Palliative Care Commons^™

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 …

Chapter 14: Hospice And End-Of-Life Care, Sally Pelon, Brandon Youker, M. Paola Leon

Books and Contributions to Books

This chapter explores end-of-life issues and concerns as well as the hospice movement’s role in assisting terminally ill individuals. Specific social work assessment and interventions tools are offered considered as well as controversial issues in end-of-life care.

"Farewell" To Prognosis In Shared Decision-Making, Robert F. Johnson

Peer Reviewed Articles

Whether because of a cultural pattern or personal preference, palliative care clinicians encounter persons approaching the end of life who wish to limit or forego prognostic information relating to their situation. This scenario has received attention in a recent motion picture as well as a newly available advance directive modification—the Prognosis Declaration form. The ordinary expectation for end-of-life shared decision-making with a capable person is clinician disclosure of the best effort at prognostic assessment. The optimal match between the expressed values, goals, and preferences of the person with available clinician expertise is hopefully achieved. For the clinician, a person’s choice …

Fostering Productive Conversations In A Kenyan Tertiary Intensive Care Unit: Lessons Learnt, Sayed Karar, Jamila Nambafu, Feroza Daroowalla

Internal Medicine, East Africa

Effective communication remains key in delivery of comprehensive care to patient especially in the intensive care unit (ICU) setting. However, many providers, for various reasons, struggle with the art of effective communication adversely affecting relationship with patients and their families. Little is known or has been published about effective communication in ICUs within sub-Saharan Africa.

The Hapless State Of Amyotrophic Lateral Sclerosis In India: A Comprehensive Look At Life And Medical Services For Als Patients In Rural Himachal Pradesh, Carson J. Bergström

Independent Study Project (ISP) Collection

Amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease is a neurodegenerative disorder that leads to paralysis. The disease requires a high amount of medical intervention and interdisciplinary focus to achieve quality of life for patients. This study looks at ALS patient’s lifestyles, their access to these medical devices, Indian therapeutic approaches and policy that impacts patients in Shimla, Himachal Pradesh. As caretakers have a critical part in the care for this disease, their lives were also considered in the case studies. It was found that ALS patients are not experiencing access to medical devices necessary for life because of physical …

Development Of An Outpatient Palliative Care Protocol To Monitor Fidelity In The Emergency Medicine Palliative Care Access Trial., Corita R. Grudzen, Abigail M. Schmucker, Deborah J. Shim, Aminat Ibikunle, Jeanne Cho, Frank R. Chung, Susan E. Cohen

Student Papers, Posters & Projects

Introduction: Palliative care is recommended for patients with life-limiting illnesses; however, there are few standardized protocols for outpatient palliative care visits. To address the paucity of data, this article aims to: (1) describe the elements of outpatient palliative care that are generalizable across clinical sites; (2) achieve consensus about standardized instruments used to assess domains within outpatient palliative care; and (3) develop a protocol and intervention checklist for palliative care clinicians to document outpatient visit elements that might not normally be recorded in the electronic heath record.

Methods: As part of a randomized control trial of nurse-led telephonic case management …

Impact Of Palliative Care Consultations For Patients Admitted To Maine Medical Center With Acute Exacerbations Of Copd, Benjamin Jarrett, Isabella Strumpf, Rebecca Hutchinson

MaineHealth Maine Medical Center

Background and purpose:

• COPD is the 3rd leading cause of death.

• Specialty Palliative Care (PC) is underutilized in COPD patients.

•PC involvement has been shown to improve quality of life and satisfaction with overall care.

• We sought to evaluate the association of receipt of palliative medicine consultation during an admission for acute exacerbation of COPD with a documented Goals of Care conversations and/or presence of an advanced directive and/or POLST.

What’S Happening To Our Patients In Their Final Year Of Life?, Teresa Letellier, Amy Haskins, Christina Holt

MaineHealth Maine Medical Center

We want to “die well” which includes:

• Effective symptom management

• Receiving care consistent with wishes Who achieves this, and how?

• Primary care physicians (PCPs) – Insufficient time and training

• Palliative care physicians – Better quality care and decreased health care cost in last years of life

• “Surprise Question” – “Would you be surprised if this patient dies in the next year?”

• To recognize our sickest patients and discuss goals of care and consult palliative care, if appropriate • “Advance care planning tab” – To record code status, advance directive, POLST forms, medical power of …

Northern New England Palliative Care Teleconsult Research Laboratory, Ava Daruvala, Rebecca N. Hutchinson, Eric Anderson, Paul Han

MaineHealth Maine Medical Center

Introduction:

• Palliative care (PC) is an approach that improves the quality of life of patients and their families.

• Delivery of PC via telehealth technology (tele-PC) has been proposed as a solution to increase access to PC in rural areas. • The feasibility, acceptability, and effectiveness of applying telehealth technology to PC remains unknown.

• The overarching purpose of the proposed study is to 1) evaluate the feasibility and acceptability of a tele-PC intervention for seriously ill patients, and 2) generate pilot data to better understand provider-patient communication during tele-PC consultations

Handout: Palliative Care Institute And Northwest Life Passages Coalition - Helpful Links, Palliative Care Institute, Western Washington University, Northwest Life Passages Coalition

Northwest Life Passages Coalition Documents

The Palliative Care Institute (PCI) at Western Washington University aims to help those who actively seek to live their lives to the fullest, with their pain and suffering alleviated, their fears and questions heard and addressed, and their relational, spiritual, and cultural needs met. PCI believes that the changes in serious illness and end of life care envisioned in the Northwest Life Passages Coalition Blueprint will occur through changes in training for clinical providers and also by activating our community.

The Whatcom Alliance for Health Advancement (WAHA) is a nonprofit organization based in Bellingham, Washington whose mission is to connect …

Single-Subject Designs And Practice-Based Research In Palliative Care: A Letter To The Editor., James Gerhart, Dennis J. Hand, Michael Hoerger, Sean O'Mahony

Department of Obstetrics and Gynecology Faculty Papers

No abstract provided.

A Nurse Navigator-Driven Program To Increase Palliative Care Referrals For Advanced Heart Failure Patients, Margaret Richter, Linda Desitter, Adam Mizgajski, Deborah Strohecker

Articles, Abstracts, and Reports

No abstract provided.

Emergency Medicine Palliative Care Access (Empalla): Preliminary Data From A Multi-Center Randomized Controlled Trial, Abigail M. Schmucker, Ba, Deborah J. Shim, Bs, Corita R. Grudzen, Md, Mshs, Jeanne Cho, Mph, Keith Goldfeld, Drph

Phase 1

Introduction: Emergency department (ED)-initiated palliative care has been shown to improve patient-centered outcomes in older adults with serious illnesses, but the optimal modality for providing such interventions is unknown. The EMPallA trial compares nurse-led, telephonic case management with specialty, outpatient palliative care on: 1) patient quality of life (QOL); 2) healthcare utilization; 3) loneliness and symptom burden; and 4) caregiver strain, QOL, and bereavement.

Objective: Summarize preliminary demographic and QOL data for the EMPallA cohort.

Methods: A pragmatic, parallel, two-arm randomized controlled trial is enrolling 1350 ED patients across 9 EDs over 3 years to compare the effectiveness of palliative …

Handout: Everyone Needs An Advance Directive! Not Everyone Needs A Polst!, Northwest Life Passages Coalition

Northwest Life Passages Coalition Documents

The Advance Directive and Physician Orders for Life Sustaining Treatments (POLST) are both important tools for documenting your wishes for care. They are each designed to accomplish specific goals - it is important to understand who they are intended for and what they do!

Effect Of Neoadjuvant Chemoradiation On Preoperative Pulmonary Physiology, Postoperative Respiratory Complications And Quality Of Life In Patients With Oesophageal Cancer, J. A. Elliott, L. O'Byrne, G. Foley, C. F. Murphy, Suzanne Doyle, S. King, E. M. Guinan, N. Ravi, V. Reynolds

Articles

Background: It remains controversial whether neoadjuvant chemoradiation (nCRT) for oesophageal cancer influences operative morbidity, in particular pulmonary, and quality of life. This study combined clinical outcome data with systematic evaluation of pulmonary physiology to determine the impact of nCRT on pulmonary physiology and clinical outcomes in locally advanced oesophageal cancer.

Methods: Consecutive patients treated between 2010 and 2016 were included. Three-dimensional conformal radiation was standard, with a lung dose–volume histogram of V20 less than 25 per cent, and total radiation between 40 and 41⋅4Gy. Forced expiratory volume in 1 s (FEV1), forced vital capacity (FVC) and diffusion capacity …

Search Strategy For "The Benefits, Burdens, And Risks Of Participation In Pediatric Palliative Care And End Of Life Research: A Systematic Review", Pamela S. Hinds, Vanessa N. Madrigal, Cynthia J. Bell, Cynthia M. Schmidt, Amy R. Newman, Kim Mooney-Doyle, Jessica L. Spruit, Tessie October, Christine A. Fortney, Melissa Kurtz Uveges, Kitty Montgomery, Katherine Patterson Kelly, Meaghann S. Weaver

Search Strategies

No abstract provided.