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1.
J Palliat Med ; 27(3): 405-410, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37738320

RESUMO

When speaking to public audiences, palliative care advocates often reach for personal experiences of great meaning and significance in their own lives, and often distill those experiences to a key message. However, this approach may not be the most effective way to engage a public audience whose closest experience with palliative care is based on social media or third-hand stories. Research demonstrates that the lay public often starts with inaccurate assumptions about palliative care, including that it is only for people at end of life. These misunderstandings can lead people with serious illness to decline palliative care services that are backed by evidence and demonstrate real benefit. This phenomenon of "declines based on inaccurate assumptions" is widely seen in clinical practice and palliative care demonstration projects. Public messaging is an evidence-based approach to engage more effectively with the public when doing outreach for palliative care. The 10 tips provided are based on a multiyear and multiorganizational project focused on improving the messaging of palliative care for the public. As palliative care services are increasingly expanded and integrated into health systems, public messaging can provide a new approach for building partnerships with the public by offering messages that consistently meet their needs based on their current perceptions. Incorporating public-informed messaging strategies could enable palliative care clinicians and advocates to address the lay public with greater confidence and clarity about how palliative care can serve them, their families, and their communities.


Assuntos
Morte , Cuidados Paliativos , Humanos
3.
JCO Oncol Pract ; 19(8): 669-675, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37327462

RESUMO

PURPOSE: The COVID-19 pandemic has had deleterious effects on oncologist professional and personal well-being, the optimal delivery of quality cancer care, and the future cancer care workforce, with many departing the field. Hence, the identification of evidence-based approaches to sustain oncologists is essential to promote well-being. MATERIALS AND METHODS: We developed a brief, oncologist-centered, virtual group peer support program and tested its feasibility, acceptability, and preliminary impact on well-being. Trained facilitators provided support to peers on the basis of burnout research in oncology with available resources to enhance oncologist resilience. Peers completed pre- and postsurvey assessment of well-being and satisfaction. RESULTS: From April to May 2022, 11 of 15 (73%) oncologists participated in its entirety: mean age 51.1 years (range, 33-70), 55% female, 81.8% Ca, 82% medical oncologists, 63.6% trained ≥15 years, average 30.3 patients/wk (range, 5-60), and 90.9% employed in hospital/health system practice. There was a statistically significant difference in pre- and postintervention well-being (7.0 ± 3.6 v 8.2 ± 3.0, P = .03) with high satisfaction with postgroup experience (9.1 ± 2.5). These quantitative improvements were affirmed by qualitative feedback. These themes included (1) an enhanced understanding of burnout in oncology, (2) shared experience in practice of oncology, and (3) fostering connections with diverse colleagues. Future recommendations proposed included (1) restructuring group format and (2) tailoring groups according to practice setting (academic v community). CONCLUSION: Preliminary results suggest that a brief, innovative oncologist-tailored group peer support program is feasible, acceptable, and beneficial for enhancing well-being dimensions including burnout, engagement, and satisfaction. Additional study is required to refine program components (optimal timing, format) to support oncologist well-being, now during the pandemic and well into recovery.


Assuntos
Esgotamento Profissional , COVID-19 , Oncologistas , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , COVID-19/epidemiologia , Pandemias , Estudos de Viabilidade , Oncologia , Esgotamento Profissional/terapia
4.
J Palliat Med ; 26(6): 751-756, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37126403

RESUMO

Many patients who could benefit from Palliative Care do not receive services because of lack of awareness or misconceptions. This high level of public unfamiliarity combined with inaccurate beliefs equating Palliative Care with dying calls for public messaging designed to increase public familiarity and correct misconceptions. A barrier to widespread public messaging, however, is the scarcity of messages developed with empirical research in public perceptions of the lived experience of receiving palliative care. In this report, we describe qualitative research aimed at identifying the "deep metaphors" associated with palliative care, to provide an empirical foundation for further creative work. We interviewed 8 patients receiving palliative care and 8 caregivers using a qualitative method, Zaltman Metaphor Elicitation Technique, that is specially designed to reveal unconscious metaphors and socially shared associations that participants held about experiencing palliative care. Study participants likened the onset of serious illness as a massive disruption resulting in stunning losses with far-reaching consequences. What serious illness "took away" from them was a sense of certainty about where their lives were going, and these participants described experiencing (1) shame and embarrassment about what was happening to them; (2) a sense that no one was listening to them; (3) feeling lost and uncertain about what to do, feeling stuck; and (4) losing parts of their identity to illness. What they felt in need of, to counter what had been taken away, was (1) validation for what they were going through; (2) agency to determine their own quality of life and have input into their care; (3) guidance to access a network of resources; and (4) regeneration of their self-worth, resulting in a new version of their identity. This research provides guidance for message developers on frames, language, and visuals for future campaigns designed to create public interest in palliative care.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Metáfora , Qualidade de Vida , Cuidadores , Pesquisa Qualitativa
5.
J Pain Symptom Manage ; 63(6): e621-e632, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35595375

RESUMO

CONTEXT: Outcomes after cardiopulmonary resuscitation (CPR) remain poor. We have spent 10 years investigating an "informed assent" (IA) approach to discussing CPR with chronically ill patients/families. IA is a discussion framework whereby patients extremely unlikely to benefit from CPR are informed that unless they disagree, CPR will not be performed because it will not help achieve their goals, thus removing the burden of decision-making from the patient/family, while they retain an opportunity to disagree. OBJECTIVES: Determine the acceptability and efficacy of IA discussions about CPR with older chronically ill patients/families. METHODS: This multi-site research occurred in three stages. Stage I determined acceptability of the intervention through focus groups of patients with advanced COPD or malignancy, family members, and physicians. Stage II was an ambulatory pilot randomized controlled trial (RCT) of the IA discussion. Stage III is an ongoing phase 2 RCT of IA versus attention control in in patients with advanced chronic illness. RESULTS: Our qualitative work found the IA approach was acceptable to most patients, families, and physicians. The pilot RCT demonstrated feasibility and showed an increase in participants in the intervention group changing from "full code" to "do not resuscitate" within two weeks after the intervention. However, Stages I and II found that IA is best suited to inpatients. Our phase 2 RCT in older hospitalized seriously ill patients is ongoing; results are pending. CONCLUSIONS: IA is a feasible and reasonable approach to CPR discussions in selected patient populations.


Assuntos
Reanimação Cardiopulmonar , Tomada de Decisões , Idoso , Estado Terminal , Hospitalização , Humanos , Pacientes Internados , Ordens quanto à Conduta (Ética Médica)
6.
J Palliat Med ; 25(8): 1273-1281, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35285721

RESUMO

Psychedelic-assisted therapy (PAT) is a burgeoning treatment with growing interest across a variety of settings and disciplines. Empirical evidence supports PAT as a novel therapeutic approach that provides safe and effective treatment for people suffering from a variety of diagnoses, including treatment-resistant depression, substance use disorder, and post-traumatic stress disorder. Within the palliative care (PC) field, one-time PAT dosing may lead to sustained reductions in anxiety, depression, and demoralization-symptoms that diminish the quality of life in both seriously ill patients and those at end of life. Despite a well-noted psychedelic renaissance in scholarship and a renewed public interest in the utilization of these medicines, serious illness-specific content to guide PAT applications in hospice and PC clinical settings has been limited. This article offers 10 evidence-informed tips for PC clinicians synthesized through consultation with interdisciplinary and international leading experts in the field with aims to: (1) familiarize PC clinicians and teams with PAT; (2) identify the unique challenges pertaining to this intervention given the current legalities and logistical barriers; (3) discuss therapeutic competencies and considerations for current and future PAT use in PC; and (4) highlight critical approaches to optimize the safety and potential benefits of PAT among patients with serious illness and their caregivers.


Assuntos
Alucinógenos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Ansiedade , Humanos , Cuidados Paliativos , Qualidade de Vida
7.
Artigo em Inglês | MEDLINE | ID: mdl-34750145

RESUMO

OBJECTIVES: Early palliative supportive care has been associated with many advantages in patients with advanced cancer. However, this model is underutilised in patients with haematological malignancies. We investigated the presence and described the frequency of quality indicators for palliative care and end-of-life care in a cohort of patients with acute myeloid leukaemia receiving early palliative supportive care. METHODS: This is an observational, retrospective study based on 215 patients consecutively enrolled at a haematology early palliative supportive care clinic in Modena, Italy. Comprehensive hospital chart reviews were performed to abstract the presence of well-established quality indicators for palliative care and for aggressiveness of care near the end of life. RESULTS: 131 patients received a full early palliative supportive care intervention. All patients had at least one and 67 (51%) patients had four or more quality indicators for palliative care. Only 2.7% of them received chemotherapy in the last 14 days of life. None underwent intubation or cardiopulmonary resuscitation and was admitted to intensive care unit during the last month of life. Only 4% had either multiple hospitalisations or two or more emergency department access. Approximately half of them died at home or in a hospice. More than 40% did not receive transfusions within 7 days of death. The remaining 84 patients, considered late referrals to palliative care, demonstrated sensibly lower frequencies of the same indicators. CONCLUSIONS: Patients with acute myeloid leukaemia receiving early palliative supportive care demonstrated high frequency of quality indicators for palliative care and low rates of treatment aggressiveness at the end of life.

8.
J Palliat Med ; 24(12): 1762-1765, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34668792

RESUMO

Public hesitation to engage in advance care planning, consultation with palliative care, and admission to hospice is a significant barrier to improving patient outcomes. In previous study, we derived five empirically supported messaging principles, and in this project we used these messaging principles to design, place, and analyze a 60-second video for the Oregon Coalition for Living Well with Serious Illness. The video was scripted to emphasize a single message that had emerged from the empirical research: that "you should have a say in your care." We deliberately did not use the term "advance care planning" because our prior focus groups showed that most consumers did not use this term. The marketing plan for the resulting video on Facebook included a paid sponsorship of the full-length video through a Facebook boosted post, and three 10-second ads featuring key lines from the video that tested different elaborations of the central message. Facebook Analytics indicated that the 60-second video was viewed 67,650 times in the week it was promoted. The three 10-second ads, which showed selected moments from the full-length video, were viewed a total of 253,087 times. Of the three 10-second ads, the one emphasizing "What matters to me is being near my family" (65% of clicks) strongly outperformed "I don't want to go out on a machine" and "I've heard so many medical horror stories" (35% for both messages combined) as messages that persuaded viewers to click through the ad to the website. Use of the messaging principles to guide the design and marketing of this Facebook ad shows that (1) the public is interested in serious illness care, (2) that targeted social media can be used to reach a defined public audience, and that (3) this public messaging strategy can be implemented at relatively low cost.


Assuntos
Mídias Sociais , Cuidados Críticos , Estado Terminal , Atenção à Saúde , Grupos Focais , Humanos
10.
JCO Oncol Pract ; 17(7): e427-e438, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34152789

RESUMO

INTRODUCTION: The COVID-19 pandemic is an unprecedented global crisis profoundly affecting oncology care delivery. PURPOSE: This study will describe the occupational and personal consequences of the COVID-19 pandemic on oncologist well-being and patient care. MATERIALS AND METHODS: Four virtual focus groups were conducted with US ASCO member oncologists (September-November 2020). Inquiry and subsequent discussions centered on self-reported accounts of professional and personal COVID-19 experiences affecting well-being, and oncologist recommendations for well-being interventions that the cancer organization and professional societies (ASCO) might implement were explored. Qualitative interviews were analyzed using Framework Analysis. RESULTS: Twenty-five oncologists were interviewed: median age 44 years (range: 35-69 years), 52% female, 52% racial or ethnic minority, 76% medical oncologists, 64% married, and an average of 51.5 patients seen per week (range: 20-120). Five thematic consequences emerged: (1) impact of pre-COVID-19 burnout, (2) occupational or professional limitations and adaptations, (3) personal implications, (4) concern for the future of cancer care and the workforce, and (5) recommendations for physician well-being interventions. Underlying oncologist burnout exacerbated stressors associated with disruptions in care, education, research, financial practice health, and telemedicine. Many feared delays in cancer screening, diagnosis, and treatment. Oncologists noted personal and familial stressors related to COVID-19 exposure fears and loss of social support. Many participants strongly considered working part-time or taking early retirement. Yet, opportunities arose to facilitate personal growth and rise above pandemic adversity, fostering greater resilience. Recommendations for organizational well-being interventions included psychologic or peer support resources, flexible time-off, and ASCO and state oncology societies involvement to develop care guidelines, well-being resources, and mental health advocacy. CONCLUSION: Our study suggests that the COVID-19 pandemic has adversely affected oncologist burnout, fulfillment, practice health, cancer care, and workforce. It illuminates where professional organizations could play a significant role in oncologist well-being.


Assuntos
COVID-19 , Oncologistas , Adulto , Esgotamento Psicológico , Etnicidade , Feminino , Humanos , Masculino , Grupos Minoritários , Pandemias , SARS-CoV-2
11.
J Palliat Med ; 24(11): 1742-1743, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34107222

Assuntos
Pobreza , Humanos
12.
Am Soc Clin Oncol Educ Book ; 41: e339-e353, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34061565

RESUMO

Optimizing the well-being of the oncology clinician has never been more important. Well-being is a critical priority for the cancer organization because burnout adversely impacts the quality of care, patient satisfaction, the workforce, and overall practice success. To date, 45% of U.S. ASCO member medical oncologists report experiencing burnout symptoms of emotional exhaustion and depersonalization. As the COVID-19 pandemic remains widespread with periods of outbreaks, recovery, and response with substantial personal and professional consequences for the clinician, it is imperative that the oncologist, team, and organization gain direct access to resources addressing burnout. In response, the Clinician Well-Being Task Force was created to improve the quality, safety, and value of cancer care by enhancing oncology clinician well-being and practice sustainability. Well-being is an integrative concept that characterizes quality of life and encompasses an individual's work- and personal health-related environmental, organizational, and psychosocial factors. These resources can be useful for the cancer organization to develop a well-being blueprint: a detailed start plan with recognized strategies and interventions targeting all oncology stakeholders to support a culture of community in oncology.


Assuntos
Esgotamento Profissional/psicologia , Oncologia/métodos , Neoplasias/terapia , Oncologistas/psicologia , Estresse Psicológico/prevenção & controle , Esgotamento Psicológico/prevenção & controle , Esgotamento Psicológico/psicologia , COVID-19/epidemiologia , COVID-19/prevenção & controle , COVID-19/virologia , Humanos , Internet , Satisfação no Emprego , Oncologia/organização & administração , Neoplasias/diagnóstico , Pandemias , SARS-CoV-2/isolamento & purificação , SARS-CoV-2/fisiologia , Apoio Social , Estados Unidos
14.
J Palliat Med ; 24(6): 816-819, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33635137

RESUMO

A year ago, we began a project designed to align public messages from 10 organizations involved in advance care planning (ACP), palliative care (PC), and hospice to increase public engagement. By public messaging, we are referring to a well-established evidence-driven method of disseminating information at scale that enables the public to take action to protect their health. Our project plan was upended by the coronavirus disease 2019 (COVID-19) pandemic-but we used the opportunity to conduct focus groups during the pandemic that, compared with focus groups conducted before the pandemic, provide an important portrait of public perceptions of serious illness care that can be used to design for greater public engagement. Our findings can be summarized in three observations. First, misunderstanding of ACP, PC, and hospice is wide ranging and deep. Second, COVID-19 evokes its own brand of confusion and ambivalence that is distinct from other serious illnesses. And third, distrust of the health care system has become the new normal. Despite these findings, our focus group participants strongly endorsed five messaging principles (1) talk up the benefits, (2) present choices for every step, (3) use stories that are positive and aspirational, (4) invite dialogue-more than once, and (5) invoke a new team-of people who matter, clinicians, medical institutions, and community organizations who are ready to help. After listening to 100-word stories describing real patient experiences with ACP, PC, and hospice, our focus group participants expressed interest and appreciation. But to improve public engagement broadly, we need to explain our work to the general public in a way that makes them want to know more.


Assuntos
COVID-19 , Cuidados Críticos , Afeto , Estado Terminal , Humanos , SARS-CoV-2
15.
J Palliat Med ; 24(6): 838-845, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33155862

RESUMO

Background: Oncologists routinely have opportunities for goals-of-care (GoC) discussions with patients. GoC discussions increase the likelihood that patients receive care consistent with their values. However, oncologists often feel ill-equipped to discuss end-of-life care. Objective: To assess the impact of a communication training and coaching intervention (INT) for oncologists during GoC discussions. Design: We randomized oncologists to usual care (UC) or a communication skills training INT, which consisted of an interactive training session and four joint visits with communication coaches. Setting/Subjects: Solid tumor oncologists seeing advanced cancer patients at four hospitals in New York and Connecticut. Measurements: Three blinded coders evaluated recorded encounters before and after INT using a validated tool to assess skill attainment. Results: Oncologists (n = 22) were 32% female and averaged 46 years of age. In baseline visits, INT oncologists (n = 11) and UC oncologists (n = 11) had no difference in the number of mean skills employed out of 8 GoC skills (INT 3.5, UC 2.4; p = 0.18). Post-INT, INT oncologists were significantly more likely to elicit patient values (55% vs. 0%; p = 0.01). There was no significant difference in overall mean skills employed (INT 3.4, UC 2.2; p = 0.14). Assessing for understanding, offering "I wish" statements, and providing prognosis were the least utilized skills among all oncologists. Conclusion: Our real-time communication skills coaching INT resulted in a significant increase in oncologists' ability to elicit patient values during GoC discussions, suggesting that skill acquisition can occur in the face of less intensive training. Future studies can highlight gaps leading to the lack of differences in utilization of other skills.


Assuntos
Tutoria , Oncologistas , Comunicação , Connecticut , Feminino , Objetivos , Humanos , Masculino , New York
16.
J Palliat Med ; 24(1): 46-52, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32614634

RESUMO

Background: Although access to advance care planning (ACP), palliative care, and hospice has increased, public attitudes may still be barriers to their optimal use. Purpose: To synthesize empirical research from disparate sources that describes public perceptions of ACP, palliative care, and hospice in ways that could inform public messaging. Data Sources: Searches of PubMed and other databases were made from January 2011 to January 2020. Study Selection: Studies reporting survey or interview data with the public that asked specifically about awareness and attitudes toward ACP, palliative care, or hospice were included. Data Extraction and Synthesis: Two reviewers independently screened citations, read full texts, and performed data abstraction. Twelve studies met inclusion criteria and included >9800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. For palliative care, 66% to 71% of participants reported no awareness of palliative care, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated palliative care favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions. Limitations: A limited number of studies met inclusion criteria, and some were published in nonpeer reviewed sources. The studies reflect public perceptions pre-COVID-19. Conclusion: Consumer perceptions of ACP, palliative care, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging.


Assuntos
Diretivas Antecipadas/psicologia , COVID-19 , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Pacientes/psicologia , Adulto , Diretivas Antecipadas/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pacientes/estatística & dados numéricos , SARS-CoV-2 , Inquéritos e Questionários , Estados Unidos , Adulto Jovem
17.
Blood Adv ; 4(21): 5492-5500, 2020 11 10.
Artigo em Inglês | MEDLINE | ID: mdl-33166406

RESUMO

Understanding decisional involvement and information preferences in patients with hematologic malignancies may help to optimize physician-patient communication about treatment decisions and align the decision-making processes with patients' preferences. We described and examined factors associated with preferences of patients with hematologic malignancies for decisional involvement, information sources, and presentation of information. In a multicenter observational study, we recruited 216 patients with hematologic malignancies of any stage from September 2003 to June 2007. Patients were asked about their decisional involvement preferences (Control Preferences Scale), information sources (including most useful source of information), and preferences for their oncologists' presentation of treatment success information. We used multivariate logistic regressions to identify factors associated with decisional involvement preferences and usefulness of information sources (physicians vs nonphysicians). Patient-directed, shared, and physician-directed approaches were preferred in 34%, 38%, and 28% of patients, respectively. Physicians and computer/Internet were the most common information sources; 42% perceived physicians as the most useful source. On multivariate analysis, patients with less than a college education (vs postgraduate education) were less likely to perceive their physician as the most useful source (adjusted odds ratio [AOR], 0.46; 95% confidence interval (CI), 0.21-1.00), whereas patients with acute leukemia (vs other blood cancers) were more likely to perceive their physician as the most useful source (AOR, 2.49; 95% CI, 1.07-5.80). In terms of communicating treatment success rates, 70% preferred ≥1 method(s), and 88% preferred presentation in percentages. Our study suggests that decisional involvement and information preferences vary and should be assessed explicitly as part of each decision-making encounter.


Assuntos
Tomada de Decisões , Neoplasias Hematológicas , Neoplasias Hematológicas/terapia , Humanos , Preferência do Paciente , Satisfação do Paciente , Relações Médico-Paciente
18.
BMJ ; 370: m3005, 2020 08 20.
Artigo em Inglês | MEDLINE | ID: mdl-32819922
19.
J Palliat Med ; 23(8): 1130-1131, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32790566
20.
J Palliat Med ; 23(9): 1277-1278, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32721250
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