scholarly journals Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: a meta-synthesis of qualitative and quantitative studies

BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e051717
Author(s):  
Shuqin Zhu ◽  
Hanfei Zhu ◽  
Xintong Zhang ◽  
Kouying Liu ◽  
Zumei Chen ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Mainland China ◽  
Qualitative Studies ◽  
Care Needs ◽  
Cross Sectional ◽  
Quantitative Studies ◽  
Dying Patients ◽  
Hospice And Palliative Care

ObjectiveTo investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China.MethodsA search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach.ResultsThe literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients’ needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers’ needs included needs to care for and improve the quality of life of patients, and to care for themselves well.ConclusionThis study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients’ demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care.

End-of-Life Needs of Dying Patients and Their Families in Mainland China: A Systematic Review

2021 ◽  
pp. 003022282199734
Author(s):  
Guobin Cheng ◽  
Chuqian Chen
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Web Of Science ◽  
Empirical Studies ◽  
Symptom Control ◽  
Mainland China ◽  
Spiritual Needs ◽  
Care Needs ◽  
Dying Patients

Objective To map the current research status and understand existing findings regarding end-of-life care needs in Mainland China. Method First-hand, empirical studies on the needs of dying patients and/or their families in Mainland China were searched in Web of Science, Scopus, Proquest, Taylor & Francis Online and CNKI in December 2019. Findings were synthesized. Results A total of 33 (10 qualitative) studies were involved. Chinese dying patients and their families had physical, psychological, social, and spiritual needs and needs for knowledge and information. Prevalent needs of dying patients were mainly symptom control and decent look, being treated kindly by professional caregivers, family accompany, dignity, and comfortable environment. Families mainly need healthcare professionals to take good care of patients and wishes for information, knowledge, and facilities to help themselves become better caregivers. Conclusions Findings lay the foundation for effective and tailored services for Chinese clients and provided insights for future investigations.

A Survey of Hospice and Palliative Care Physicians Regarding Palliative Sedation Practices

2016 ◽  
Vol 34 (3) ◽  
pp. 217-222 ◽  
Author(s):  
Michael R. Lux ◽  
Bridget McCrate Protus ◽  
Jason Kimbrel ◽  
Phyllis Grauer
Keyword(s):  
Palliative Care ◽  
Pain Control ◽  
The United States ◽  
Palliative Sedation ◽  
First Line ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Drug Of Choice ◽  
Dying Patients ◽  
Hospice And Palliative Care

Context: Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. Objectives: To determine the preferred medications physicians use when implementing palliative sedation. Methods: An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. Results: A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Conclusion: Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.

scholarly journals Knowledge, attitudes and preferences of palliative and end-of-life care among patients with cancer in mainland China: a cross-sectional study

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e051735
Author(s):  
Qinqin Cheng ◽  
Yinglong Duan ◽  
Hongling Zheng ◽  
Xianghua Xu ◽  
Khalid Khan ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Mainland China ◽  
Cross Sectional Study ◽  
Life Care ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patients With Cancer ◽  
Knowledge And Attitudes

ObjectivesThis study aimed to investigate the knowledge and attitudes of patients with cancer of palliative care and their preferences regarding end-of-life care in mainland China.DesignA cross-sectional study.SettingThis study was conducted in a tertiary cancer hospital.ParticipantsTwo hundred forty-seven patients with cancer were recruited and consented to fill out the questionnaires.Outcome measuresThe participants’ knowledge and attitudes of palliative care and their preferences of end-of-life care involving place of care, place of death, truth disclosure and treatments during end-of-life were measured.ResultsIn total, 239 questionnaires were valid. The vast majority of patients with cancer (81.2%) had never heard about palliative care or related policies, and only a few of them (5.8%) had somewhat or totally understanding of palliative care. Most participants (75.3%) had supportive attitudes towards palliative care. In terms of preferences for end-of-life care, most patients with cancer preferred to be cared for at home at the end of their life and to die at home. The majority of patients with cancer (65.7%) wanted to know their diagnosis or prognosis of the disease, regardless of the type of disease. More than half of the participants (54%) wished to improve their quality of life rather than prolong their life expectancy. More than a third of the patients with cancer preferred to entrust a family member or agent to sign medical decision agreements for them.ConclusionsIt is essential for healthcare providers to improve the understanding of patients with cancer of palliative care and be aware of the end-of-life care preferences of patients with cancer, in order to provide support that enables patients with cancer to receive end-of-life care that is accordant with their wishes.

Veterans

2019 ◽  
pp. 539-544
Author(s):  
Deborah Grassman
Keyword(s):  
Posttraumatic Stress Disorder ◽  
Palliative Care ◽  
Posttraumatic Stress ◽  
End Of Life ◽  
Healthcare Delivery ◽  
Moral Injury ◽  
Care Needs ◽  
Hospice And Palliative Care ◽  
Bereavement Care ◽  
Palliative Care Needs

In many ways, veterans face the end of life in a similar manner as civilians. In some ways, however, they experience death differently. Military experiences often change veterans in fundamental ways that shape, mold, destroy, and redeem the rest of their lives, including the ends of their lives. This chapter identifies some of these differences in the hopes that readers will understand the unique hospice and palliative care needs of veterans and their families. For example, the value of stoicism so earnestly and necessarily indoctrinated in young soldiers may interfere with a peaceful death for veterans depending on the degree to which stoicism has permeated their post-military lives. This chapter provides lessons that inform healthcare delivery for veterans and bereavement care for their families. It explains how posttraumatic stress disorder (PTSD) can become exacerbated at the end of life, complicating peaceful dying. An overlooked, unassessed wound, now identified as “soul injury” and distinguishable from moral injury, will also be addressed.

scholarly journals A third of dying patients do not have end-of-life discussions with a physician: A nationwide registry study

2021 ◽  
pp. 1-6
Author(s):  
Christina Melin-Johansson ◽  
Josefin Sveen ◽  
Malin Lövgren ◽  
Camilla Udo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Associated Factors ◽  
National Level ◽  
Registry Study ◽  
Next Of Kin ◽  
Care Needs ◽  
Nationwide Registry ◽  
Dying Patients ◽  
Eol Care

Abstract Objective The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors. Method A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015–2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients’ records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors. Results About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin. Significance of results The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

Characteristics of Hospice and Palliative Care Programs in US Prisons: An Update and 5-Year Reflection

2019 ◽  
Vol 37 (7) ◽  
pp. 514-520
Author(s):  
Stephanie Grace Prost ◽  
Margaret M. Holland ◽  
Heath C. Hoffmann ◽  
George E. Dickinson
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Management Strategies ◽  
Public Support ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Frequency Distributions ◽  
Dying Patients ◽  
Palliative Care Services ◽  
Hospice And Palliative Care

Individuals with terminal illness are dying behind bars and many state prison administrators have incorporated on-site hospice and palliative care services. Little is known, however, about these programs since a 2010 study of prison hospice characteristics. We provide an updated description and reflection of current hospice and palliative care programs in state prisons serving incarcerated persons with terminal illness. A cross-sectional survey was sent to representatives of all known prisons offering hospice and palliative care programs and services (N = 113). Questions were drawn from an earlier iteration regarding interdisciplinary team (IDT) membership, training length and topics, peer caregivers, visitation policies, bereavement services, perceived stakeholder support, and pain management strategies. Additional questions were added such as estimated operational costs, peer caregiver input in patient care, and the strengths and weaknesses of such programs. Frequency distributions were calculated for all study variables. Responding representatives (n = 33) indicated IDTs remain integral to care, peer caregivers continue to support dying patients, and perceived public support for these programs remains low. Reduced enthusiasm for the programs may negatively influence administrative decision-making and program resources. Further, peer caregiver roles appear to be changing with caregivers charged with fewer of the identified tasks, compared with the 2010 study.

scholarly journals Emergency Department Referral for Hospice and Palliative Care Differs among Patients with Different End-of-Life Trajectories: A Retrospective Cohort Study

2021 ◽  
Vol 18 (12) ◽  
pp. 6286
Author(s):  
Victor Wei-Che Shen ◽  
Che Yang ◽  
Li-Ling Lai ◽  
Ying-Ju Chen ◽  
Hsien-Hao Huang ◽  
...  
Keyword(s):  
Emergency Department ◽  
Palliative Care ◽  
Organ Failure ◽  
End Of Life ◽  
Care Practice ◽  
Care Needs ◽  
Life Trajectories ◽  
Emergency Units ◽  
Hospice And Palliative Care ◽  
Palliative Care Needs

Emergency units have been gradually recognized as important settings for palliative care initiation, but require precise palliative care assessments. Patients with different illness trajectories are found to differ in palliative care referrals outside emergency unit settings. Understanding how illness trajectories associate with patient traits in the emergency department may aid assessment of palliative care needs. This study aims to investigate the timing and acceptance of palliative referral in the emergency department among patients with different end-of-life trajectories. Participants were classified into three end-of-life trajectories (terminal, frailty, organ failure). Timing of referral was determined by the interval between the date of referral and the date of death, and acceptance of palliative care was recorded among participants eligible for palliative care. Terminal patients had the highest acceptance of palliative care (61.4%), followed by those with organ failure (53.4%) and patients with frailty (50.1%) (p = 0.003). Terminal patients were more susceptible to late and very late referrals (47.4% and 27.1%, respectively) than those with frailty (34.0%, 21.2%) and with organ failure (30.1%, 18.8%) (p < 0.001, p = 0.022). In summary, patients with different end-of-life trajectories display different palliative care referral and acceptance patterns. Acknowledgement of these characteristics may improve palliative care practice in the emergency department.

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