RESUMEN
Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.
RESUMEN
As many people with intellectual disabilities (ID) live longer, the need for access to quality palliative care (PC) rises. People with ID realize significant barriers and inequities in accessing health care and PC. The need for integrated disability and PC services with extensive collaboration is great. The following tips are for PC clinicians caring for people with ID, their families, caregivers, and the community. While patient-centered care is difficult to distill into "tips," this article, written by an interdisciplinary team of PC and ID specialists, offers resources and references to improve the care provided to people with ID and serious illnesses.
Asunto(s)
Cuidados Paliativos , HumanosRESUMEN
People with intellectual disabilities (IDs) are living longer, with many experiencing significant barriers to accessing palliative care and hospice services. Families, caregivers, and direct support professionals comprise essential portions of the community of support often surrounding a person with IDs. For a variety of reasons, including clinician bias and communication difficulties, many people with IDs are excluded from critical conversations regarding their health and life. This article uses a blended case study to explore the complexities and unique considerations in ensuring ethical and practical end-of-life care for people with IDs. Decision-making must center on the person with ID and include them in ways they can understand, thus facilitating their right to autonomy. A collaborative approach to care with shared expertise between caregivers and hospice and palliative care services is key to providing effective, patient-centered care at the end of life. There are tremendous areas of opportunity to improve end-of-life care for this population by partnering with people with IDs, their families, and caregivers.
RESUMEN
Discussing difficult and personal topics is not new to those practicing palliative care. Specialty-level consultation is often sought to facilitate complex and uncomfortable conversations on death and dying. Palliative care (PC) providers focus on patient and family needs through the lens of whole-person care. Sexuality is an important component of every person's identity, yet providers often avoid this topic. Avoiding conversations about sexuality is especially strong when the patient has a serious illness. PC providers are recognized communication experts, although current curricula offer little training on how to incorporate discussions regarding this important aspect of personhood. Using case discussions, we offer strategies for examining sexuality and incorporating sex-positive interventions into practice. By highlighting how sexuality and PC intersect, we hope to foster a community of interdisciplinary PC providers who practice what we have termed sex-positive palliative care.
