Kelley Finch Newcomer, Robert L Fine, Antoinette Fidelia Newman
{"title":"Food as Love: Ethical and Moral Dilemmas in Withdrawal of Artificial Nutrition and Hydration in the Minimally Conscious State.","authors":"Kelley Finch Newcomer, Robert L Fine, Antoinette Fidelia Newman","doi":"10.1177/08258597211014359","DOIUrl":"10.1177/08258597211014359","url":null,"abstract":"<p><p>Supportive Palliative Care and Hospice professionals frequently attend to Minimally Conscious State (MCS) patients near the end of life and in so doing, face decisions over maintenance or withdrawal of artificial nutrition and hydration. Although both withholding and withdrawal of artificial nutrition and hydration (ANH) in such circumstances are considered by experts in ethics and law to be acceptable, not all families nor health care professionals agree. This paper will explore basic aspects of serious brain injuries, especially MCS, the psychological role of food in interpersonal relationships, and lessons from clinical ethics that can help in goals of care discussions about withdrawal of ANH.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 4","pages":"407-411"},"PeriodicalIF":1.7,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/08258597211014359","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38944157","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hadi Hassankhani, Mohammad Hajaghazadeh, Samira Orujlu
{"title":"Patients' Experiences of Cancer Pain: A Descriptive Qualitative Study.","authors":"Hadi Hassankhani, Mohammad Hajaghazadeh, Samira Orujlu","doi":"10.1177/08258597221149545","DOIUrl":"10.1177/08258597221149545","url":null,"abstract":"<p><strong>Objective: </strong>The aim of this study was to explore the cancer pain experiences of Iranian patients.</p><p><strong>Design: </strong>A qualitative descriptive design was used.</p><p><strong>Methods: </strong>This qualitative descriptive study was performed on 17 participants between December 2020 and September 2021. Data were collected using semistructured interviews and analyzed by Graneheim and Lundman's content analysis method.</p><p><strong>Results: </strong>Three main categories emerged in relation to patients' experiences of cancer pain. Categories included (1) characteristics of cancer pain, (2) pain self-management strategies, and (3) influence of pain on patient and her/his family.</p><p><strong>Conclusions: </strong>Most patients believe that pain is God's will, and family members, doctors, and nurses can assist patients cope with pain by respecting this belief and supporting spiritual healing. Strengthening pain management strategies, expanding social networks, and convincing the patients that they are not an interruption to their families can all help patients maintain their fighting spirit and pain tolerance. To provide holistic care, healthcare providers, particularly nurses, should consider the physical, sociocultural, and spiritual aspects of cancer pain.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 4","pages":"465-472"},"PeriodicalIF":1.7,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10544749","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Effect of Auricular Acupressure in Management of Constipation in Palliative Care Patients.","authors":"Derya Biçak Ayik, Gülbeyaz Can","doi":"10.1177/08258597231181040","DOIUrl":"https://doi.org/10.1177/08258597231181040","url":null,"abstract":"<p><p><b>Objectives:</b> This experimental randomized-controlled study was performed to define the efficacy of auricular acupressure (AA) in the management of constipation developing in palliative care patients. <b>Methods:</b> According to the pre-prepared randomization list, 44 patients were included in the experimental group and 46 patients were included in the control group. Routine clinical treatment and care implementation were maintained in the patients in both groups. AA was performed for 4 weeks in patients in the experimental group. During the study, to determine the complaints of the patients regarding constipation, the information in the daily patient chart was examined at least 5 times by interviewing with the patient/patient's relative in the clinic and/or via phone call, and the results were recorded in the patient chart and data collection forms. The independent variable of the study is AA application, and the dependent variables are constipation and quality of life. <b>Results:</b> It was determined that there was no statistically significant difference between the daily defecation frequency of the 2 groups during the first 11 days. However, after the 12th day, the daily stool frequency of the experimental group was higher compared to the control group and this difference obtained between the 2 groups was statistically significantly different. AA was effective in decreasing laxative use. <b>Conclusion:</b> This intervention increased stool frequency, reduced physical and psychosocial symptoms, anxieties, and improved stool satisfaction and it was an effective approach to improving the quality of life. It is recommended that the daily use of AA should be evaluated. The healthcare providers including nurses, patients, and patient relatives should be trained regarding AA.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":" ","pages":"8258597231181040"},"PeriodicalIF":1.7,"publicationDate":"2023-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10534283","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Chinese Diaspora Communities' Knowledge of and Engagement with Advance Care Planning: A Systematic Integrative Review.","authors":"Zhuangshuang Li, Esther Ruth Beck, Sonja McIlfatrick, Felicity Hasson","doi":"10.1177/08258597231158321","DOIUrl":"https://doi.org/10.1177/08258597231158321","url":null,"abstract":"<p><p><b>Objectives:</b> To synthesize evidence regarding Chinese diasporas' understanding, experience, and factors influencing engagement with advance care planning. <b>Methods:</b> A systematic integrative review using content analysis. Seven electronic databases (Embase, CINAHL, SCOPUS, Web of Science, Medline (OVID), PsycINFo, and The Cochrane Library) and gray resources were searched for studies from January 1990 to March 2022. Study quality appraisal was undertaken. <b>Results:</b> 27 articles were identified and rated as moderate to good. Two overarching and interrelated themes were identified, \"<b>Awareness and knowledge\"</b> and \"<b>Engagement with advance care planning</b>.\" There are low levels of awareness, knowledge and engagement with advance care planning for Chinese diaspora. Findings highlight that this is influenced by two key factors. First, the geographic context and legal, cultural, and social systems within which the Chinese diasporas are living act as a potential catalyst to enhance awareness and engagement with advance care planning. Second, aspects of Chinese diasporas' original culture, such as filial piety and a taboo surrounding death, were reported to negatively affect the promotion and engagement of advance care planning. <b>Significance of Results:</b> Chinese diasporas are intermediaries between two divergent cultures that intertwine to strongly influence engagement with advance care planning. Hence, a bespoke culturally tailored approach should be accommodated in future research and practice for Chinese communities in multicultural countries to further advance palliative and end-of-life care awareness among this group.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 3","pages":"381-397"},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/cc/d5/10.1177_08258597231158321.PMC10350701.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9829305","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Erna Judith Roach, Omar Al Omari, Sheeba Elizabeth John, Frincy Francis, Judie Arulappan, Lina Shakman, Aysha Al Hashmi, Sulaiman Al Sabei, Atika Khalaf
{"title":"Challenges Experienced by Nurses in Providing Pediatric Palliative Care: An Interpretive Phenomenological Analysis.","authors":"Erna Judith Roach, Omar Al Omari, Sheeba Elizabeth John, Frincy Francis, Judie Arulappan, Lina Shakman, Aysha Al Hashmi, Sulaiman Al Sabei, Atika Khalaf","doi":"10.1177/08258597231173313","DOIUrl":"https://doi.org/10.1177/08258597231173313","url":null,"abstract":"<p><p><b>Objectives:</b> Pediatric leukemia is the most common cancer among children younger than 14 years of age. Children with leukemia require palliative care as additional support from the health care team. Providing palliative care to children is challenging. Thus, this study explored the challenges experienced by nurses in providing pediatric palliative care to children with leukemia. <b>Methods:</b> Semi-structured face-to-face interviews were conducted on a purposive sample of 11 nurses in the hematology-oncology units of a tertiary care hospital in Oman. <b>Results:</b> Interviews were transcribed and analyzed using interpretive phenomenological analysis, which revealed three main themes and seven subthemes related to challenges in providing pediatric palliative care: <i>Personal challenges</i>: Nurses were unable to neutralize their emotions, which burdened them emotionally; due to multitasking, nurses were unable to manage their tasks within the expected time frame; nurses were stressful when they participated in explaining the diagnosis to the parents; and nurses felt powerless when the health condition of some children deteriorated. <i>Educational challenges</i>: Nurses felt unprepared to meet the physical/psychosocial aspects of caring for children with leukemia. <b>Organizational challenges:</b> Nurses stated that families and nurses required rooms to pray, rest, and read Quran, and they needed a private place to speak to families; and nurses mentioned that there are limited number of psychologists to meet the psychological and social needs of children and their families. <b>Conclusion:</b> Prioritizing and implementing strategies for a supportive workplace, guided clinical practice, and maximizing nurses' satisfaction are crucial.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 3","pages":"355-363"},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10150669","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Caroline Cerilli, Gabrielle Katz, Angelo E Volandes, Aretha Delight Davis, Michael K Paasche-Orlow, Tyler G James, Michael M McKee
{"title":"\"There is No Communication\": A Qualitative Examination of Deaf Signers' Experiences With Advance Care Planning.","authors":"Caroline Cerilli, Gabrielle Katz, Angelo E Volandes, Aretha Delight Davis, Michael K Paasche-Orlow, Tyler G James, Michael M McKee","doi":"10.1177/08258597231179763","DOIUrl":"https://doi.org/10.1177/08258597231179763","url":null,"abstract":"<p><p><b>Objective(s):</b> Deaf American Sign Language (ASL) users are subject to health care disparities resulting from communication and language barriers. Currently, few resources on advance care planning and end-of-life care exist in ASL. This study explores Deaf ASL users' perceptions and experiences with end-of-life care and advance care planning. <b>Methods:</b> Semi-structured 1:1 interviews with Deaf signers were translated, and transcribed into English by a bilingual researcher. Investigators inductively coded transcripts and identified themes of barriers, facilitators, knowledge, and sources of information regarding end-of-life care. Participants' knowledge of advance care planning and completion of advance care planning documents were evaluated using a brief assessment. <b>Results:</b> Eleven Deaf ASL users participated in the study with two deaf interviewers. Participants reported barriers to end-of-life care including poor provider communication, inaccessible sources, and inadequate provision of accommodations, leading to patient distrust. Participants' understanding of advance care planning was facilitated by accessible forms of communication and their social networks, such as family, friends, and Deaf peers. Participants primarily gained information on end-of-life care from first-hand familial experience, peers, and media. Participants' mean advance care planning knowledge was 4.6 out of 15 (SD = 2.6). <b>Conclusions:</b> Deaf ASL users face scarce accessible resources around end-of-life care, lowering their ability to understand and proceed with advance care planning. Implementation of ASL accessible advance care planning educational tools in health care settings is needed.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 3","pages":"372-380"},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9796333","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Development of a Palliative Care Approach for Primary Progressive Aphasia: My Experience as a Person Living With This Rare Disorder.","authors":"Joanne T Douglas","doi":"10.1177/08258597211026711","DOIUrl":"https://doi.org/10.1177/08258597211026711","url":null,"abstract":"<p><p>Frontotemporal disorders are a group of rare young-onset dementias for which there is no cure, nor is there any way to slow the underlying progressive brain degeneration. To date those affected have typically received very little, if any, follow-up care after diagnosis, particularly in the early stages of their disease. I have received a clinical diagnosis, supported by imaging, of primary progressive aphasia, a form of frontotemporal degeneration characterized in the initial phase by progressive impairment of language ability. From the onset, I have been fortunate to receive excellent ongoing palliative care from a multidisciplinary team, some of whom had never previously seen anyone with this disorder. My quality of life has been enhanced by an evolving range of creative strategies and adaptations targeted to my deficits as they have arisen. In this paper, I discuss my experience of the process underlying this personalized plan, which serves as a paradigm for the development of novel palliative care approaches for people living with rare disorders, both neurodegenerative diseases and other conditions.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 3","pages":"276-281"},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/08258597211026711","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9783958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Specialist Palliative Care and Dementia: Staff Challenges and Learning Needs.","authors":"S J Currie, C Curtin, S Timmons","doi":"10.1177/08258597231180966","DOIUrl":"10.1177/08258597231180966","url":null,"abstract":"<p><p><b>Objective:</b> This study explored the perspectives of specialist palliative care (SPC) teams in Ireland, in relation to personal learning needs and education regarding dementia care. <b>Methods:</b> This mixed-methods study involved a survey and focus group. SPC staff were recruited through a professional palliative care society and via hospices in 4 regions. Survey items included challenges in clinical care, personal learning needs, and preferred modes of educational delivery. Quantitative data analysis was descriptive; open-answer survey questions and the focus group transcript underwent thematic analysis. <b>Results:</b> In total, 76 staff completed surveys and rated the following as most challenging: timely access to community agency and specialist support; and managing the needs of people with dementia (PwD). Respondents volunteered additional challenges around the timing/duration of SPC involvement, prognostication, and inadequate knowledge of local services. Staff ranked learning needs as highest in: nonpharmacological management of noncognitive and cognitive symptoms; differentiation of dementia subtypes; and pharmacological management of cognitive symptoms. The focus group (n = 4) gave deeper perspectives on these topics. Overall, 79.2% of staff preferred formal presentations by dementia-care specialists and 76.6% preferred e-learning. <b>Conclusion:</b> Several dementia-care challenges and learning needs are identified by SPC staff, as above. These can inform the design and delivery of tailored education programs for SPC staff. There is also a need for closer working between dementia services and SPC services to provide integrated, holistic care for PwD. One aspect of achieving this is greater awareness of local dementia-care services among SPC staff, and vice versa.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 3","pages":"282-294"},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10350715/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9820961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christel Hedman, Peter Strang, Staffan Lundström, Lisa Martinsson
{"title":"Symptom Management and Support in Dying Patients with Cancer and Coronavirus Disease-19-A Register-Based Study.","authors":"Christel Hedman, Peter Strang, Staffan Lundström, Lisa Martinsson","doi":"10.1177/08258597231157622","DOIUrl":"10.1177/08258597231157622","url":null,"abstract":"<p><strong>Objective: </strong>Little is known to what extent access to specialist palliative care (SPC) for cancer patients dying with coronavirus disease-2019 (COVID-19) affects the occurrence of breakthrough symptoms, symptom relief, and overall care, compared to hospital deaths. Our aim was to include patients with both COVID-19 and cancer and compare those dying in hospitals with those dying in SPC with reference to the quality of end-of-life care.</p><p><strong>Methods: </strong>Patients with both cancer and COVID-19 who died in hospitals (<i>n</i> = 430) and within SPC (<i>n</i> = 384) were identified from the Swedish Register of Palliative Care. The hospital and SPC groups were compared regarding the quality of end-of-life care, including the occurrence of 6 breakthrough symptoms during the last week in life, symptom relief, end-of-life care decisions, information, support, and human presence at death.</p><p><strong>Results: </strong>Breakthrough of breathlessness was more common in the hospital patients compared to the SPC patients (61% and 39%, respectively; <i>p</i> < .001), while pain was less common (65% and 78%, respectively; <i>p</i> < .001). Breakthrough of nausea, anxiety, respiratory secretions, or confusion did not differ. All 6 symptoms, except for confusion, were more often completely relieved in SPC (<i>p</i> = .014 to <i>p</i> < .001 in different comparisons). In SPC, a documented decision about the goal being end-of-life care and information about this were more common than in hospitals (<i>p</i> < .001). Also, to have family members present at the time of death and for family members to be offered a follow-up talk afterward was more common in SPC (<i>p</i> < .001).</p><p><strong>Conclusion: </strong>More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 3","pages":"261-267"},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10350711/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9829290","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Nationwide Survey on Caregiver Burden When Supporting Terminal Cancer Patients with Dementia: Bereaved Family Members' Perspective.","authors":"Ayumi Takao, Harue Arao, Sena Yamamoto, Miwa Aoki, Katsuyasu Kouda, Tatsuya Morita, Yoshiyuki Kizawa, Satoru Tsuneto, Yasuo Shima, Kento Masukawa, Mitsunori Miyashita","doi":"10.1177/08258597231169625","DOIUrl":"https://doi.org/10.1177/08258597231169625","url":null,"abstract":"<p><p><b>Objective:</b> The prevalence of dementia and cancer has increased in recent years. The presence of dementia complicates the care of terminal cancer patients and affects their family caregivers. However, palliative care research seldom focuses on the family caregivers of patients with terminal cancer and dementia. This study aimed to evaluate the degree and factors of caregiver burden in cancer patients with dementia who died in hospice palliative care units. <b>Methods:</b> A nationwide cross-sectional survey was conducted among bereaved family members of patients with cancer who died in palliative care units. An anonymous self-report questionnaire was sent to bereaved family members, and they were asked if they were aware of the diagnosis of dementia. The short version of the Caregiver Consequence Inventory was used to measure caregiver burden. <b>Results:</b> The analysis included 670 bereaved family members. Of these, 83 (12.4%) were bereaved family members of terminal cancer patients with dementia. The caregiver burden was statistically significantly higher (3.61 ± 1.58 vs 3.22 ± 1.47; p < 0.036) among family caregivers of terminal cancer patients with dementia. Longer anti-cancer treatment duration (odd ratio, 4.63), poor mental and physical health of family caregivers (odds ratio, 2.05 and 2.20, respectively), pain (odd ratio, 1.72), and dyspnea (odds ratio, 1.67) were contributing factors for caregiver burden. <b>Conclusions:</b> Family caregivers of terminal cancer patients with dementia require care that considers the characteristics of the two serious diseases. Considering the goal of anti-cancer treatment and symptom relief may be a useful strategy for reducing caregiver burden.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":"38 3","pages":"326-335"},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10166771","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}