Huntington’s Disease: A Caring Approach to the End of Life

2008 ◽  
Vol 9 (2) ◽  
pp. 75-81 ◽  
Author(s):  
Joseph Klager ◽  
Ayana Duckett ◽  
Susan Sandler ◽  
Carol Moskowitz
Keyword(s):  
Decision Making ◽  
Nursing Home ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Disease Progression ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Life Care ◽  
Home Setting

This article describes the challenges of end-of-life care encountered in a specialized long-term care program for people with Huntington’s disease (HD). The Promoting Excellence in End-of-Life Care Huntington’s Disease Workgroup defines the initiation of palliative care as the point at which independent living is no longer possible. Mobility and lifestyle accommodations for people in the nursing home setting with an early-onset disease are a major feature of this program. The primary end-of-life considerations are advance directives decision-making and anticipating end-stage care needs. Disease progression, denial, family conflict, and clinician blind-spots may impede the development of timely advance directives. The unpredictable and idiosyncratic nature of disease progression impacts decision making for end-of-life care settings and approaches: hospitalization, nursing home stay, and in-house hospice care are the available options. The Workgroup has delineated several priority areas for patient care in HD: autonomy; dignity; meaningful social interaction; communication; comfort; safety and order; spirituality; enjoyment, entertainment, and well-being nutrition; and functional competence. This review also includes a description of the program features in each of these areas.

scholarly journals An Individual Housing-Based Socioeconomic Status Measure Predicts Advance Care Planning and Nursing Home Utilization

2018 ◽  
Vol 36 (5) ◽  
pp. 362-369 ◽  
Author(s):  
Amelia Barwise ◽  
Young J. Juhn ◽  
Chung-Il Wi ◽  
Paul Novotny ◽  
Carolina Jaramillo ◽  
...  
Keyword(s):  
Decision Making ◽  
Socioeconomic Status ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Composite Index ◽  
Life Care ◽  
Individual Housing ◽  
Lower Likelihood ◽  
Multiple Variables

Background: Socioeconomic status (SES) is an important determinant of disparities in health care and may play a role in end-of-life care and decision-making. The SES is difficult to retrospectively abstract from current electronic medical records and data sets. Objective: Using a validated SES measuring tool derived from home address, the HOUsing-based SocioEconomic Status index, termed HOUSES we wanted to determine whether SES is associated with differences in end-of-life care and decision-making. Design/Setting/Participants: This cross-sectional study utilized a cohort of Olmsted County adult residents admitted to 7 intensive care units (ICUs) at Mayo Rochester between June 1, 2011, and May 31, 2014. Measurements: Multiple variables that reflect decision-making and care at end of life and during critical illness were evaluated, including presence of advance directives and discharge disposition. The SES was measured by individual housing-based SES index (HOUSES index; a composite index derived from real property as a standardized z-score) at the date of admission to the ICU which was then divided into 4 quartiles. The greater HOUSES, the higher SES, outcomes were adjusted for age, 24-hour Acute Physiology and Chronic Health Evaluation III score, sex, race/ethnicity, and insurance. Results: Among the eligible 4134 participants, the addresses of 3393 (82%) were successfully geocoded and formulated into HOUSES. The adjusted odds ratios comparing HOUSES 1 versus 2, 3, and 4 demonstrated lower likelihood of advance directives −0.77(95% CI: 0.63-0.93) and lower likelihood of discharge to home −0.60(95% CI: 1.0.5-0.72). Conclusion: Lower SES, derived from a composite index of housing attributes, was associated with lower rates of advance directives and lower likelihood of discharge to home.

scholarly journals Critical nursing and health care aide behaviors in care of the nursing home resident dying with dementia

BMC Nursing ◽  
2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Genevieve N. Thompson ◽  
Susan E. McClement
Keyword(s):  
Health Care ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Structured Interviews ◽  
Care Needs ◽  
Two Phase ◽  
Home Setting ◽  
Expert Nurses

Abstract Background With the aging of the population, dying with dementia will become one of the most common ways in which older adults will end their final years of life, particularly for those living in a nursing home. Though individuals living with dementia have complex care needs and would benefit from a palliative approach to care, they have traditionally not been recipients of such care. An important aspect of determining quality in end-of-life care is the identification of expert practices, processes or behaviors that may help achieve this care. However, for those living with dementia in nursing homes, we have a limited understanding of how to best support expert end of life care. To redress this gap in knowledge, the purpose of this study was to examine and describe expert care of the individual with dementia approaching death from the perspective of nurses and health care aides (HCAs) identified by their peers as having special expertise in caring for this population. Methods A qualitative research design known as Interpretative Description was used to conduct the study. Expert nurses and HCAs were identified through a two-phase nomination process. Individual semi-structured interviews were conducted with consenting participants. Data were analyzed using constant comparative analysis to determine the key critical behaviors. Results Analysis of data collected from expert nurses (n = 8) and HCAs (n = 7) revealed six critical behaviors when caring for residents dying with dementia. All nurses and HCAs unanimously endorsed that the overarching goal of care is similar for all residents who are actively dying; to achieve comfort. The six critical behaviors in caring for residents dying with dementia included: 1) recognizing and responding to changes in a resident’s pattern of behavior; 2) attending to the person; 3) working with the family; 4) engaging with others; 5) responding after the death has occurred; and 6) having a positive attitude toward care of the dying. Conclusions The critical behaviors described by nurses and HCAs in this study provides emerging evidence of best practices in care of those with dementia and their families, particularly near the end of life within the nursing home setting.

The nursing management required to provide effective end-of-life care in a care home setting: a case study

2021 ◽  
Vol 23 (2) ◽  
pp. 1-7
Author(s):  
Simona Hickey ◽  
Mary Williams
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
Symptom Management ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Care Home ◽  
Life Care ◽  
Home Setting ◽  
Nursing Home Setting

Background: This case study is a practical experience example from a nursing home setting. It will describe how a holistic approach to care, provided to a resident living with dementia at end of life, ensured a peaceful death. Aims: The importance of advance care planning and effective pain and symptom management in end-of-life care will be explored. The psychosocial issues experienced by the resident and their family and any ethical issues associated with the delivery of care will be addressed. The factors and challenges that need to be overcome in order to ensure effective pain and symptom management for the dying patient, particularly in a nursing home setting, are discussed. Finally, this article will make recommendations for future practice. Methods: This is a case study based on an author's experience while working in a nursing home setting. Findings: Challenges associated with end-of-life care have been identified and recommendations have been made.

scholarly journals Advance Directives and End-of-Life Care among Nursing Home Residents Receiving Maintenance Dialysis

2017 ◽  
Vol 12 (3) ◽  
pp. 435-442 ◽  
Author(s):  
Manjula Kurella Tamura ◽  
Maria E. Montez-Rath ◽  
Yoshio N. Hall ◽  
Ronit Katz ◽  
Ann M. O’Hare
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Life Care ◽  
Maintenance Dialysis

scholarly journals Advance Directives And Nursing Home Stays Associated With Less Aggressive End-Of-Life Care For Patients With Severe Dementia

2014 ◽  
Vol 33 (4) ◽  
pp. 667-674 ◽  
Author(s):  
Lauren H. Nicholas ◽  
Julie P.W. Bynum ◽  
Theodore J. Iwashyna ◽  
David R. Weir ◽  
Kenneth M. Langa
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Life Care ◽  
Severe Dementia

scholarly journals COMPETENCY BASED TRAINING IN THE NURSING HOME SETTING: PROMOTING QUALITY END-OF-LIFE CARE

2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A15.1-A15
Author(s):  
Dorry McLaughlin ◽  
Felicity Hasson ◽  
Sue Foster ◽  
Noleen McCorry ◽  
George Kernohan ◽  
...  
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Home Setting ◽  
Nursing Home Setting ◽  
Competency Based

End of Life Care in the Nursing Home Setting

2010 ◽  
Vol 11 (3) ◽  
pp. B10
Author(s):  
Petra Flock ◽  
Petra Flock ◽  
Jill M. Terrien
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Home Setting ◽  
Nursing Home Setting

The known unknowns of assisted hydration at the end of life

2021 ◽  
Vol 26 (6) ◽  
pp. 284-285
Author(s):  
Arjun Kingdon ◽  
Anna Spathis ◽  
Ben Bowers ◽  
Stephen Barclay
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Shared Decision ◽  
Life Care ◽  
High Quality ◽  
Home Setting ◽  
Known Unknowns ◽  
The Impact

Much is unknown about assisted hydration at the end of life: why rates of usage vary so highly between institutions, cultures and countries, what beneficial or burdensome effects this treatment has, whether there is a place for subcutaneous hydration in the home setting, and how best to communicate about this difficult topic with dying people and their families. In light of a recently published systematic review concerning the impact of assisted hydration at the end of life, this article explores these questions and related issues, concluding that individualisation and shared decision-making are essential aspects of high-quality end-of-life care.

Sign in / Sign up

Export Citation Format

Share Document