Empowering Residents and Families for Care Decisions at End of Life

Author(s):  
Eva L. Barnett ◽  
Susan Reese

Emphasis on client‐centred care is the philosophy for most health care institutions. Long‐term care nursing homes have adopted this philosophy as well, with added emphasis on quality End‐of‐Life Care. Medical advancements have made End‐of‐Life care more complex and individuals and families are often asked to make crucial care decisions in the midst of crisis for their loved ones that may not be in accordance with the actual wishes of their loved ones.  Fairmount Nursing Home in Glenburnie has been a leader in their expertise in client centered care. This setting provided a welcoming environment for two of the Queen’s 4 th year nursing students to complete a practicum in Community Health Promotion. Our goal was to increase quality of care at End‐of‐Life by stimulating conversations around advanced decision‐ making. The focus was on expanding the knowledge of residents and their families and Substitute Decision Makers and thereby prompting thoughts about discussion before acute illness or crisis. A social assessment and literature search revealed that everyone has “a story to tell” about a personal End‐of‐Life experience. Through the development of a toolkit, reminders in the Fairmount monthly newsletter to advise readers of resources, and a presentation of information and resources at“Family Night”, we intended to encourage earlier important and focused conversations between residents, families and staff. We found that the information we presented promoted both discussion and questions regarding End‐of‐ Life. Strategic work must continue in order to assist people of all ages and stages of life to talk about their values and wishes before a health crisis intervenes and the opportunity for thoughtful choice is lost.

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.


2013 ◽  
Vol 16 (10) ◽  
pp. 1268-1274 ◽  
Author(s):  
Jenny Lee ◽  
Joanna Cheng ◽  
Kar-ming Au ◽  
Fannie Yeung ◽  
Mei-tak Leung ◽  
...  

2011 ◽  
Vol 21 (4) ◽  
pp. 671-684 ◽  
Author(s):  
Mirjam C. van Soest-Poortvliet ◽  
Jenny T. van der Steen ◽  
Sheryl Zimmerman ◽  
Lauren W. Cohen ◽  
Maartje. S. Klapwijk ◽  
...  

Author(s):  
Danni Collingridge Moore ◽  
Sheila Payne ◽  
Thomas Keegan ◽  
Luc Deliens ◽  
Tinne Smets ◽  
...  

Long term care facilities (LTCFs) are increasingly a place of care at end of life in Europe. Longer residence in an LTCF prior to death has been associated with higher indicators of end of life care; however, the relationship has not been fully explored. The purpose of this analysis is to explore associations between length of stay and end of life care. The analysis used data collected in the Palliative Care for Older People in care and nursing homes in Europe (PACE) study, a cross-sectional mortality follow-back survey of LTCF residents who died within a retrospective 3-month period, conducted in Belgium, England, Finland, Italy, the Netherlands and Poland. Primary outcomes were quality of care in the last month of life, comfort in the last week of life, contact with health services in the last month of life, presence of advance directives and consensus in care. Longer lengths of stay were associated with higher scores of quality of care in the last month of life and comfort in the last week of life. Longer stay residents were more likely to have advance directives in place and have a lasting power of attorney for personal welfare. Further research is needed to explore the underlying reasons for this trend, and how good quality end of life care can be provided to all LTCF residents.


2017 ◽  
Vol 11 (3) ◽  
pp. 207-215 ◽  
Author(s):  
Ryo Odachi ◽  
Tomoko Tamaki ◽  
Mikiko Ito ◽  
Taketoshi Okita ◽  
Yuri Kitamura ◽  
...  

Author(s):  
Jesse A. Soodalter ◽  
Yael Schenker

This chapter summarizes Singer and colleagues’ 1999 “Quality End-of-Life Care: Patients’ Perspectives,” which investigates elements of quality end-of-life (EOL) care from patients’ perspectives. The study uses content analysis of previously conducted interviews with 126 dialysis and HIV patients and long-term care residents to identify five domains of quality EOL care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. The authors compare these with three other, non-patient-derived taxonomies, finding the study’s domains to be simpler and more specific, less conceptually driven (e.g., “processes of care”), and more outcome-focused. This study pioneered patient-centered research into quality of EOL care, which has since expanded to many other populations


2013 ◽  
Vol 14 (3) ◽  
pp. 179-186 ◽  
Author(s):  
Mirjam C. van Soest-Poortvliet ◽  
Jenny T. van der Steen ◽  
Sheryl Zimmerman ◽  
Lauren W. Cohen ◽  
David Reed ◽  
...  

2005 ◽  
Vol 33 (2) ◽  
pp. 294-309 ◽  
Author(s):  
Diane E. Hoffmann ◽  
Anita J. Tarzian

The quality of end-of-life care in this country is often poor. There is abundant literature indicating that dying individuals do not receive adequate pain medication or palliative care, are tethered to machines and tubes in a way that challenges their dignity and autonomy, and are not helped to deal with the emotional grief and psychological angst that may accompany the dying process. While this is true for individuals in many settings, it seems to be especially true for individuals in nursing homes. This is somewhat puzzling given that (1) considerable resources have been devoted to bringing public attention to this problem, (2) we have the knowledge and expertise to provide such care, and (3) we have a government-financed benefit that covers this type of care - the Medicare hospice benefit (MHB).While utilization of hospice care has increased during the last decade, there is considerable evidence that hospice care remains underutilized particularly in the long term care setting.


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