain additional institutional-level barriers to PC referrals for patients with ESLD in community and private practice settings. Finally, we limited this survey to physicians; assessing the perceptions of patients with ESLD and their care-givers regarding the role of PC and ACP discussions is a critical area of research that will merit further study.
In conclusion, our study demonstrates that hepatologists and gastroenterologists perceive substantial barriers to PC utilization and timely ACP discussions for patients with ESLD, and most responding physicians believe that EOL care discussions occur too late in the course of illness in this population. Multiple interventions targeted at patients, caregivers, institutions, and clinicians are needed to overcome barriers to improve the delivery of high-quality palliative and EOL care for patients with ESLD.
Supplementary Material
What You Need to Know.
Background:
Despite evidence for the benefits of palliative care (PC) referrals and early advance care planning (ACP) discussions for patients with chronic diseases, patients with end-stage liver disease (ESLD) often do not receive such care.
Findings:
We sent a survey to hepatologists and gastroenterologists to determine their perceptions of the barriers to PC and timely ACP discussions for patients with ESLD. We identified several barriers to use of PC and timely discussions about ACP—most hepatologists and gastroenterologists believe that ACP occurs too late for patients with ESLD.
Implications for patient care:
Strategies are needed to overcome barriers and increase delivery of high-quality palliative and end-of-life care to patients with ESLD.
Acknowledgments
Funding/Support: NIH DK078772 (RTC)
Abbreviations:
- ACP
advance care planning
- EOL
end-of-life
- ESLD
end-stage liver disease
- GOC
goals of care
- PC
palliative care
- QOL
quality of life
Footnotes
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Financial Disclosures: The other authors have no personal or financial disclosures or conflicts of interest to declare related to this research and manuscript
REFERENCES:
- 1.D’Amico G, Garcia-Tsao G, Pagliaro L. Natural history and prognostic indicators of survival in cirrhosis: a systematic review of 118 studies. J Hepatol. 2006;44(1):217–231. [DOI] [PubMed] [Google Scholar]
- 2.WHO | WHO Definition of Palliative Care. World Health Organization. WHO Web site. http://www.who.int/cancer/palliative/definition/en/. Published 2012. Updated 2012-01-28 15:48:11. Accessed June 30, 2018.
- 3.Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. The New England journal of medicine. 2010;363(8):733–742. [DOI] [PubMed] [Google Scholar]
- 4.Tulsky JA. Improving quality of care for serious illness: findings and recommendations of the Institute of Medicine report on dying in America. JAMA Intern Med. 2015;175(5):840–841. [DOI] [PubMed] [Google Scholar]
- 5.Brisebois A, Ismond KP, Carbonneau M, Kowalczewski J, Tandon P. Advance care planning (ACP) for specialists managing cirrhosis: A focus on patient-centered care. Hepatology. 2018;67(5):2025–2040. [DOI] [PubMed] [Google Scholar]
- 6.Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc. 2007;55(2):189–194. [DOI] [PubMed] [Google Scholar]
- 8.Poonja Z, Brisebois A, van Zanten SV, Tandon P, Meeberg G, Karvellas CJ. Patients With Cirrhosis and Denied Liver Transplants Rarely Receive Adequate Palliative Care or Appropriate Management. Clinical Gastroenterology and Hepatology. 2014;12(4):692–698. [DOI] [PubMed] [Google Scholar]
- 9.Rush B, Walley KR, Celi LA, Rajoriya N, Brahmania M. Palliative Care Access for Hospitalized Patients with End Stage Liver Disease Across the United States. Hepatology. 2017. [DOI] [PubMed] [Google Scholar]
- 10.Patel AA, Walling AM, Ricks-Oddie J, May FP, Saab S, Wenger N. Palliative Care and Health Care Utilization for Patients With End-Stage Liver Disease at the End of Life. Clin Gastroenterol Hepatol. 2017;15(10):1612–1619.e1614. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Kathpalia P, Smith A, Lai JC. Underutilization of palliative care services in the liver transplant population. World Journal of Transplantation. 2016;6(3):594. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Cherny NI, Catane R, European Society of Medical Oncology Taskforce on P, Supportive C. Attitudes of medical oncologists toward palliative care for patients with advanced and incurable cancer: report on a survery by the European Society of Medical Oncology Taskforce on Palliative and Supportive Care. Cancer. 2003;98(11):2502–2510. [DOI] [PubMed] [Google Scholar]
- 13.Milne D, Aranda S, Jefford M, Schofield P. Development and validation of a measurement tool to assess perceptions of palliative care. Psycho-oncology. 2013;22(4):940–946. [DOI] [PubMed] [Google Scholar]
- 14.Nelson JE, Angus DC, Weissfeld LA, et al. End-of-life care for the critically ill: A national intensive care unit survey. Crit Care Med. 2006;34(10):2547–2553. [DOI] [PubMed] [Google Scholar]
- 15.Fadul N, Elsayem A, Palmer JL, et al. Supportive versus palliative care: what’s in a name?: a survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer. 2009;115(9):2013–2021. [DOI] [PubMed] [Google Scholar]
- 16.Hui D, Park M, Liu D, Reddy A, Dalal S, Bruera E. Attitudes and Beliefs Toward Supportive and Palliative Care Referral Among Hematologic and Solid Tumor Oncology Specialists. Oncologist. 2015;20(11):1326–1332. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics. 2012;129(4):e975–982. [DOI] [PubMed] [Google Scholar]
- 18.Odejide OO, Cronin AM, Condron N, Earle CC, Wolfe J, Abel GA. Timeliness of End-of-Life Discussions for Blood Cancers: A National Survey of Hematologic Oncologists. JAMA Intern Med. 2016;176(2):263–265. [DOI] [PubMed] [Google Scholar]
- 19.Odejide OO, Cronin AM, Condron NB, et al. Barriers to Quality End-of-Life Care for Patients With Blood Cancers. J Clin Oncol. 2016;34(26):3126–3132. [DOI] [PubMed] [Google Scholar]
- 20.Colman RE, Curtis JR, Nelson JE, et al. Barriers to Optimal Palliative Care of Lung Transplant Candidates. Chest. 2013;143(3):736. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Davison SN, Jhangri GS, Koffman J. Knowledge of and attitudes towards palliative care and hospice services among patients with advanced chronic kidney disease. BMJ Support Palliat Care. 2016;6(1):66–74. [DOI] [PubMed] [Google Scholar]
- 22.Zimmermann C, Swami N, Krzyzanowska M, et al. Perceptions of palliative care among patients with advanced cancer and their caregivers. CMAJ. 2016;188(10):E217–227. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.El-Jawahri A, LeBlanc T, VanDusen H, et al. Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplantation: A Randomized Clinical Trial. JAMA. 2016;316(20):2094–2103. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Yoong J, Park ER, Greer JA, et al. Early palliative care in advanced lung cancer: a qualitative study. JAMA Intern Med. 2013;173(4):283–290. [DOI] [PubMed] [Google Scholar]
- 25.Schenker Y, Arnold R. The Next Era of Palliative Care. JAMA. 2015;314(15):1565–1566. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26.Lupu D, Force AAoHaPMWT. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage. 2010;40(6):899–911. [DOI] [PubMed] [Google Scholar]
- 27.Walling AM, Ahluwalia SC, Wenger NS, et al. Palliative Care Quality Indicators for Patients with End-Stage Liver Disease Due to Cirrhosis. Digestive Diseases and Sciences. 2017;62(1):84–92. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Kimbell B, Boyd K, Kendall M, Iredale J, Murray SA. Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study. BMJ Open. 2015;5(11). [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Langberg KM, Kapo JM, Taddei TH. Palliative Care in Decompensated Cirrhosis: A Review. Liver Int. 2017. [DOI] [PubMed] [Google Scholar]
- 30.Low J, Vickerstaff V, Davis S, et al. Palliative care for cirrhosis: a UK survey of health professionals’ perceptions, current practice and future needs. Frontline Gastroenterol. 2016;7(1):4–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
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