Unique and Universal Barriers: Hospice Care for Aging Adults with Intellectual Disability

2012 ◽  
Vol 117 (6) ◽  
pp. 509-532 ◽  
Author(s):  
Sandra L. Friedman ◽  
David T. Helm ◽  
Ashley C. Woodman
Keyword(s):  
Palliative Care ◽  
Intellectual Disability ◽  
Hospice Care ◽  
Collaborative Approach ◽  
Review Of The Literature ◽  
Age Related ◽  
Care Workers ◽  
Multiple Challenges ◽  
Aging Adults ◽  
Hospice And Palliative Care

Abstract As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.

scholarly journals 523. COVID-19 Preparedness in Hospice and Palliative Care

2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S328-S328
Author(s):  
Monika Pogorzelska-Maziarz ◽  
Jeannette Kates ◽  
Jingjing Shang ◽  
Angela M Gerolamo
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Group Discussion ◽  
Discussion Board ◽  
Community Group ◽  
Care Community ◽  
Care Services ◽  
Do It Yourself ◽  
Hospice And Palliative Care ◽  
The Impact

Abstract Background Due to the emergence of COVID-19 and resulting pandemic, there is an increased demand for palliative care and hospice care services. However, the impact of COVID-19 on the hospice and palliative agencies is unknown. Methods An electronic survey was disseminated via the Hospice & Palliative Nurses Association newsletter, posted to the Sigma Theta Tau Hospice and Palliative Care Community Group discussion board and advertised through social media from May 7–28, 2020. Summary statistics were computed. Results We collected 36 surveys representing all U.S. regions. Most respondents (78%) reported that their agency has cared for confirmed COVID-19 patients. Only half of agencies had access to laboratory facilities for surveillance and detection of the presence of outbreaks in both patients and staff (58%) and the ability to test patients and providers for COVID-19 (55%). Due to COVID-19, participants stated that the agency added new protocols regarding aerosol-generating procedures policies (58%), use of surface barriers (61%) and PPE usage (e.g. donning and doffing) in patient homes (56%). The majority (76%) reported that their agency required field clinicians to call ahead to ascertain COVID-19 exposure/symptoms before a home visit. More than half (58%) reported that their agency lacked supplies, including N95 respirators (45%), cleaning/disinfectant product (23%), alcohol based sanitizer (18%), eye protection (18%), gowns (18%), and surgical masks (14%). Overall, participants shared that field clinicians had to reuse (76%), extend (73%) or ration (30%) PPE supplies. Respondents reported that their agency accessed supplemental PPE through state/local resources (67%), private/community donations (67%), and do-it-yourself efforts (55%). One third (31%) reported that their agency was experiencing staffing shortages due to COVID-19; of these, 60% reported that shortages were due to staff infected with/quarantined due to COVID-19. Conclusion Our findings suggest that COVID-19 has presented significant challenges for palliative care and hospice agencies as they provide care to patients and families at an unprecedented rate. Disclosures All Authors: No reported disclosures

scholarly journals INNOVATIVE STRATEGIES TO SUPPORT OLDER ADULTS AND THEIR FAMILIES IN HOSPICE AND PALLIATIVE CARE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S199-S199
Author(s):  
George Demiris ◽  
Karen Hirschman
Keyword(s):  
Older Adults ◽  
Palliative Care ◽  
Hospice Care ◽  
Geographic Distance ◽  
Smart Phone ◽  
Evidence Base ◽  
Lessons Learned ◽  
Ethical Challenges ◽  
Rural Settings ◽  
Hospice And Palliative Care

Abstract In order to better support older adults with life-limiting illness and their families, many initiatives utilize information technology and other innovative platforms to increase access to supportive services and bridge geographic distance. Such technologies cover a broad range of systems ranging from smart phone applications to wearables and traditional telehealth platforms. There is a growing evidence base for such interventions but technical, clinical and ethical challenges remain when utilizing technology in the context of hospice and palliative care especially for older adults, including the concerns for caregiver burden, privacy, security, confidentiality, obtrusiveness and accessibility. In this symposium we provide an overview of innovative tools available for interventions in palliative and hospice care designed for patients and/or family caregivers in urban and rural settings. We provide lessons learned from three NIH funded studies testing different technology-based interventions in various settings including home hospice and outpatient palliative care. Discussion will follow focused on the clinical, ethical and practical challenges of innovation and the unique considerations for technology-mediated intervention design in a variety of palliative and hospice care settings. This symposium aims to provide: 1. an overview of existing technology-based interventions for older adults and their families in palliative care and hospice 2. evidence-based recommendations resulting from clinical trials in urban and rural settings for the design and implementation of innovative tools in hospice and palliative care 3. a discussion of challenges and opportunities for the use of technology to support older adults and their families

Palliative and Hospice Care: Educational Needs of Inpatient Registered Nurses

2016 ◽  
Vol 22 (2) ◽  
pp. 114-120 ◽  
Author(s):  
Jennifer L. Ashley ◽  
Tracy K. Fasolino
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Acute Care ◽  
Formal Education ◽  
Care Setting ◽  
Hospice Care ◽  
Acute Care Setting ◽  
Life Threatening ◽  
Hospice And Palliative Care

Hospice and palliative care aim to improve the quality of life for patients and families impacted by chronic, serious, and life-threatening illnesses. Patients and families benefit from earlier integration of palliative care and seamless transitions to hospice care. Nurses are an integral part of the care team, and their understanding of these services is critical. However, many nurses do not receive formal education in hospice and palliative care. This leads to lack of skills that nurses need to provide and discuss hospice and palliative care across care settings. Nurses in an acute care setting of a large health system were invited to participate in a survey, Attitudes Towards Care at the End-of-Life. The results of this survey revealed that nurses believe that patients and families need to be communicated with honestly regarding their disease, but nurses lack the knowledge of how to facilitate these discussions. Another key finding is that nurses feel less confident with non-pharmacologic interventions to relieve patients’ suffering. Education is urgently needed in these areas.

The economic challenges of palliative medicine

2015 ◽  
Author(s):  
Thomas J. Smith ◽  
J. Brian Cassel
Keyword(s):  
Palliative Care ◽  
Lower Cost ◽  
Hospice Care ◽  
Cost Minimization ◽  
Cost Benefit ◽  
Cost Utility ◽  
Utility Analysis ◽  
New Directions ◽  
Hospice And Palliative Care ◽  
Benefit Cost

The compelling reasons for palliative care continue to be better symptom management, better advanced care planning and medically appropriate goal setting, and transitions to hospice care. Other new-found compelling reasons include better survival with hospice care, better survival with concurrent palliative care, and lower cost to hospitals and government and insurance funders. In studies to date, hospice and palliative care have been associated with equal or better survival and equal or lower cost. This chapter defines the various types of cost and clinical studies (including cost minimization, cost-effectiveness, cost utility analysis, cost-benefit, cost avoidance) and discusses the available data about the economic challenges of palliative care, how to apply the available data, how to collect and present some useful and useable data, and new directions for research.

Volunteering in hospice and palliative care in Germany

2018 ◽  
Author(s):  
Michaela Hesse ◽  
Lukas Radbruch
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Hospice Care ◽  
Care Service ◽  
Health Care Service ◽  
Care Providers ◽  
Specialist Services ◽  
Patient Groups ◽  
Hospice And Palliative Care

German hospice care developed as a civil society movement in which volunteers were essential from the beginning. Palliative care was, however, led by a few pioneer physicians and started independently from hospices. This separate development is still visible with a clear distinction between palliative care units and inpatient hospices. Over the last two decades these two areas of care have moved more into the regular health care service. As a result volunteer services are increasingly subject to regulations. This also means that there is an increasing amount of competition and economic pressure. Developing trust and high transparency in the local and regional palliative care networks, and open and bilateral collaboration of specialist services with general practitioners (GPs) and other health care providers on the basic palliative care level are prerequisites of integrated palliative care. Ongoing development leads to changes in the patient groups that receive palliative care.

scholarly journals Cultural and Religious Diversity in Hospice and Palliative Care: A Qualitative Cross-Country Comparative Analysis of the Challenges of Health-Care Professionals

2018 ◽  
Vol 81 (4) ◽  
pp. 648-669 ◽  
Author(s):  
Panagiotis Pentaris ◽  
Louise L. Thomsen
Keyword(s):  
Palliative Care ◽  
Comparative Analysis ◽  
Health Care Professionals ◽  
Hospice Care ◽  
Current Knowledge ◽  
Qualitative Comparative Analysis ◽  
Strong Relationship ◽  
Important Change ◽  
Context Specific ◽  
Hospice And Palliative Care

Research has abundantly demonstrated a strong relationship between culture, religion, and the experiences of death, dying, and bereavement. Consequently, cultural competence and a religiously sensitive practice have become highly relevant to social policies and professional practice. However, our current knowledge of culturally competent and religiously sensitive end-of-life care is primarily context specific, with little space for generalizability. This article reports on findings from a qualitative comparative analysis of two nation-specific studies that examined religious literacy and cultural competency, respectively, among palliative-care professionals, drawing on similarities and attempting to identify further applicability of nation-centered knowledge. The study recognized six practice-based approaches in palliative and hospice care, when responding to cultural and religious or nonreligious identities of services users. These approaches intersect with each other via three organizational layers identified in the study: foundations, culture, and professionals. Each identified practice-based approach seems to be incomplete when working with individuals for whom religion, belief, and cultural identities are important. Change in practice is possible if all three organizational layers are considered simultaneously, while further research will shed more light about the benefits and challenges of each approach.

scholarly journals Situation, possibilities and difficulties of the hospice and palliative care in Hungary

2014 ◽  
Vol 155 (38) ◽  
pp. 1504-1509 ◽  
Author(s):  
Katalin Hegedűs ◽  
Miklós Lukács ◽  
Judit Schaffer ◽  
Ágnes Csikós
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Service Providers ◽  
Death And Dying ◽  
National Data ◽  
Terminally Ill Cancer Patients ◽  
Lack Of Information ◽  
Institutional Supply ◽  
Hospice And Palliative Care ◽  
Hospice Palliative Care

Hospice-palliative care has existed in Hungary for more than 20 years but physicians know very little about it. The objective of the study is to give detailed practical information about the possibilities and the reasonability of hospice care and the process of how to have access to it. The authors review and analyze the database of the national Hospice-Palliative Association database to provide most recent national data on hospice-palliative care. In addition, legal, financial and educational issues are also discussed. At present there are 90 active hospice providers in Hungary, which provide service for more than 8000 terminally ill cancer patients. According to WHO recommendations there would be a need for much more service providers, institutional supply and more beds. There are also problems concerning the attitude and, therefore, patients are admitted into hospice care too late. Hospice care is often confused with chronic or nursing care due to lack of information. The situation may be improved with proper forms of education such as palliative licence and compulsory, 40-hour palliative training for residents. The authors conclude that a broad dissemination of data may help to overcome misbeliefs concerning hospice and raise awareness concerning death and dying. Orv. Hetil., 2014, 155(38), 1504–1509.

scholarly journals Overview of Hospice and Palliative Care in Oncology

1996 ◽  
Vol 3 (3) ◽  
pp. 197-203 ◽  
Author(s):  
Ronald S. Schonwetter
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Cancer Control ◽  
Alternative Health ◽  
Alternative Health Care ◽  
Hospice Movement ◽  
American Medicine ◽  
Accepted Part ◽  
Hospice And Palliative Care ◽  
Hospice Palliative Care

Background The concept of palliative care in oncology has not yet reached the forefront of American medicine, and hospice care may be underused. Methods Data on increasing needs for palliative care and the development of the hospice movement are compared with practice behavior patterns of physicians in regard to palliative care. Results Hospice/palliative care has grown from an alternative health care movement to an accepted part of the American health field. Limitations of hospice/palliative care include health professionals’ discomfort with care of the terminally ill as well as difficulties in predicting limited prognoses that may hinder access to such care. Conclusions Hospice/palliative care principles should be integrated into other elements of cancer control to ensure comprehensive care for all cancer patients.

scholarly journals Parents' Voices Supporting Music Therapy within Pediatric Palliative Care

2005 ◽  
Vol 5 (3) ◽  
Author(s):  
Kathryn Lindenfelser
Keyword(s):  
Palliative Care ◽  
Music Therapy ◽  
End Of Life ◽  
Hospice Care ◽  
Terminally Ill ◽  
Children And Families ◽  
Therapy Services ◽  
Hospice And Palliative Care ◽  
The University ◽  
Parents Experiences

It has been my experience that parents are willing and open to express their voices to promote and advocate for music therapy services for their terminally ill children. By listening to parents' voices when providing care for terminally ill children, much can be done to ease the suffering of children and families at the end of life (Widger & Wilkins, 2004). My music therapy masters research at the University of Melbourne with Dr. Katrina McFerran will investigate bereaved parents' experiences of music therapy with their terminally ill child. This inquiry unfolded through my music therapy work with several children and families within hospice and palliative care. Parents have reflected that music therapy was a vital component in their child's care at the end of life. As one mom commented, "I don't care what anyone says, it has made a world of a difference." In order to further explore parents' experiences of music therapy, in-depth interviews will be conducted and transcripts will be analyzed using phenomenological strategies. It has been reported that parents find the interview process helpful in working through grief. They have also reported feeling an overall eagerness to share their child's story in order to provide input that might assist other families in the future (Widger & Wilkins, 2004). This article will describe pediatric palliative and hospice care, discuss parents as advocates for their terminally ill children, portray the use of music therapy within pediatrics, and share an example of music therapy with Jack.

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