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Palliative caregiver

Marian Krawczyk, Richard Sawatzky, Kara Schick-Makaroff, Kelli Stajduhar, Joakim Öhlen, Sheryl Reimer-Kirkham, Esther Mercedes Laforest, Robin Cohen
This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care...
March 1, 2018: Qualitative Health Research
Kristi Soileau, Nanette Elster
The hospice philosophy embraces palliative care for the terminally ill, for whom quality of life is the central focus of comfort care management. Often, caregivers hesitate or simply do not elect to extend oral care for patients nearing the end of life, due to difficulties encountered in patient compliance, a sense of futility in doing so, staff time constraints in prioritizing care, underfunding, or a lack of education as to how and why such care should be delivered to the hospice patient. This article aims to show physiological and psychosocial reasons why the hospice patient has a need for properly and regularly implemented oral care and why dental professionals have an ethical responsibility to address the current void that exists in hospice-centered oral care...
January 1, 2018: Journal of Palliative Care
John W Wax, Amy W An, Nicole Kosier, Timothy E Quill
Voluntary stopping of eating and drinking (VSED) is a deliberate, self-initiated attempt to hasten death in the setting of suffering refractory to optimal palliative interventions or prolonged dying that a person finds intolerable. Individuals who consider VSED tend to be older, have a serious but not always imminently terminal illness, place a high value on independence, and have significant illness burden. VSED can theoretically be performed independent of clinician assistance and therefore avoids many of the ethical and legal concerns associated with physician-assisted dying or other palliative measures of last resort, However, VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers, so VSED is best supervised by an experienced, well-informed clinician who can provide appropriate pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support...
March 2018: Journal of the American Geriatrics Society
Kathleen Oare Lindell, Mehdi Nouraie, Melinda J Klesen, Sara Klein, Kevin F Gibson, Daniel J Kass, Margaret Quinn Rosenzweig
Introduction: Idiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease affects approximately 128 000 newly diagnosed individuals in the USA annually. IPF, a disease of ageing associated with intense medical and financial burden, is expected to grow in incidence globally. Median survival from diagnosis is 3.8 years, and many of these patients succumb to a rapid death within 6 months. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses...
2018: BMJ Open Respiratory Research
Karen Parsons, Alice Gaudine, Michelle Swab
BACKGROUND: Most developed countries throughout the world are experiencing an aging nursing workforce as their population ages. Older nurses often experience different challenges then their younger nurse counterparts. With the increase in older nurses relative to younger nurses potentially available to work in hospitals, it is important to understand the experience of older nurses on high paced hospital nursing units. This understanding will lend knowledge to ways of lessening the loss of these highly skilled experienced workers and improve patient outcomes...
March 2018: JBI Database of Systematic Reviews and Implementation Reports
Mark Hofmeister, Ally Memedovich, Laura E Dowsett, Laura Sevick, Tamara McCarron, Eldon Spackman, Tania Stafinski, Devidas Menon, Tom Noseworthy, Fiona Clement
BACKGROUND: The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work. METHODS: A scoping review was completed using PRISMA guidelines...
March 7, 2018: BMC Palliative Care
Marie Nordström, Peter Strang
OBJECTIVE: At the initiative of Stockholm County Council, a survey was performed by an independent investigator to evaluate satisfaction among patients and their families with the advanced palliative home care teams in the county of Stockholm. The survey was performed in 2010 and compiled in 2011. The aim was to evaluate the impressions of patients and their families of the support given by the palliative home care teams in the Stockholm area and to evaluate the management of symptom control, availability, continuity, confidence, and quality of communication...
January 1, 2018: Journal of Palliative Care
Stephanie Stiel, Maria Heckel, Kim Nikola Wendt, Martin Weber, Christoph Ostgathe
BACKGROUND: Patient-reported outcomes are usually considered to be the gold standard assessment. However, for the assessment of quality of dying and death, ratings of informal caregivers (ICGs) or health-care professionals (HCPs) must be considered for ethical and methodological reasons. This article aims to present results of ICGs' and HCPs' estimates of the questionnaire, quality of dying and death (QoDD) on patients who died in PCUs and to compare the level of agreement of both ratings/raters...
January 1, 2018: American Journal of Hospice & Palliative Care
Lauren R Bangerter, Joan M Griffin, Arielle Eagan, Manish Mishra, Angela Lunde, Véronique Roger, Albert Mulley, Jon Lotherington
Objective: In December 2016, 66 health leaders from 14 countries convened at the Salzburg Global Seminar (SGS) to engage in cross-cultural and collaborative discussions centered on 'Rethinking Care Toward the End of Life'. Conversations focused on global perspectives on death and dying, challenges experienced by researchers, physicians, patients and family caregivers. This paper summarizes key findings and recommendations from SGS. Design: Featured sessions focused on critical issues of end of life care led by key stakeholders, physicians, researchers, and other global leaders in palliative care...
March 2, 2018: International Journal for Quality in Health Care
Marilyn Kendall, Eileen Cowey, Gillian Mead, Mark Barber, Christine McAlpine, David J Stott, Kirsty Boyd, Scott A Murray
BACKGROUND: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care. METHODS: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year...
March 5, 2018: CMAJ: Canadian Medical Association Journal, Journal de L'Association Medicale Canadienne
Lauren J Breen, Samar M Aoun, Moira O'Connor, Denise Howting, Georgia K B Halkett
CONTEXT: Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasise the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers' perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes. OBJECTIVES: The objective was to explore family caregivers' preparations for death...
February 27, 2018: Journal of Pain and Symptom Management
Vidya Viswanath, Gayatri Palat, Srini Chary, Ann Broderick
Palliative care providers across India lobbied to gain access to methadone for pain relief and this has finally been achieved. Palliative care activists will count on the numerous strengths for introducing methadone in India, including the various national and state government initiatives that have been introduced recognizing the importance of palliative care as a specialty in addition to improving opioid accessibility and training. Adding to the support are the Non-Governmental Organizations (NGOs), the medical fraternity and the international interactive and innovative programs such as the Project Extension for Community Health Outcome...
January 2018: Indian Journal of Palliative Care
Laura P Gelfman, Marie Bakitas, Lynne Warner Stevenson, James N Kirkpatrick, Nathan E Goldstein
BACKGROUND: Heart failure (HF) is a chronic progressive illness associated with physical and psychological burdens, high morbidity, mortality, and healthcare utilization. Palliative care is interdisciplinary care that aims to relieve suffering and improve quality of life for persons with serious illness and their families. It is offered simultaneously with disease-oriented care, unlike hospice or end-of-life care. Despite the demonstrated benefits of palliative care in other populations, evidence for palliative care in the HF population is limited...
June 2017: Journal of Palliative Medicine
Gülay Ateş, Anne Frederieke Ebenau, Csilla Busa, Ágnes Csikos, Jeroen Hasselaar, Birgit Jaspers, Johan Menten, Sheila Payne, Karen Van Beek, Sandra Varey, Marieke Groot, Lukas Radbruch
BACKGROUND: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services...
March 1, 2018: BMC Palliative Care
Isabel Pinheiro, Dilshad Jaff
Refugees are often afflicted with health conditions that require long-term, specialized and continuous care services that are costly and difficult to secure in host countries and camp settings. This study interviewed 21 Syrian refugees in Jordan with life-limiting conditions such as cancer, diabetes, chronic disability and renal failure, and 4 caregivers caring for refugee children with similar conditions. This study found that patients in refugee camps and communities would benefit from receiving palliative care services that are often either unavailable or inaccessible...
February 27, 2018: Medicine, Conflict, and Survival
J Nicholas Dionne-Odom, Richard Taylor, Gabrielle Rocque, Carol Chambless, Thomas Ramsey, Andres Azuero, Nataliya Ivankova, Michelle Y Martin, Marie A Bakitas
CONTEXT: There is a scarcity of early palliative care interventions to support family caregivers of persons with advanced cancer living in the rural Southern U.S.. OBJECTIVE: Adapt the content, format, and delivery of a six session, palliative care, telehealth intervention with monthly follow-up for rural family caregivers to enhance their own self-care and caregiving skills. METHODS: Qualitative formative evaluation consisting of one-on-one, semi-structured interviews with rural-dwelling persons with metastatic cancer (n=18), their primary family caregiver (n=20), and lay patient navigators (n=26) were conducted to elicit feedback on a family caregiver intervention outline based on published evidence-based interventions...
February 20, 2018: Journal of Pain and Symptom Management
Shelli L Feder, David Collett, Samantha Conley, Dena Schulman-Green, Tikva Meron, Nathan Cherny
BACKGROUND: In Israel, palliative care (PC) services are limited. This study assessed Israeli nurses' perceived competencies and educational needs in providing PC. DESIGN: Online administration of the End-of-Life Professional Caregiver Survey (EPCS). SETTING/SUBJECTS: Oncology and PC nurses were identified through the Israel Ministry of Health and Oncology Nurses' Society. MEASUREMENTS: Demographic and practice data were analysed using analysis of variance tests to determine differences between nurse characteristics by EPCS domains...
February 2, 2018: International Journal of Palliative Nursing
Nasreen Lalani, Wendy Duggleby, Joanne Olson
BACKGROUND: Family caregivers experience spiritual and existential concerns while caring for their terminally ill family members. AIM: To evaluate and synthesise studies on spirituality among family caregivers in palliative care. DESIGN: An integrative literature review of peer-reviewed articles published between 2000 and 2016. SAMPLE: Participants were family caregivers (parents, spouses, relatives or friends) caring for an adult (age>18 years) family member with a terminal illness in a palliative care setting...
February 2, 2018: International Journal of Palliative Nursing
Matthias Seibl-Leven, Christian von Reeken, Roland Goldbrunner, Stefan Grau, Maximilian Ingolf Ruge, Norbert Galldiks, Veronika Dunkl, Martin Kocher, Raymond Voltz, Heidrun Golla
The implementation of self-reported outcome measurements into clinical routine was tested to help facilitate early access to palliative care (PC) for glioblastoma (GBM)-patients. Measures detail PC symptoms and concerns and caregiver burden. Between January 2014 and December 2016, a total of 337 GBM-patients were discussed during meetings of the neuro-oncology tumor board to examine further treatment options. Each patient, along with their caregivers, was requested to participate in self-assessment using the palliative outcome scale (POS) and the Zarit Burden Interview (ZBI)...
February 20, 2018: Journal of Neuro-oncology
Christina L Vaughan, Benzi M Kluger
PURPOSE OF REVIEW: While care for patients with movement disorders has traditionally focused on motor symptoms, there is increasing evidence that optimal care for these disorders is more complex both in terms of the spectrum of symptoms experienced by patients (e.g., pain, depression) and the multidimensional needs of patients and their families. Palliative care is an approach to the care of patients and families affected by serious illnesses that seeks to relieve suffering by addressing complex medical symptoms, psychosocial issues, spiritual well-being, and goals of care...
February 21, 2018: Current Treatment Options in Neurology
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