RESUMO
With a growing geriatric population in the United States, there is an increased need for healthcare resources and collaborative care for serious illnesses. Patients with chronic illnesses including chronic kidney disease (CKD) often experience severe symptoms and face complex decisions, many of which develop or occur in the outpatient setting. Though many of these symptoms overlap between different chronic illnesses, the CKD population remains largely untapped in terms of access to said resources; until recently, the focus in palliative care has been largely in the oncologic population. Older patients with CKD may benefit from additional tools and resources provided from collaborative care models specifically involving palliative care, especially as this population is high risk for experiencing lack of support. In this review, we use case vignettes to discuss the key concepts and roles of outpatient palliative care and how they can be integrated into the nephrology care of older patients with advanced kidney disease. These highlighted concepts include shared decision-making, selective deprescribing and symptom management, psychosocial support, and advance care planning. We also review different outpatient models for integrative palliative care, and the roles and resources of the palliative multidisciplinary team within these models and how these models can potentially be implemented in the care of CKD patients.
Assuntos
Assistência Ambulatorial , Cuidados Paliativos , Insuficiência Renal Crônica , Humanos , Idoso , Insuficiência Renal Crônica/terapia , Idoso de 80 Anos ou mais , Planejamento Antecipado de Cuidados , Estados Unidos , Feminino , MasculinoRESUMO
Patient and family advisory councils (PFACs) represent one method of engaging patients and families in clinical program development and research, but existing practices too often exclude marginalized and minority voices. As a kidney palliative care team (KidneyPal) at a large academic medical center, we sought to create a PFAC that explicitly considered equity and inclusion in its approach to advisor recruitment. We developed two major innovations to reduce selection bias in our KidneyPal PFAC: adaptation to an entirely virtual process and alteration of the advisor recruitment and enrollment process. We eliminated several potential barriers to participation for our patients and their family members, a population with higher rates of advanced age, nonwhite ethnicity, and limited English proficiency than the local general population. We removed application requirements including lengthy online training modules, detailed employment history, a personal essay, and a criminal background check. The KidneyPal PFAC may act as a model for improving equity and inclusion in virtual patient advisory councils.
Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Pacientes , Etnicidade , RimRESUMO
Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.
Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Medicina , Humanos , Estados Unidos , Cuidados Paliativos , Atenção à SaúdeRESUMO
BACKGROUND: Expanding specialty palliative care within complex health systems involves consideration of patients' unmet needs, clinicians' perceptions of palliative care, and the availability of palliative care resources. Prior to this quality improvement (QI) project, palliative care services in our health system primarily served oncology patients. INTERVENTION: We undertook a prospective strategic planning process that included executive sponsorship and engagement of institutional leaders and clinicians to help define which palliative care services were most needed by the health system. MEASURES: We interviewed and surveyed a broad range of clinicians including physicians, nurse practitioners, and social workers. OUTCOMES: The two most prominent themes that emerged from the stakeholder engagement process were clinicians' wish for specialty-aligned interprofessional palliative care teams and for expansion of nononcology palliative care access. CONCLUSION: Careful needs assessment and stakeholder engagement can result in goal-directed and data-driven expansion of palliative care services within tertiary health care systems.
Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Atenção Terciária à Saúde , Estudos Prospectivos , OncologiaRESUMO
The Coronavirus disease 2019 (COVID-19) pandemic has led to high numbers of critically ill and dying patients in need of expert management of dyspnea, delirium, and serious illness communication. The rapid spread of severe acute respiratory syndrome-Coronavirus-2 creates surges of infected patients requiring hospitalization and puts palliative care programs at risk of being overwhelmed by patients, families, and clinicians seeking help. In response to this unprecedented need for palliative care, our program sought to create a collection of palliative care resources for nonpalliative care clinicians. A workgroup of interdisciplinary palliative care clinicians developed the Palliative Care Toolkit, consisting of a detailed chapter in a COVID-19 online resource, a mobile and desktop Web application, one-page guides, pocket cards, and communication skills training videos. The suite of resources provides expert and evidence-based guidance on symptom management including dyspnea, pain, and delirium, as well as on serious illness communication, including conversations about goals of care, code status, and end of life. We also created a nurse resource hotline staffed by palliative care nurse practitioners and virtual office hours staffed by a palliative care attending physician. Since its development, the Toolkit has helped us disseminate best practices to nonpalliative care clinicians delivering primary palliative care, allowing our team to focus on the highest-need consults and increasing acceptance of palliative care across hospital settings.