Palliative Care Commons^™

Occupational Impact Of Caregivers In Pediatric Palliative Care, Lezlye Ramos, Karen Park, Jazminne O. Arteaga

Spring 2024 Virtual OTD Capstone Symposium

The purpose of this study is to understand the occupational impact for caregivers who had a child with a life-limiting or life-threatening condition who had received pediatric palliative care. A lack of understanding of occupational therapy’s role in end-of-life care ultimately underutilizes and under-prepares occupational therapists to work in this practice area. Becoming a medical family caregiver, neglecting personal needs and desires becomes a norm having a in-direct effect on physical and psychological health and well-being. Findings from this study suggest that it is reasonable to infer that occupational participation among caregivers is influenced by finding time for self and …

Meaningful Engagement Of Patients And Families In A Complex Trial Of Advance Care Planning In Primary Care, Angela K. Combe, Deborah L. Dokken, Mary M. Minniti, Annette M. Totten

Patient Experience Journal

Engagement of Patient and Family Advisors (PFAs) is increasingly recommended as best practice in research. During the design and conduct of a large trial of advance care planning (ACP) in primary care, we expanded on the funder’s (Patient-Centered Outcomes Research Institute®) requirement for an engagement plan and sought to develop an innovative approach to fostering and sustaining meaningful engagement of PFAs throughout all phases of the trial. Structures were developed that integrated PFAs into planning and provided the foundation for their ongoing participation. A continuous quality improvement approach became the framework for ongoing engagement. This involved setting goals; collecting data …

Palliative And End-Of-Life Care Access For Immigrants Living In High-Income Countries: A Scoping Review, Gertrude G. Phiri, Joyce Muge-Sugutt, Davina Porock

Research outputs 2022 to 2026

This scoping review aimed to explore what is known about palliative and End-of-Life (EOL) care access by immigrants with culturally and linguistically diverse (CALD) background living in high-income Organization for Economic Co-operation and Development (OECD) countries. CaLD immigrants have low utilization of palliative care services with patients’ family members taking up the role of caring, leading to immigrants not fully benefiting from the specialized services that are offered to alleviate suffering and promote quality of life. While there is some research in this area mainly in Europe, it cannot be said about all high-income OECD countries. Achieving person-centered care in …

Does Comfort Care Make You Uncomfortable? Use Of The Cares Tool For End-Of-Life Symptom Assessment And Management, Christina Covington

Doctor of Nursing Practice Final Manuscripts

Acute care nurses caring for end-of-life (EOL) patients often feel unprepared for and undereducated about this high-need population. According to current literature, many nurses lack adequate training in providing EOL care. This project aimed to improve symptom management of dying patients by providing acute care nurses education about EOL symptom assessment and medication use for symptom management. The revised Iowa model, which emphasizes clinician involvement, guided this evidence-based practice project. Sixteen acute care nurses received 30-minute in-person education, consisting of instruction in EOL symptom assessment and management via use of the CARES (comfort, airway, restlessness, emotional, self-care) tool and basic …

Improving Palliative Care Education In The Acute Hospital Setting, Maria Klug

Doctor of Nursing Practice Scholarly Project

As the geriatric population grows rapidly, the importance of utilizing and understanding palliative services continues to rise. Although palliative and hospice care are included in different healthcare courses, misconceptions and lack of knowledge continue to serve as barriers to the utilization of palliative care. The purpose was to assess knowledge, improve palliative care education, and increase understanding of the perspectives of the interdisciplinary team involved in acute patient care. The setting was the telemetry unit in a 300-bed acute care Kansas hospital. A mixed design was utilized with a goal of quality improvement in the use of palliative care. The …

A Light In The Dark: End-Of-Life Conversations In Advanced Cancer Patients Improve Caregiver Grief, Nicole Meeks

Clinical Research in Practice: The Journal of Team Hippocrates

A clinical decision report using:

Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, & Prigerson HG. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673. https://doi.org/10.1001/jama.300.14.1665

for a patient with end stage cancer and an anxious caregiver.

Anticipation, Accompaniment, And A Good Death In Perinatal Care., Bryanna S. Moore, Brian S. Carter, Bryan Beaven, Katie House, Joel House

Manuscripts, Articles, Book Chapters and Other Papers

The ethics of perinatal care, and the experiences of families who receive such care, remains a nascent area of inquiry. It can be hard to see how existing "good death" constructs apply to the experiences of fetal patients and their families. In this paper, we explore two themes raised by a case at our fetal health center: anticipation and accompaniment. In this case, a mother presented to our fetal health center; her unborn son, our fetal patient, was diagnosed with life-threatening hypoplastic left heart syndrome and endocardial fibroelastosis. The parents were told that their son's life expectancy, upon birth, was …

The Death Debate: Penumbra Conundrum, Robert F. Johnson

Peer Reviewed Articles

Determination and declaration of death by neurologic criteria, brain death, is an established and legally accepted clinical practice with profound implications. Concerns regarding the accuracy of this diagnosis raise important clinical, ethical, and legal issues. A recent magazine article highlights these concerns by describing a poignant example of a patient meeting accepted clinical and ancillary testing criteria for brain death in the setting of post cardiac arrest hypoxic ischemic encephalopathy (CA-HIE). With continuation of ventilatory and nutritional support, this patient not only survived but over time demonstrated findings that were no longer consistent with brain death. Offered here is a …

Hospital-Based Physicians' Intubation Decisions And Associated Mental Models When Managing A Critically And Terminally Ill Older Patient., Shannon Haliko, Julie Downs, Deepika Mohan, Robert Arnold, Amber E Barnato

Articles, Abstracts, and Reports

BACKGROUND: Variation in the intensity of acute care treatment at the end of life is influenced more strongly by hospital and provider characteristics than patient preferences.

OBJECTIVE: We sought to describe physicians' mental models (i.e., thought processes) when encountering a simulated critically and terminally ill older patient, and to compare those models based on whether their treatment plan was patient preference-concordant or preference-discordant.

METHODS: Seventy-three hospital-based physicians from 3 academic medical centers engaged in a simulated patient encounter and completed a mental model interview while watching the video recording of their encounter. We used an "expert" model to code the …

End-Of-Life Care: Crossing The Bridge From Treatment To Support, Martha C. Romney Bsn, Ms, Jd, Mph

Population Health Matters (Formerly Health Policy Newsletter)

No abstract provided.