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

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.

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

2021 ◽  
Vol 18 (15) ◽  
pp. 7942
Author(s):  
Sok Man Leong ◽  
Kuai In Tam ◽  
Sok Leng Che ◽  
Ming Xia Zhu
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Chinese Culture ◽  
Healthcare Professionals ◽  
Hospice Care ◽  
Attitude Scale ◽  
Care Quality ◽  
Public Consultation ◽  
Life Care

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.

“It Made Me Feel Like I Didn’t Know My Own Body”: Patient-Provider Relationships, LGBTQ+ Identity, and End-of-Life Discussions

2021 ◽  
pp. 104990912199627
Author(s):  
Kristen E. Pecanac ◽  
Madison Vander Hill ◽  
Elizabeth Borkowski
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Quality Care ◽  
Life Care ◽  
Patient Relationship ◽  
Care Needs ◽  
Lgbtq Health ◽  
Advance Care ◽  
Multiple Challenges ◽  
Patient Narrative

Purpose: LGBTQ+ individuals experience multiple challenges receiving quality care at the end of life, such as lack of confidence in the healthcare system to address their needs and lack of knowledge about advance care planning. Important gaps remain about the needs of LGBTQ+ individuals in the provider-patient relationship and how critical discussions about the end of life occur or do not occur in that relationship. The purpose of this study is to explore patients’ narratives of their relationship with their provider and their experiences discussing end-of-life care with their providers, among patients who do and do not identify as LGBTQ+. Methods: Twenty-nine attendants of an event devoted to LGBTQ+ health, 15 of which identified as LGBTQ+, completed an altered version of the CAHPS® Patient Narrative Elicitation Protocol. We used inductive content analysis to qualitatively analyze the data. Results: Respondents described wanting to be heard, finding safety and trust, and valuing competency in their relationship with their provider. Respondents who identified as LGBTQ+ additionally 1) valued providers who avoided making assumptions, 2) looked for cues of safety to indicate they would be accepted by the provider, and 3) sought providers competent in LGBTQ+ care needs. Few respondents had discussed end-of-life care with their provider, although some assumed that their provider may or may not be able to meet their needs based on aspects of their provider-patient relationship. Conclusions: Strengthening patient-provider relationships may help improve the care of LGBTQ+ populations, particularly for the end of life.

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

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
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.

scholarly journals We Want More Than Life-Sustaining Treatment during End-of-Life Care: Focus-Group Interviews

2021 ◽  
Vol 18 (9) ◽  
pp. 4415
Author(s):  
Mirinae Kim ◽  
Minju Kim
Keyword(s):  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Treatment Needs ◽  
Focus Group Interviews ◽  
Care Needs ◽  
Basic Care ◽  
Life Sustaining Treatment ◽  
Group Interviews

We qualitatively investigated end-of-life care needs. Data were collected via focus-group interviews with three groups: young adults, middle-aged adults, and older adults. The key question was, “What kind of care would you like to receive at the end of life?” Interview data were transcribed and analyzed using content analysis. End-of-life care needs were classified into six categories: life-sustaining treatment needs, physical care needs, emotional care needs, environmental needs, needs for respect, and needs for preparation for death. Because the Korean culture is family-oriented and talking about death is taboo, Korean patients at the end of their life do not make decisions about life-sustaining treatment or actively prepare for death. Therefore, to provide proper end-of-life care, conversations and shared decision-making among patients and their families are crucial. Further, we must respect patients’ dignity and help them achieve a good death by understanding patients’ basic care preferences. Future research should continue examining end-of-life care needs that reflect the social and cultural context of Korea to inform instrument development.

Serious Mental Illness and Hospice Care

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.

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

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.

Pulmonary referrals to specialist palliative medicine: a survey

2021 ◽  
pp. bmjspcare-2021-003386
Author(s):  
Michael Bonares ◽  
Kenneth Mah ◽  
David Christiansen ◽  
John Granton ◽  
Andrea Weiss ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Chronic Respiratory Disease ◽  
Life Care ◽  
Care Needs ◽  
Patients With Cancer ◽  
Referral Criteria ◽  
Referral Practices ◽  
Palliative Care Needs

ObjectivesPatients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.MethodsRespirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.ResultsThe response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013).ConclusionsPossible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.

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