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1.
Am J Respir Crit Care Med ; 206(6): e44-e69, 2022 09 15.
Artigo em Inglês | MEDLINE | ID: mdl-36112774

RESUMO

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.


Assuntos
Planejamento Antecipado de Cuidados , Cuidados Paliativos , Continuidade da Assistência ao Paciente , Humanos , Políticas , Sociedades Médicas , Estados Unidos
2.
Palliat Support Care ; 21(1): 12-19, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35236541

RESUMO

OBJECTIVE: To describe the development and implementation of a novel tool designed to enhance nurse-patient communication in a major academic cancer center, which nurses can learn quickly, incorporate into their primary palliative care practice, and broadly disseminate in order to improve the patient experience. METHOD: An evidence-based empathic communication tool and educational program were designed to provide essential skills to oncology nurses in having discussions with patients about their personal values. Evaluation included nurse focus groups, pre- and post-course evaluations and interviews, and patient questionnaires. RESULTS: Nurses were satisfied with the educational program and found the communication tool effective in a variety of clinical situations including discussions about personal values. Patients reported increased occurrences of these discussions when nurses utilized the framework (97% vs. 58%, p < 0.0001) and a higher quality of clinician communication (mean [SD] from 0 = very worst to 10 = very best: 7.18 [2.3] vs. 5.04 [2.9], p = 0.001). SIGNIFICANCE OF RESULTS: Skilled, empathic communication is an essential component of high-quality primary palliative care. Oncology nurses are well suited to lead communication and provide this care as part of an interprofessional team. The training and tool described here are targeted and efficient, and prepare nurses to respond skillfully to emotion while facilitating important discussions about patient values.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Enfermeiras e Enfermeiros , Humanos , Cuidados Paliativos , Oncologia , Comunicação
3.
Palliat Support Care ; 21(3): 378-384, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37016910

RESUMO

OBJECTIVES: On 3-4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: "healing hearts and communities." We describe lessons learned in anticipation of the fourth annual conference to be held on 3-4 October 2023. METHODS: Description of the third annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event. SIGNIFICANCE OF RESULTS: The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Estados Unidos , Cuidados Paliativos , Atenção à Saúde
4.
Cancer ; 128(18): 3400-3407, 2022 09 15.
Artigo em Inglês | MEDLINE | ID: mdl-35866716

RESUMO

BACKGROUND: Goals of care (GOC) documentation is important but underused. We aimed to improve oncologist GOC documentation and end-of-life (EOL) care. METHODS: In April 2020, our cancer center launched a GOC note template, including optional fields for documenting discussion with the patient about: cancer natural history, goals, and/or EOL (resuscitation preferences, hospice receptivity). Associations between GOC notes and EOL care were evaluated. RESULTS: Among 1721 patients dying between June 1, 2020 and June 30, 2021, median days from first GOC note (± with documentation of EOL discussion) to death was 92, whereas a GOC note including EOL discussion ("GOC EOL note"), specifically, was 31. Patients with a first GOC note >60 days before death spent fewer days inpatient (6.7 vs 10.6 days, p < .001). Among patients with GOC EOL notes, those with such documentation >30 days before death had fewer inpatient (5 vs 11, p < .001) and intensive care unit days (0.5 vs 1.5, p < .001), more hospice referrals (57% vs 44%, p = .003), and less chemotherapy ≤14 days before death (6% vs 11%, p = .010). Of 925 admissions of patients dying within ≤30 days, those with GOC EOL notes were shorter (7 vs 9 days, p = .013) but not associated with more hospice discharge (30% vs 25%, p = .163). Oncologist (vs nononcologist) GOC documentation and earlier documentation of EOL discussion were associated in subset analyses with less inpatient care and more hospice referrals. CONCLUSIONS: Documentation of GOC, including EOL discussions, is associated with favorable performance on accepted indicators of quality EOL care.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Oncologistas , Assistência Terminal , Documentação , Humanos , Planejamento de Assistência ao Paciente
5.
BMC Palliat Care ; 21(1): 29, 2022 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-35249532

RESUMO

BACKGROUND: Advance care planning, the process through which patient values and goals are explored and documented, is a core quality indicator in cancer care. However, patient values are predominantly elicited at the end of life; patient values earlier in serious illness are not clearly delineated. The objective of this analysis is to assess the content of patient-verified summaries of health-related values among newly diagnosed cancer outpatients in order to develop a theoretical framework to guide future values discussions and optimize person-centered oncologic care. METHODS: Values summaries among patients with gastrointestinal (GI) cancers or myelodysplastic syndrome (MDS) were extracted from the medical record. Modified grounded theory analysis included interdisciplinary team coding of values summaries to identify key domains; code categorization; and identification of thematic constructs during successive consensus meetings. A final round of coding stratified themes by disease type. RESULTS: Analysis of 128 patient values summary documents from 67 patients (gastrointestinal [GI] cancers, n = 49; myelodysplastic syndrome [MDS], n = 18) generated 115 codes across 12 categories. Resultant themes demonstrated patients' focus on retaining agency, personhood and interpersonal connection amidst practical and existential disruption caused by cancer. Themes coalesced into a theoretical framework with 5 sequenced constructs beginning with the cancer diagnosis, leading to 3 nesting constructs of individual identity (character), interpersonal (communication) preferences and needs, and social identity (connection), signifying sources of meaning and fulfillment. Values differences between GI cancer and MDS patients-including greater focus on normalcy, prognosis, and maintaining professional life among GI patients-reflected the distinct therapeutic options and prognoses across these disease groups. CONCLUSIONS: Patient values reflect goals of meaning-making and fulfillment through individual agency and interpersonal supports in the setting of a newly diagnosed cancer. Early, nurse-led values discussions provide important and patient-specific data that are informative and likely actionable by clinicians in the delivery of person-centered care. Values can also facilitate discussions between patients and families and clarify patient preferences.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias Gastrointestinais , Comunicação , Neoplasias Gastrointestinais/diagnóstico , Humanos , Oncologia , Preferência do Paciente , Pesquisa Qualitativa
6.
Palliat Support Care ; 20(1): 138-140, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-35227336

RESUMO

BACKGROUND: Spiritual distress is a common symptom among patients with cancer. Spiritual injury (SI), a type of spiritual distress, occurs when there is a breakdown in the relationship between the individual and their higher power. Patients who experience spiritual injury may have poor health outcomes. METHODS: A case report of a woman with stage IV non-small cell lung cancer who had experienced a SI. RESULTS: The palliative care team, in collaboration with the palliative care chaplain, was able to recognize that the patient had experienced a SI. They were able to help the patient to process and reflect upon this experience and ultimately treat her suffering. SIGNIFICANCE OF RESULTS: All palliative care providers should assess their patients' spiritual health and monitor for the existence of SI.


Assuntos
Carcinoma Pulmonar de Células não Pequenas , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias Pulmonares , Carcinoma Pulmonar de Células não Pequenas/complicações , Clero , Feminino , Humanos , Neoplasias Pulmonares/complicações , Cuidados Paliativos , Espiritualidade
7.
Palliat Support Care ; 20(3): 307-312, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35241195

RESUMO

OBJECTIVE: On October 5-6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: "Leave No One Behind - Equity in Access to Palliative Care." We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3-4, 2022. METHODS: Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines. SIGNIFICANCE OF RESULTS: The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.


Assuntos
COVID-19 , Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidados Paliativos , Estados Unidos
8.
J Med Internet Res ; 23(2): e21615, 2021 02 17.
Artigo em Inglês | MEDLINE | ID: mdl-33595448

RESUMO

BACKGROUND: The COVID-19 pandemic has shined a harsh light on a critical deficiency in our health care system: our inability to access important information about patients' values, goals, and preferences in the electronic health record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly diagnosed cancer patients as part of routine comprehensive cancer care. Such conversations include not only the patient's wishes for care at the end of life but also more holistic personal values, including sources of strength, concerns, hopes, and their definition of an acceptable quality of life. In addition, health care providers use a structured template to document their discussions of patient goals of care. OBJECTIVE: To provide ready access to key information about the patient as a person with individual values, goals, and preferences, we undertook the creation of the Patient Values Tab in our center's EHR to display this information in a single, central location. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality as well as our initial implementation experience and plans for evaluation. METHODS: We first convened a working group of experts from multiple departments, including medical oncology, health informatics, information systems, nursing informatics, nursing education, and supportive care, and a user experience designer. We conducted in-depth, semistructured, audiorecorded interviews of over 100 key stakeholders. The working group sought consensus on the tab's main content, homing in on high-priority areas identified by the stakeholders. The core content was mapped to various EHR data sources. We established a set of high-level design principles to guide our process. Our user experience designer then created wireframes of the tab design. The designer conducted usability testing with physicians, nurses, and other health professionals. Data validation testing was conducted. RESULTS: We have already deployed the Patient Values Tab to a pilot sample of users in the MSK Gastrointestinal Medical Oncology Service, including physicians, advanced practice providers, nurses, and administrative staff. We have early evidence of the positive impact of this EHR innovation. Audit logs show increasing use. Many of the initial user comments have been enthusiastically positive, while others have provided constructive suggestions for additional tab refinements with respect to format and content. CONCLUSIONS: It is our challenge and obligation to enrich the EHR with information about the patient as a person. Realization of this capability is a pressing public health need requiring the collaboration of technological experts with a broad range of clinical leaders, users, patients, and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction.


Assuntos
COVID-19/diagnóstico , Registros Eletrônicos de Saúde/organização & administração , Informática Médica/métodos , Cuidados Paliativos/métodos , Qualidade de Vida/psicologia , Design Centrado no Usuário , Humanos
9.
Palliat Support Care ; 19(2): 182-186, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33715662

RESUMO

OBJECTIVE: On October 10, 2020, the Memorial Sloan Kettering Cancer Center Supportive Care Service hosted their first-ever United States (US) World Hospice and Palliative Care Day (WHPCD) Celebration. The purpose of this article is to describe the US inaugural event in alignment with the broader goals of WHPCD and provide lessons learned in anticipation of the second annual conference to be held on October 5-6, 2021. METHODS: Description of the inaugural event in the context of COVID-19 and WHPCD, co-planning conference team reflection, and attendee survey responses. RESULTS: The Worldwide Hospice Palliative Care Alliance initially launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The US-based innovative virtual conference featured 23 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across nine diverse sessions addressing priorities at the intersection of COVID-19, social injustice, and the global burden of serious health-related suffering. Two primary aims guided the event: community building and wisdom sharing. Nearly 270 registrants from at least 16 countries and one dozen states across the US joined the free program focused on both personal and professional development. SIGNIFICANCE OF RESULTS: Unlike many other academic conferences and professional gatherings that were relegated to online forums due to pandemic-related restrictions, the US WHPCD Celebration was intentionally established to create a virtual coming together for collective reflection on the barriers and facilitators of palliative care delivery amid vast societal change. The goal to ensure a globally relevant and culturally inclusive agenda will continue to draw increased participation at an international level during future annual events. Finally, the transparent and respectful sharing of palliative care team experiences in the year preceding the conference established a safe environment for both individual expression and scholarly discussion.


Assuntos
Aniversários e Eventos Especiais , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , COVID-19/epidemiologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Hospitais para Doentes Terminais/organização & administração , Humanos , Estados Unidos
10.
Crit Care Med ; 46(5): 699-704, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29462004

RESUMO

OBJECTIVES: Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time. DESIGN: Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial. SETTINGS: Medical ICUs at four U.S. hospitals. PARTICIPANTS: Family members of patients with chronic critical illness (adults mechanically ventilated for ≥ 7 d and expected to remain ventilated and survive for ≥ 72 hr) who participated in the active arm of a communication intervention study. INTERVENTIONS: Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner. MEASUREMENTS AND MAIN RESULTS: Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens. CONCLUSIONS: Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care.


Assuntos
Doença Crônica/terapia , Estado Terminal/terapia , Tomada de Decisões , Família/psicologia , Cuidadores , Feminino , Teoria Fundamentada , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Defesa do Paciente/psicologia , Pesquisa Qualitativa
11.
Am J Respir Crit Care Med ; 196(7): 864-872, 2017 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-28387538

RESUMO

RATIONALE: Information from clinicians about the expected course of the patient's illness is relevant and important for decision-making by surrogates for chronically critically ill patients on mechanical ventilation. OBJECTIVES: To observe how surrogates of chronically critically ill patients respond to information about prognosis from palliative care clinicians. METHODS: This was a qualitative analysis of a consecutive sample of audio-recorded meetings from a larger, multisite, randomized trial of structured informational and supportive meetings led by a palliative care physician and nurse practitioner for surrogates of patients in medical intensive care units with chronic critical illness (i.e., adults mechanically ventilated for ≥7 days and expected to remain ventilated and survive for ≥72 h). MEASUREMENTS AND MAIN RESULTS: A total of 66 audio-recorded meetings involving 51 intervention group surrogates for 43 patients were analyzed using grounded theory. Six main categories of surrogate responses to prognostic information were identified: (1) receptivity, (2) deflection/rejection, (3) emotion, (4) characterization of patient, (5) consideration of surrogate role, and (6) mobilization of support. Surrogates responded in multiple and even antithetical ways, within and across meetings. CONCLUSIONS: Prognostic disclosure by skilled clinician communicators evokes a repertoire of responses from surrogates for the chronically critically ill. Recognition of these response patterns may help all clinicians better communicate their support to patients and families facing chronic critical illness and inform interventions to support surrogate decision-makers in intensive care units. Clinical trial registered with www.clinicaltrials.gov (NCT 01230099).


Assuntos
Doença Crônica/psicologia , Cuidados Críticos/psicologia , Estado Terminal/psicologia , Tomada de Decisões , Família/psicologia , Cuidados Paliativos/psicologia , Cuidados Críticos/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Relações Profissional-Família , Prognóstico , Respiração Artificial/psicologia , Respiração Artificial/estatística & dados numéricos
13.
JAMA ; 316(1): 51-62, 2016 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-27380343

RESUMO

IMPORTANCE: Family caregivers of patients with chronic critical illness experience significant psychological distress. OBJECTIVE: To determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression. DESIGN, SETTING, AND PARTICIPANTS: A multicenter randomized clinical trial conducted from October 2010 through November 2014 in 4 medical intensive care units (ICUs). Adult patients (aged ≥21 years) requiring 7 days of mechanical ventilation were randomized and their family surrogate decision makers were enrolled in the study. Observers were blinded to group allocation for the measurement of the primary outcomes. INTERVENTIONS: At least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention) compared with provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group. MAIN OUTCOMES AND MEASURES: The primary outcome was Hospital Anxiety and Depression Scale symptom score (HADS; score range, 0 [best] to 42 [worst]; minimal clinically important difference, 1.5) obtained during 3-month follow-up interviews with the surrogate decision makers. Secondary outcomes included posttraumatic stress disorder experienced by the family and measured by the Impact of Events Scale-Revised (IES-R; total score range, 0 [best] to 88 [worst]), discussion of patient preferences, hospital length of stay, and 90-day survival. RESULTS: Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean HADS score, 12.2 vs 11.4, respectively; between-group difference, 0.8 [95% CI, -0.9 to 2.6]; P = .34). Posttraumatic stress disorder symptoms were higher in the intervention group (adjusted mean IES-R score, 25.9) compared with the control group (adjusted mean IES-R score, 21.3) (between-group difference, 4.60 [95% CI, 0.01 to 9.10]; P = .0495). There was no difference between groups regarding the discussion of patient preferences (intervention, 75%; control, 83%; odds ratio, 0.63 [95% CI, 0.34 to 1.16; P = .14]). The median number of hospital days for patients in the intervention vs the control group (19 days vs 23 days, respectively; between-group difference, -4 days [95% CI, -6 to 3 days]; P = .51) and 90-day survival (hazard ratio, 0.95 [95% CI, 0.65 to 1.38], P = .96) were not significantly different. CONCLUSIONS AND RELEVANCE: Among families of patients with chronic critical illness, the use of palliative care-led informational and emotional support meetings compared with usual care did not reduce anxiety or depression symptoms and may have increased posttraumatic stress disorder symptoms. These findings do not support routine or mandatory palliative care-led discussion of goals of care for all families of patients with chronic critical illness. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01230099.


Assuntos
Ansiedade/terapia , Cuidadores/psicologia , Estado Terminal , Depressão/terapia , Família , Cuidados Paliativos , Ansiedade/diagnóstico , Doença Crônica , Tomada de Decisões , Depressão/diagnóstico , Feminino , Humanos , Unidades de Terapia Intensiva , Tempo de Internação , Masculino , Pessoa de Meia-Idade , Folhetos , Preferência do Paciente , Procurador , Transtornos de Estresse Pós-Traumáticos/etiologia , Transtornos de Estresse Pós-Traumáticos/psicologia
14.
Crit Care Med ; 43(9): 1964-77, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26154929

RESUMO

OBJECTIVES: To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; to discuss key prognostic aids and their limitations for neurocritical illnesses; to review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; and to describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. DATA SOURCES: A search of PubMed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term "palliative care," "supportive care," "end-of-life care," "withdrawal of life-sustaining therapy," "limitation of life support," "prognosis," or "goals of care" together with "neurocritical care," "neurointensive care," "neurological," "stroke," "subarachnoid hemorrhage," "intracerebral hemorrhage," or "brain injury." DATA EXTRACTION AND SYNTHESIS: We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert advisory board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. CONCLUSIONS: Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support will provide clinicians a framework to address decision making at a time of crisis that enhances patient/family autonomy and clinician professionalism.


Assuntos
Encefalopatias/terapia , Cuidados Críticos/organização & administração , Unidades de Terapia Intensiva/organização & administração , Cuidados Paliativos/organização & administração , Assistência Terminal/organização & administração , Comunicação , Tomada de Decisões , Indicadores Básicos de Saúde , Humanos , Planejamento de Assistência ao Paciente , Prognóstico , Fatores de Tempo , Obtenção de Tecidos e Órgãos/organização & administração , Suspensão de Tratamento
15.
Semin Respir Crit Care Med ; 36(6): 851-8, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26595045

RESUMO

The number of chronically critically ill patients requiring prolonged mechanical ventilation and receiving a tracheostomy is steadily increasing. Early tracheostomy in patients requiring prolonged mechanical ventilation has been proposed to decrease duration of mechanical ventilation and intensive care unit stay, reduce mortality, and improve patient comfort. However, these benefits have been difficult to demonstrate in clinical trials. So how does one determine the appropriate timing for tracheostomy placement in your patient? Here we review the potential benefits and consequences of tracheostomy, the available evidence for tracheostomy timing, communication surrounding the tracheostomy decision, and a patient-centered approach to tracheostomy. Patients requiring > 10 days of mechanical ventilation who are expected to survive their hospitalization likely benefit from tracheostomy, but protocols involving routine early tracheostomy placement do not improve patient outcomes. However, patients with neurologic injury, provided they have a good prognosis for meaningful recovery, may benefit from early tracheostomy. In chronically critically ill patients with poor prognosis, tracheostomy is unlikely to provide benefit and should only be pursued if it is consistent with the patient's values, goals, and preferences. In this setting, communication with patients and surrogates regarding tracheostomy and prognosis becomes paramount. For the foreseeable future, decisions surrounding tracheostomy will remain relevant and challenging.


Assuntos
Doença Crônica/terapia , Cuidados Críticos/normas , Estado Terminal/terapia , Unidades de Terapia Intensiva/organização & administração , Respiração Artificial , Traqueostomia , Humanos , Tempo de Internação , Ensaios Clínicos Controlados Aleatórios como Assunto , Fatores de Tempo , Incerteza
16.
Crit Care Med ; 42(11): 2418-28, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-25167087

RESUMO

OBJECTIVES: Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. DATA SOURCES: We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. STUDY SELECTION: Selected studies included all English-language articles concerning adult patients using the search terms 'intensive care' or 'critical care' with 'palliative care,' 'supportive care,' 'end-of-life care,' or 'ethics.' DATA EXTRACTION: : After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. DATA SYNTHESIS: Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and families face challenges after discharge from intensive care. CONCLUSIONS: Palliative care is increasingly accepted as an essential component of comprehensive care for critically ill patients, regardless of diagnosis or prognosis. A variety of strategies to improve ICU palliative care appear to be effective, and resources including technical assistance and tools are available to support improvement efforts. As the longer-term impact of intensive care on those surviving acute critical illness is increasingly documented, palliative care can help prepare and support patients and families for challenges after ICU discharge. Further research is needed to inform efforts to integrate palliative care with intensive care more effectively and efficiently in and after the ICU and to document improvement using valid and responsive outcome measures.


Assuntos
Unidades de Terapia Intensiva/estatística & dados numéricos , Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos/organização & administração , Assistência Centrada no Paciente/organização & administração , Adulto , Feminino , Reforma dos Serviços de Saúde , Humanos , Masculino , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Papel (figurativo) , Estados Unidos
17.
Patient Educ Couns ; 120: 108100, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38104422

RESUMO

OBJECTIVE: This study aimed to ensure accurate translation and cultural appropriateness of a guide designed to help oncology clinicians provide person-centered care to Spanish-speaking Latinx patients with cancer. METHODS: Initial translation of a clinician-patient values discussion guide in open-ended question format ("Guide") was pretested in interviews with 27 Spanish-speaking individuals, followed by national expert panel review. At three sites, semi-structured, in-depth, audio-recorded interviews in the participant's preferred language (Spanish/English) were then conducted with Latinx patients receiving systemic treatment for a solid tumor malignancy and family joining them at clinic. RESULTS: Interviews of 43 patient/family participants representing diverse Latinx communities addressed the Guide's understandability, acceptability, relevance and responsiveness. Rapid analysis of interviews contributed to cultural adaptation/transcreation of the Guide for a pilot interventional trial. CONCLUSION: Moving beyond translation to transcreation can help promote inclusion, equity, and cultural sensitivity in oncologic care/communication. PRACTICE IMPLICATIONS: Clinicians now have a linguistically- and culturally-adapted guide including questions and prompts to help structure discussions in Spanish or English of health-related values with Latinx patients receiving oncologic care.


Assuntos
Idioma , Neoplasias , Humanos , Competência Cultural , Pacientes , Neoplasias/terapia , Hispânico ou Latino
18.
Ann Am Thorac Soc ; 21(2): 187-199, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38063572

RESUMO

In critical care, the specific, structured approach to patient care known as a "time-limited trial" has been promoted in the literature to help patients, surrogate decision makers, and clinicians navigate consequential decisions about life-sustaining therapy in the face of uncertainty. Despite promotion of the time-limited trial approach, a lack of consensus about its definition and essential elements prevents optimal clinical use and rigorous evaluation of its impact. The objectives of this American Thoracic Society Workshop Committee were to establish a consensus definition of a time-limited trial in critical care, identify the essential elements for conducting a time-limited trial, and prioritize directions for future work. We achieved these objectives through a structured search of the literature, a modified Delphi process with 100 interdisciplinary and interprofessional stakeholders, and iterative committee discussions. We conclude that a time-limited trial for patients with critical illness is a collaborative plan among clinicians and a patient and/or their surrogate decision makers to use life-sustaining therapy for a defined duration, after which the patient's response to therapy informs the decision to continue care directed toward recovery, transition to care focused exclusively on comfort, or extend the trial's duration. The plan's 16 essential elements follow four sequential phases: consider, plan, support, and reassess. We acknowledge considerable gaps in evidence about the impact of time-limited trials and highlight a concern that if inadequately implemented, time-limited trials may perpetuate unintended harm. Future work is needed to better implement this defined, specific approach to care in practice through a person-centered equity lens and to evaluate its impact on patients, surrogates, and clinicians.


Assuntos
Estado Terminal , Tomada de Decisões , Humanos , Estados Unidos , Estado Terminal/terapia , Cuidados Críticos , Consenso , Pacientes
19.
Crit Care Med ; 41(10): 2318-27, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23939349

RESUMO

OBJECTIVE: To review the use of screening criteria (also known as "triggers") as a mechanism for engaging palliative care consultants to assist with care of critically ill patients and their families in the ICU. DATA SOURCES: We searched the MEDLINE database from inception to December 2012 for all English-language articles using the terms "trigger," "screen," "referral," "tool," "triage," "case-finding," "assessment," "checklist," "proactive," or "consultation," together with "intensive care" or "critical care" and "palliative care," "supportive care," "end-of-life care," or "ethics." We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website. STUDY SELECTION: Two members (a physician and a nurse with expertise in clinical research, intensive care, and palliative care) of the interdisciplinary Improving Palliative Care in the ICU Project Advisory Board presented studies and tools to the full Board, which made final selections by consensus. DATA EXTRACTION: We critically reviewed the existing data and tools to identify screening criteria for palliative care consultation, to describe methods for selecting, implementing, and evaluating such criteria, and to consider alternative strategies for increasing access of ICU patients and families to high-quality palliative care. DATA SYNTHESIS: The Improving Palliative Care in the ICU Advisory Board used data and experience to address key questions relating to: existing screening criteria; optimal methods for selection, implementation, and evaluation of such criteria; and appropriateness of the screening approach for a particular ICU. CONCLUSIONS: Use of specific criteria to prompt proactive referral for palliative care consultation seems to help reduce utilization of ICU resources without changing mortality, while increasing involvement of palliative care specialists for critically ill patients and families in need. Existing data and resources can be used in developing such criteria, which should be tailored for a specific ICU, implemented through an organized process involving key stakeholders, and evaluated by appropriate measures. In some settings, other strategies for increasing access to palliative care may be more appropriate.


Assuntos
Comitês Consultivos , Tomada de Decisões , Unidades de Terapia Intensiva , Cuidados Paliativos , Encaminhamento e Consulta , Idoso , Idoso de 80 Anos ou mais , Cuidados Críticos , Humanos
20.
Palliat Med Rep ; 4(1): 316-325, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38089435

RESUMO

Introduction: Person-centered communication is foundational to cancer care. In pilot research, a questionnaire eliciting patients' illness and treatment understanding (ITU) and core health-related values (HRV) through the electronic patient portal demonstrated feasibility, acceptability, and efficacy. The aim of this study was to elicit stakeholder feedback to refine the design of the portal-based intervention, remain end-user centered, and optimize future system-wide integration. Methods: Between April and June 2023, we purposively sampled patients and clinicians from a previous pilot study to participate in a 20-30-minute semistructured interview about their opinions of and experiences with the portal questionnaire on ITU and HRV. An interdisciplinary coding team used a two-phase rapid analysis to identify themes, subthemes, and illustrative participant quotations. Results: Fourteen patients (mean age = 68 years) and 12 clinicians participated (total n = 26). Colorectal cancer was the commonest malignancy (64%) among patients. Clinicians were mostly physicians (50%), nurse practitioners (33%), and registered nurses (17%), with two-thirds having >15 years of experience in their specialty. Analysis generated four themes: (1) clinical utility of questionnaire, (2) barriers to questionnaire implementation, (3) considerations and strategies for modifying the questionnaire, and (4) considerations and strategies for questionnaire implementation. Themes captured key information about incorporating this questionnaire into clinical practice. Conclusion: Patients with cancer and their clinicians found a portal-based ITU and HRV questionnaire clinically useful to improve multiple aspects of person-centered communication. Participant recommendations about questionnaire timing and sharing of questionnaire responses with the clinical team will inform future questionnaire implementation and scaling in clinical settings.

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