Prevalence and Predictors of Willingness to Make Advance Directives among Macao Chinese

While advance directives (ADs) are considered to be part of government’s healthcare agenda, there has not been any public consultation for legislation, nor investigation regarding the public’s views about ADs in the Chinese culture of Macao. The current study explored the Macao Chinese people’s willingness to make ADs. Data were collected from 724 residents aged 18 years and above. Results showed that 533 respondents (73.6%) claimed that they were willing to complete an AD if the document was recognized legally. The experience of caring for relatives or friends with terminal illnesses, palliative care as the preferred end-of-life treatment option, and scoring higher in the Hospice Care Attitude Scale were the predictors of willingness to make ADs. Results of the study suggested that there was a relatively high number of people who would consider setting up ADs. Our study recommends that healthcare professionals should equip themselves to raise ADs-related discussions with patients. Moreover, the Macao Government is responsible for facilitating the introduction and implementation of ADs in order to improve overall end-of-life care quality in Macao.

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CAREGIVER BURDEN, BENEFIT, AND PERCEPTIONS OF END-OF-LIFE CARE QUALITY

Innovation in Aging ◽

10.1093/geroni/igz038.2472 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S668-S668

Author(s):

Elizabeth A Luth ◽

Teja Pristavec

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Hospice Care ◽

Quality Care ◽

Care Quality ◽

National Study ◽

Life Care ◽

Care Needs ◽

Caregiving Burden ◽

High Burden

Abstract End-of-life care quality (EOLCQ) gauges our success in providing quality care to dying individuals. EOLQC measures rely on reports from bereaved family members who provide care for dying loved ones, but analyses seldom account for how caregivers’ experiences influence their EOLCQ perceptions. Caregivers frequently experience burden, which is linked to poor health outcomes and may negatively bias EOLCQ reports. Individuals may also perceive caregiving benefits that can offset deleterious burden effects, but potentially encourage overly positive EOLCQ perceptions. This paper links National Study of Caregivers (2011) and National Health and Aging Trends Study (2011-2016) data, using regression analysis and a sample of 380 EOL caregivers to examine how caregiving burden and benefits perceptions shape and moderate EOLCQ reports. Caregiving burden is unrelated to EOLCQ in adjusted models. Benefits are associated with marginally greater odds of being informed about the dying person’s condition and reporting their personal care needs were met. Burden and benefits moderate these two measures. Despite benefits, low burden caregivers report they were informed about the dying person’s condition with 90% probability. Regardless of burden, high benefits caregivers report the same with 90% probability. Low burden and benefits caregivers report met care needs with 90% probability. High burden and benefits caregivers have 90% probability of such reports. Given these reports are used in formal hospice care evaluations by CMS, additional research should explore why caregiving burden and benefit are associated with some EOLCQ measures and why individuals reporting high burden and benefits provide more positive EOLCQ appraisals.

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Influence of advance directives on reducing aggressive measures during end-of-life cancer care: A systematic review

Palliative & Supportive Care ◽

10.1017/s1478951520000838 ◽

2020 ◽

pp. 1-7

Author(s):

Lillian Ponchio e Silva Marchi ◽

Martins Fideles dos Santos Neto ◽

Júlia de Pauli Moraes ◽

Carlos Eduardo Paiva ◽

Bianca Sakamoto Ribeiro Paiva

Keyword(s):

Systematic Review ◽

Palliative Care ◽

End Of Life ◽

Cancer Patients ◽

Advance Directives ◽

End Of Life Care ◽

Hospice Care ◽

Assessment Tools ◽

Life Care ◽

Important Indicator

Abstract Context Although the literature recognizes the participation of patients in medical decisions as an important indicator of quality, there is a lack of consensus regarding the influence of advance directives (ADs) on reducing aggressive measures during end-of-life care involving cancer patients. Objective A systematic review was conducted to analyze the influence of ADs on reducing aggressive end-of-life care measures for cancer patients. Method We searched the Medline, Embase, Web of Science, and Lilacs databases for studies published until March 2018 using the following keywords, without language restrictions: “advance directives,” “living wills,” “terminal care,” “palliative care,” “hospice care,” and “neoplasms.” Article quality was assessed using study quality assessment tools from the Department of Health and Human Services (NHLBI). Results A total of 1,489 studies were identified; 7 met the inclusion criteria. The studies were recently published (after 2014, 71.4%). Patients with ADs were more likely to die at the site of choice (n = 3) and received less chemotherapy in the last 30 days (n = 1). ADs had no impact on intensive care unit admission (n = 1) or hospitalization (n = 1). One study found an association between ADs and referral to palliative care, but other did not find the same result. Significance of results Of the seven articles found, four demonstrated effects of ADs on the reduction in aggressive measures at the end of life of cancer patients. Heterogeneity regarding study design and results and poor methodological quality are challenges when drawing conclusions.

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Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

Perspectives on Swallowing and Swallowing Disorders (Dysphagia) ◽

10.1044/sasd23.4.173 ◽

2014 ◽

Vol 23 (4) ◽

pp. 173-186 ◽

Cited By ~ 2

Author(s):

Deborah Hinson ◽

Aaron J. Goldsmith ◽

Joseph Murray

Keyword(s):

Social Work ◽

End Of Life ◽

Case Studies ◽

End Of Life Care ◽

Hospice Care ◽

Patient Communication ◽

Life Care ◽

Speech Language Pathologists ◽

Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

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Ethical considerations at the end-of-life care

SAGE Open Medicine ◽

10.1177/20503121211000918 ◽

2021 ◽

Vol 9 ◽

pp. 205031212110009

Author(s):

Melahat Akdeniz ◽

Bülent Yardımcı ◽

Ethem Kavukcu

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Assisted Suicide ◽

Healthcare Professionals ◽

Ethical Decision Making ◽

Biomedical Ethics ◽

Artificial Nutrition ◽

Life Care ◽

Ethical Challenges ◽

Physician Assisted Suicide

The goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients’ desires. However, physicians face many ethical challenges in end-of-life care. Since the decisions to be made may concern patients’ family members and society as well as the patients, it is important to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Understanding the principles underlying biomedical ethics is important for physicians to solve the problems they face in end-of-life care. The main situations that create ethical difficulties for healthcare professionals are the decisions regarding resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, withholding and withdrawing treatments, euthanasia, and physician-assisted suicide. Five ethical principles guide healthcare professionals in the management of these situations.

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Life-and-Death Attitude and Its Formation Process and End-of-Life Care Expectations Among the Elderly Under Traditional Chinese Culture: A Qualitative Study

Journal of Transcultural Nursing ◽

10.1177/10436596211021490 ◽

2021 ◽

pp. 104365962110214

Author(s):

Lei Lei ◽

Quanxi Gan ◽

Chunyan Gu ◽

Jing Tan ◽

Yu Luo

Keyword(s):

Qualitative Study ◽

End Of Life ◽

Formation Process ◽

End Of Life Care ◽

Chinese Culture ◽

Life Quality ◽

The Elderly ◽

Life Care ◽

Life And Death ◽

The Individual

Introduction With the global aging process intensified, the demand for end-of-life care has surged, especially in China. However, its development is restricted. Understanding the life and death attitude among the elderly and its formation process, and clarifying their needs, are so important to promote social popularization of end-of-life care. Methodology This qualitative study included 20 elderly residents in Nan and Shuangbei Communities, Chongqing City, People’s Republic of China. Data were collected through semistructured in-depth individual interviews and processed by thematic analysis method. Results Three themes and eight subthemes were identified: Characteristics of formation process (passive thinking, closed and single), life-and-death attitude (cherish and enjoy life, quality of life priority, let death take its course) and expectations of end-of-life care (preferences, basic needs, good death). Discussion Life-and-death attitude and end-of-life care expectations of the elderly support the development and delivery of end-of-life care. Furthermore, the individual-family-hospital linkage discussion channel needs to be further explored.

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Serious Mental Illness and Hospice Care

Journal of Palliative Care ◽

10.1177/08258597211022073 ◽

2021 ◽

pp. 082585972110220

Author(s):

Gwen Levitt

Keyword(s):

Mental Health ◽

End Of Life ◽

End Of Life Care ◽

Psychiatric Illness ◽

Hospice Care ◽

Treatment Options ◽

Life Care ◽

Case Review ◽

Health Community ◽

End Stage

There are a small number of articles in the literature discussing palliative and end-of-life care in the SMI population. Most tackle the questions relating to competency to refuse care in end-stage anorexia or terminal medical conditions. This is a case review of a 55 year old patient with a complex psychiatric and medical history, who despite extensive treatment and long hospitalizations has failed to regain any ability to care for her basic needs. She has exhausted all available treatment options and her prognosis is extremely poor. The mental health community is resistant to discussing and/ or confronting the fact that such a patient faces with the need for end-of-life care directly related to chronic psychiatric illness.

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Old age as risk indicator for poor end-of-life care quality – A population-based study of cancer deaths from the Swedish Register of Palliative Care

European Journal of Cancer ◽

10.1016/j.ejca.2015.04.001 ◽

2015 ◽

Vol 51 (10) ◽

pp. 1331-1339 ◽

Cited By ~ 36

Author(s):

Magnus Lindskog ◽

Björn Tavelin ◽

Staffan Lundström

Keyword(s):

Palliative Care ◽

End Of Life ◽

Old Age ◽

End Of Life Care ◽

Population Based ◽

Care Quality ◽

Risk Indicator ◽

Life Care ◽

Population Based Study

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Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer

JCO Oncology Practice ◽

10.1200/op.21.00447 ◽

2021 ◽

Author(s):

Prasanna Ananth ◽

Sophia Mun ◽

Noora Reffat ◽

Soo Jung Kang ◽

Sarah Pitafi ◽

...

Keyword(s):

Health Care ◽

End Of Life ◽

Health Care Professionals ◽

End Of Life Care ◽

Care Quality ◽

Life Care ◽

Children With Cancer ◽

Symptom Screening ◽

Palliative Care Consultation ◽

Patient Reported

PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures. METHODS: We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8. RESULTS: Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible. CONCLUSION: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.

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

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909118812431 ◽

2018 ◽

Vol 36 (5) ◽

pp. 362-369 ◽

Cited By ~ 7

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.

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