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.

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 Family carer support in home and hospital: a cross-sectional survey of specialised palliative care

2019 ◽  
Vol 10 (4) ◽  
pp. e33-e33
Author(s):  
Maarten Vermorgen ◽  
Aline De Vleminck ◽  
Kathleen Leemans ◽  
Lieve Van den Block ◽  
Chantal Van Audenhove ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Palliative Care Unit ◽  
Information Support ◽  
Family Carers ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services

ObjectivesTo evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.MethodsA cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.ResultsOf all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.ConclusionsFamily carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.

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.

Nationwide survey on volunteers' training in hospice and palliative care in Poland

2016 ◽  
Vol 9 (3) ◽  
pp. e25-e25 ◽  
Author(s):  
Leszek Pawłowski ◽  
Monika Lichodziejewska-Niemierko ◽  
Iga Pawłowska ◽  
Wojciech Leppert ◽  
Piotr Mróz
Keyword(s):  
Palliative Care ◽  
Nationwide Survey ◽  
Patient Support ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Essential Requirement ◽  
Proper Training ◽  
The Individual ◽  
Hospice And Palliative Care ◽  
Charity Work

BackgroundVolunteers working in hospice and palliative care facilities in Poland undertake various activities which are performed in accordance with legal regulations and the individual policies of each hospice. The aim of this study was to explore the roles and training of volunteers working in hospice and palliative care settings.MethodsA cross-sectional survey was carried out that investigated the services performed by volunteers and their preparation for work within residential hospices. Questionnaires were distributed to volunteers and hospice representatives, and the responses obtained underwent statistical analysis.ParticipantsA total of 180 volunteers and 28 hospice representatives from 29 residential hospices participated in this survey.ResultsAll hospices surveyed were supported by volunteers. 79% of volunteers worked alongside patients and performed the following services: accompanying patients (76%), feeding patients (61%), cleaning rooms (48%), dressing and bathing (42%) and organising leisure time (40%). Fewer volunteers were involved in activities outside of patient support—for example, charity work and fundraising (34%), cleaning hospice buildings (23%) as well as providing information and education (22%). According to volunteers, prior to undertaking their duties, 64% participated in theoretical training and 37% took part in a practical course. The majority attended courses relating to general knowledge of hospice and palliative care (64%) and volunteer rights and duties (55%).ConclusionsOverall, proper training was an essential requirement needed to be fulfilled by volunteers, particularly when involved in direct patient support. Most volunteers were simultaneously involved in various areas of service; therefore, their training should be comprehensive.

scholarly journals Medical Cannabis and Utilization of Nonhospice Palliative Care Services: Complements and Alternatives at End of Life

2022 ◽  
Vol 6 (1) ◽  
Author(s):  
James A Croker ◽  
Julie Bobitt ◽  
Kanika Arora ◽  
Brian Kaskie
Keyword(s):  
Palliative Care ◽  
Military Service ◽  
Terminal Illness ◽  
Well Being ◽  
Ordinary Least Squares ◽  
Care Utilization ◽  
Medical Cannabis ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Logistic Regression Models

Abstract Background and Objectives There is a need to know more about cannabis use among terminally diagnosed older adults, specifically whether it operates as a complement or alternative to palliative care. The objective is to explore differences among the terminal illness population within the Illinois Medical Cannabis Program (IMCP) by their use of palliative care. Research Design and Methods The study uses primary, cross-sectional survey data from 708 terminally diagnosed patients, residing in Illinois, and enrolled in the IMCP. We compared the sample on palliative care utilization through logistic regression models, examined associations between palliative care and self-reported outcome improvements using ordinary least squares regressions, and explored differences in average pain levels using independent t-tests. Results 115 of 708 terminally diagnosed IMCP participants were receiving palliative care. We find increased odds of palliative care utilization for cancer (odds ratio [OR] [SE] = 2.15 [0.53], p < .01), low psychological well-being (OR [SE] = 1.97 [0.58], p < .05), medical complexity (OR [SE] = 2.05 [0.70], p < .05), and prior military service (OR [SE] = 2.01 [0.68], p < .05). Palliative care utilization is positively associated with improvement ratings for pain (7.52 [3.41], p < .05) and ability to manage health outcomes (8.29 [3.61], p < .01). Concurrent use of cannabis and opioids is associated with higher pain levels at initiation of cannabis dosing (p < .05). Discussion and Implications Our results suggest that cannabis is largely an alternative to palliative care for terminal patients. For those in palliative care, it is a therapeutic complement used at higher levels of pain.

scholarly journals Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: a cross-sectional survey in Karachi, Pakistan

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Sameena Shah ◽  
Faizan Qaisar ◽  
Iqbal Azam ◽  
Khairunnisa Mansoor
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Multivariable Analysis ◽  
Age Groups ◽  
Care Program ◽  
Education Level ◽  
Social Needs ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Care Approach

Abstract Background Limited comprehension of the concept of palliative care and misconceptions about it are barriers to meaningful utilisation of palliative care programs. As caregivers play an integral role for patients with terminal illness, it is necessary to assess their perceptions and attitudes towards the palliative care approach. Method A cross-sectional survey was conducted. Data was collected from the Aga Khan Hospital in-patient and out-patient departments and home-based palliative care services. All adult caregivers who met the inclusion criteria and consented, completed a questionnaire till the sample size was reached. Univariate and multivariate multivariable analysis was done and results were reported as crude prevalence’s, crude and adjusted prevalence ratios with 95% confidence intervals using Cox-proportional hazard algorithm. Mean difference of knowledge and attitude scores by caregiver variables were assessed using one-way ANOVA. SPSS version 18 was used and a p-value of less than 5% was treated as significant. Results Out of 250 caregivers more than 60% were 40 years or less, majority were males and at least graduates. Approximately 70% of the respondents agreed with the statement that the person suffering from cancer should be informed about the diagnosis and disease progression. About 45% (95% C.I.: 39.03, 51.37%) of the study respondents had enhanced understanding about palliative care. Individuals under 40 years old, those with an education level of at least grade 10, children or relatives were found to have significantly more enhanced knowledge about palliative care. The majority believed that the patient should be informed about the diagnosis and should be facilitated to carry out routine activities and fulfill their wishes. Conclusion Nearly half of the caregivers had enhanced understanding of the palliative care approach. They showed consistent understanding of two foundational aspects indicating correct knowledge across age groups, gender, education level, and relationship with the patient. Firstly, that palliative care should be offered to everyone suffering from a terminal illness and, secondly, that this approach encompasses not just physical, but also psychological and social needs of the patient and the family. These findings will help inform the establishment of a palliative care program that fills the gaps in comprehension and knowledge of caregivers.

Volunteering in hospice and palliative care in the United Kingdom

2018 ◽  
Author(s):  
Ros Scott
Keyword(s):  
Palliative Care ◽  
United Kingdom ◽  
Care Services ◽  
The United Kingdom ◽  
Strategic Direction ◽  
Palliative Care Services ◽  
History Of ◽  
The Uk ◽  
Hospice And Palliative Care ◽  
Changing Role

This chapter explores the history of volunteers in the founding and development of United Kingdom (UK) hospice services. It considers the changing role and influences of volunteering on services at different stages of development. Evidence suggests that voluntary sector hospice and palliative care services are dependent on volunteers for the range and quality of services delivered. Within such services, volunteer trustees carry significant responsibility for the strategic direction of the organiszation. Others are engaged in diverse roles ranging from the direct support of patient and families to public education and fundraising. The scope of these different roles is explored before considering the range of management models and approaches to training. This chapter also considers the direct and indirect impact on volunteering of changing palliative care, societal, political, and legislative contexts. It concludes by exploring how and why the sector is changing in the UK and considering the growing autonomy of volunteers within the sector.

Cannabis and End-of-Life Care: A Snapshot of Hospice Planning and Experiences Among Illinois Medical Cannabis Patients With A Terminal Diagnosis

2021 ◽  
pp. 104990912110186
Author(s):  
James Alton Croker ◽  
Julie Bobitt ◽  
Sara Sanders ◽  
Kanika Arora ◽  
Keith Mueller ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Fast Track ◽  
Hospice Care ◽  
Cannabis Use ◽  
Care Plan ◽  
Medical Cannabis ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Eol Care

Introduction: Between 2013 and 2019, Illinois limited cannabis access to certified patients enrolled in the Illinois Medical Cannabis Program (IMCP). In 2016, the state instituted a fast-track pathway for terminal patients. The benefits of medicinal cannabis (MC) have clear implications for patients near end-of-life (EOL). However, little is known about how terminal patients engage medical cannabis relative to supportive care. Methods: Anonymous cross-sectional survey data were collected from 342 terminal patients who were already enrolled in ( n = 19) or planning to enroll ( n = 323) in hospice for EOL care. Logistic regression models compare patients in the sample on hospice planning vs. hospice enrollment, use of palliative care vs. hospice care, and use standard care vs non-hospice palliative care. Results: In our sample, cancer patients ( OR = 0.21 (0.11), p < .01), and those who used the fast-track application into the IMCP ( OR = 0.11 (0.06), p < .001) were less likely to be enrolled in hospice. Compared to patients in palliative care, hospice patients were less likely to report cancer as their qualifying condition ( OR = 0.16 (0.11), p < .01), or entered the IMCP via the fast-track ( OR = 0.23 (0.15), p < .05). Discussion: Given low hospice enrollment in a fairly large EOL sample, cannabis use may operate as an alternative to supportive forms of care like hospice and palliation. Clinicians should initiate conversations about cannabis use with their patients while also engaging EOL Care planning discussions as an essential part of the general care plan.

scholarly journals Factors Influencing the Willingness of Palliative Care Utilization among the Older Population with Active Cancers: A Case Study in Mandalay, Myanmar

2021 ◽  
Vol 18 (15) ◽  
pp. 7887
Author(s):  
Aye Tinzar Myint ◽  
Sariyamon Tiraphat ◽  
Isareethika Jayasvasti ◽  
Seo Ah Hong ◽  
Vijj Kasemsup
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Rural Areas ◽  
Psychosocial Support ◽  
Care Utilization ◽  
Severe Illness ◽  
Cross Sectional Survey ◽  
Care Services ◽  
Palliative Care Services ◽  
Older Cancer Patients

Palliative care is an effective, multidisciplinary healthcare service to alleviate severe illness patients from physical, psychological, and spiritual pain. However, global palliative care has been underutilized, especially in developing countries. This cross-sectional survey aimed to examine the factors associated with older cancer patients’ willingness to utilize palliative care services in Myanmar. The final sample was composed of 141 older adults, 50-years of age and above who suffered from cancers at any stage. Simple random sampling was applied to choose the participants by purposively selecting three oncology clinics with daycare chemotherapy centers in Mandalay. We collected data using structured questionnaires composed of five sections. The sections include the participant’s socio-economic information, disease status, knowledge of palliative care, psychosocial and spiritual need, practical need, and willingness to utilize palliative care services. The study found that approximately 85% of older cancer patients are willing to receive palliative care services. The significant predictors of willingness to utilize palliative care services include place of living, better palliative care knowledge, more need for spiritual and psychosocial support, and practical support. This study can guide health policymakers in increasing the rate of palliative care utilization. The suggested policies include developing community-level palliative care services in Myanmar, especially in rural areas, promoting palliative care knowledge, applying appropriate religious and spiritual traditions at palliative treatment, and developing suitable medicines for the critically ill.

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