Journal of palliative medicine
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Observational Study
Illness Understanding and Advance Care Planning in Patients with Advanced Lymphoma.
Background: The prognosis of an aggressive lymphoma can change dramatically following failure of first-line treatment. This sudden shift is challenging for the promotion of illness understanding and advance care planning (ACP). Yet, little is known about illness understanding and ACP in patients with aggressive lymphomas. ⋯ Conclusions: The accuracy of lymphoma patients' illness understanding following first-line treatment is difficult to determine due to the potential for cure following transplant. However, this study suggests that a large proportion of patients with advanced B cell lymphomas may underestimate the severity of their illness, despite discussing illness severity with their medical team. Providing patients with information on prognosis, and the ACP process may increase engagement in ACP.
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Observational Study
Surprise Question and Performance Status Indicate Urgency of Palliative Care Needs in Patients with Advanced Cancer at the Emergency Department: An Observational Cohort Study.
Background: The surprise question (SQ), "Would I be surprised if this patient died within one year?", is a simple instrument to identify patients with palliative care needs. The SQ-performance has not been evaluated in patients with advanced cancer visiting the emergency department (ED). Objective: To evaluate SQ's test characteristics and predictive value in patients with advanced cancer visiting the ED. ⋯ ECOG 3-4 predicted death in NS-patients; addition to the SQ improved c-index (0.65); sensitivity (40%), specificity (92%), PPV (95%), and NPV (29%). Conclusions: At the ED, the SQ plus ECOG 3-4 helps identifying patients with advanced cancer and a limited life expectancy. Its use supports initiating appropriate care related to urgency of palliative care needs.
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Background: Lesbian, gay, bisexual, and transgender (LGBT) patients fear being open about their identities, not receiving equal or safe treatment, and having their family and surrogates disrespected or ignored by providers. Objective: To examine inadequate, disrespectful, and abusive care to patients and family due to sexual orientation or gender identity. Design: A cross-sectional study using an online survey. ⋯ Disrespectful care can negatively impact the trust patients have in providers and institutions, and lead to delaying or avoiding care, or not disclosing relevant information. Partners/spouses and surrogates may be treated disrespectfully, have their treatment decisions ignored or minimized, be denied or have limited access to the patient, and be denied private time. Advocacy and staff training should address barriers to delivering respectful and nondiscriminatory care.
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The addition of a do-not-operate (DNO) section to current medical orders for life-sustaining treatment (MOLST) and physician orders for life-sustaining treatment (POLST) medical order forms would more completely document patients' wishes for invasive interventions at the end of life. We propose a modification of the MOLST and POLST forms, in addition to hospital and electronic medical records, to include a DNO section, in addition to preexisting do-not-resuscitate (DNR) and do-not-intubate (DNI) orders, with the goal of reducing suffering from nonbeneficial surgical interventions in patients with severe illness at the end of life.
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Amyotrophic lateral sclerosis (ALS) is a rapidly progressive and fatal neurodegenerative disorder with enormous palliative care (PC) needs that begin at the time of diagnosis. Although it is an uncommon disease, clinicians who work in PC or hospice are likely to encounter ALS somewhat frequently given the needs of patients with ALS with regard to psychosocial support, symptom management, advance care planning (ACP), caregiver support, and end-of-life care. As such, PC clinicians should be familiar with the basic principles of ALS symptoms, treatments, disease course, and issues around ACP. This article, written by a team of neurologists and PC physicians, seeks to provide PC clinicians with tips to improve their comfort and skills caring for patients with ALS and their families.