“We Are All Humans and Deserve a Decent Way to Go”: Examining Professional’s Experiences With Providing End-of-Life Care in Correctional Institutions

2021 ◽  
pp. 073401682110208
Author(s):  
Mollee Steely Smith ◽  
Brooke Cooley ◽  
Tusty ten Bensel
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Service Providers ◽  
Prison Population ◽  
Correctional Institutions ◽  
Southern State ◽  
Face To Face ◽  
The Past ◽  
Eol Care ◽  
Emotional Effects

The aging prison population has increased dramatically over the past two decades. As this population increases, correctional institutions are faced with health care challenges. Specifically, providing adequate end-of-life (EOL) care for terminally ill inmates has been a concern. Despite issues relating to providing EOL care, little is known about medical and correctional staff’s attitudes toward the implementation of EOL care. The purpose of this study was to understand the challenges faced by correctional and medical professionals, focusing on job satisfaction, obstacles, and emotional effects of providing EOL care in correctional institutions. Our data included 17 semistructured, face-to-face interviews with medical and correctional staff assigned to the EOL care unit in a southern state. Although the entire sample stated overall satisfaction with their job, participants noted several challenges and stressors, which included the lack of resources and difficulties in balancing care. Participants agreed that it was emotionally stressful to maintain appropriate relationships with the inmates, deal with patient manipulation, and be surrounded by dying and death. Implications are discussed relative to the needs and experiences of service providers and how to more effectively treat EOL inmate patients.

scholarly journals Carer experience of end-of-life service provision: a social network analysis

2018 ◽  
Vol 10 (2) ◽  
pp. e20-e20 ◽  
Author(s):  
Rosemary Leonard ◽  
Debbie Horsfall ◽  
John Rosenberg ◽  
Kerrie Noonan
Keyword(s):  
Social Network ◽  
Social Network Analysis ◽  
Network Analysis ◽  
End Of Life ◽  
Service Provision ◽  
End Of Life Care ◽  
Service Providers ◽  
Informal Networks ◽  
Formal Service ◽  
Similar Density

ObjectiveTo identify the position of formal service providers in the networks of those providing end-of-life care in the home from the perspective of the informal network.MethodsUsing third-generation social network analysis, this study examined the nature and strength of relationships of informal caring networks with formal service providers through individual carer interviews, focus groups of caring networks and outer network interviews.ResultsService providers were usually highly valued for providing services, equipment, pain management and personalised care for the dying person plus support and advice to the principal carer about both caring tasks and negotiating the health system. However, formal service providers were positioned as marginal in the caring network. Analysis of the relative density of relationships within networks showed that whereas relationships among family and friends had similar density, relationships between service providers and family or friends were significantly lower.ConclusionThe results supported the Circles of Care model and mirror the perspective of formal service providers identified in previous research. The research raises questions about how formal and informal networks might be better integrated to increase their effectiveness for supporting in-home care.

scholarly journals Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: The caregiver’s perception of patient care near death.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6573-6573
Author(s):  
Philip C Higgins ◽  
Holly Gwen Prigerson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Convergent Validity ◽  
Risk Indicator ◽  
Life Care ◽  
Trauma Symptoms ◽  
Prospective Longitudinal Study ◽  
Eol Care ◽  
Prospective Longitudinal

6573 Background: End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. None include caregiver perception of patient suffering and prolongation of death. We developed and validated the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a more comprehensive measure of caregiver-perceived quality of EOL care. Methods: Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL’s factor structure was examined; reliability was evaluated using Cronbach’s α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results: Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach’s α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (r=.13; p≤.05) and hospice enrollment (z=-2.09; p≤.05), and negatively associated with bereaved caregiver regret (r=-.36, p≤.001) and trauma symptoms (z=-2.06; p≤.05). Conclusions: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver’s perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.

End of life in hospitalised prisoners: a group comparison of palliative medicine and hospital use

2021 ◽  
pp. bmjspcare-2020-002703
Author(s):  
Stacey Panozzo ◽  
Tamsin Bryan ◽  
David Marco ◽  
Anna Collins ◽  
Carrie Lethborg ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
End Of Life Care ◽  
Public Hospital ◽  
Prison Population ◽  
Care Hospital ◽  
Life Care ◽  
Comparator Group ◽  
Population Demographic

BackgroundProviding optimal palliative and end-of-life care for people in prison with advanced progressive disease is a growing challenge. This study aimed to examine hospital and palliative care utilisation for people in prison who are hospitalised during the final 3 months of life and to compare with a disease-matched non-incarcerated patient cohort.MethodsA retrospective cohort study of people in prison who died between 2009 and 2019 in an Australian public hospital that provides tertiary-level healthcare for 18% of Australia’s prison population. Demographic, clinical and service use data were extracted from medical records of eligible patients experiencing incarceration (prison group) and a disease-matched, non-incarcerated patient comparator group (comparator group).ResultsAt the time of death, patients in the prison group were aged a median of 20 years younger than the comparator group (median age 58 vs 78 years, p<0.01). The prison group experienced more than double the mean length of acute care hospital stay at the end of life. A higher proportion of patients in the prison group experienced an intensive care unit episode (22% vs 12%). More than two-thirds (71%) of the prison group patients were seen by palliative care prior to death, similar to the comparator group (p=0.44). Those transferred to the palliative care unit had a shorter length of stay and were admitted later, just prior to death (median 5 vs 8 days).ConclusionsPeople in prison have prolonged acute care public hospital stays and are more likely to experience escalation of care at the end of life. Future opportunity may exist for increased access to formal subacute care settings for people in prison with life-limiting illness to receive optimal palliative and end-of-life care.

Paramedic Knowledge, Attitudes, and Training in End-of-Life Care

2009 ◽  
Vol 24 (6) ◽  
pp. 529-534 ◽  
Author(s):  
Susan C. Stone ◽  
Jean Abbott ◽  
Christian D. McClung ◽  
Chris B. Colwell ◽  
Marc Eckstein ◽  
...  
Keyword(s):  
Los Angeles ◽  
End Of Life ◽  
Life Support ◽  
Clinical Skills ◽  
Chi Square ◽  
Convenience Sample ◽  
Terminal Disease ◽  
The Past ◽  
Almost All ◽  
Eol Care

AbstractIntroduction:Paramedics often are asked to care for patients at the end of life. To do this, they must communicate effectively with family and caregivers, understand their legal obligations, and know when to withhold unwanted interventions. The objectives of this study were to ascertain paramedics' attitudes toward end-of-life (EOL) situations and the frequency with which they encounter them; and to compare paramedics' preparation during training for a variety of EOL care skills.Methods:A written survey was administered to a convenience sample of paramedics in two cities: Denver, Colorado and Los Angeles, California. Questions addressed: (1) attitudes toward EOL decision-making in prehospital settings; (2) experience (number of EOL situations experienced in the past two years); (3) importance of various EOL tasks in clinical practice (pronouncing and communicating death, ending resuscitation, honoring advance directives (ADs)); and (4) self-assessed preparation for these EOL tasks. For each task, importance and preparation were measured using a four-point Likert scale. Proportions were compared using McNemar chi-square statistics to identify areas of under or over-preparation.Results:Two hundred thirty-six paramedics completed the survey. The mean age was 39 years (range 22–59 years), and 222 (94%) were male. Twenty percent had >20 years of experience. Almost all participants (95%; 95% CI = 91–97%) agreed that prehospital providers should honor field ADs, and more than half (59%; 95% CI = 52–65%) felt that providers should honor verbal wishes to limit resuscitation at the scene. Ninety-eight percent of the participants (95% CI = 96–100%) had questioned whether specific life support interventions were appropriate for patients who appeared to have a terminal disease. Twenty-six percent (95% CI = 20–32%) reported to have used their own judgment during the past two years to withhold or end resuscitation in a patient who appeared to have a terminal disease. Significant discrepancies between the importance in practice and the level of preparation during training for the four EOL situations included: (1) understanding ADs (75% very important vs. 40% well prepared; difference 35%: 95% CI = 26–43%); (2) knowing when to honor written ADs (90% very important vs. 59% well-prepared; difference 31%: 95% CI = 23–38%); and (3) verbal ADs (75% very important vs. 54% well-prepared, difference 21%: 95% CI = 12–29%); and (4) communicating death to family or friends (79% very important vs. 48% well prepared, difference 31%: 95% CI = 23–39%). Paramedics' preparation in EOL skills was significantly lower than that for clinical skills such as endotracheal intubation or defibrillation.Conclusions:There is a need to include more training in EOL care into prehospital training curricula, including how to verify and apply ADs, when to withhold treatments, and how to discuss death with victims' family or friends.

scholarly journals Prevalence and characteristics of prisoners requiring end-of-life care: A prospective national survey

2017 ◽  
Vol 32 (1) ◽  
pp. 6-16 ◽  
Author(s):  
Lionel Pazart ◽  
Aurélie Godard-Marceau ◽  
Aline Chassagne ◽  
Aurore Vivot-Pugin ◽  
Elodie Cretin ◽  
...  
Keyword(s):  
Palliative Care ◽  
General Population ◽  
End Of Life ◽  
National Survey ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Prison Population ◽  
Critical Issue ◽  
Life Care ◽  
The Impact

Background: Ensuring adequate end-of-life care for prisoners is a critical issue. In France, data investigating the impact of laws allowing release of seriously ill prisoners are lacking. Aim: To assess the number and characteristics of prisoners requiring palliative care in French prisons. Design: A prospective, national survey collecting data over a 3-month period. Setting/participants: All healthcare units ( n = 190) providing care for prisoners in France. The prison population was 66,698 during the study period. Data collection concerned prisoners requiring end-of-life care, that is, with serious, advanced, progressive, or terminal illness and life expectancy <1 year. Results: Estimated annual prevalence of ill prisoners requiring end-of-life care was 15.2 (confidence interval: 12.5–18.3) per 10,000 prisoners. The observed number of prisoners requiring palliative care ( n = 50) was twice as high as the expected age- and sex-standardized number based on the general population and similar to the expected number among persons 10 years older in the free community. In all, 41 of 44 (93%) of identified ill prisoners were eligible for temporary or permanent compassionate release, according to their practitioner. Only 33 of 48 (68%) of ill prisoners requested suspension or reduction in their sentence on medical grounds; half (16/33) received a positive answer. Conclusion: The proportion of prisoners requiring palliative care is higher than expected in the general population. The general frailty and co-existing conditions of prisoners before incarceration and the acceleration of these phenomena in prison could explain this increase in end-of-life situations among prisoners.

Direct care staff and parents'/legal guardians' perspectives on end-of-life care in a long-term care facility for medically fragile and intellectually disabled pediatric and young adult residents

2012 ◽  
Vol 11 (4) ◽  
pp. 307-314 ◽  
Author(s):  
Richard I. Grossberg ◽  
Martha Blackford ◽  
Sarah Friebert ◽  
Ethan Benore ◽  
Michael D. Reed
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Response Rate ◽  
Care Facility ◽  
Life Care ◽  
Term Care ◽  
Long Term Care Facility ◽  
Legal Guardians ◽  
Eol Care

AbstractObjective:Children and young adults with severe disabilities and their families are faced with enormous challenges throughout the lifespan, including admitting the child to a long-term care facility (LTCF) and making end-of-life (EOL) care decisions. While children are residents of these specialized LTCF, the majority of their daily care, even up until death, is provided by nursing aides or habilitation aides (HAs) with limited training and educational backgrounds compared with other licensed healthcare providers. The purpose of this study was to determine the impact of a resident's EOL experience on the primary HAs and parents/guardians.Method:Thirty-five resident deaths occurred at Hattie Larlham Center for Children with Disabilities (HLCCD) between January 1, 2006 and February 28, 2009. The HAs and parents/legal guardians were identified for each death and invited to complete three surveys per resident (FAMCARE, Impact of Events Scale (IES)-revised, and Perspective on End-of-Life Care) to assess their experience. There were 112 surveys mailed to 62 HAs and 47 surveys mailed to 47 parents.Results:Forty-two surveys were returned from 18/62 HAs (response rate 29%) and 11/47 parents/legal guardians completed the surveys (response rate 23%). The FAMCARE survey found that parents were more satisfied with the EOL care than were the HAs. The IES-revised found no difference in traumatic responses from either group. Comments from the Perspective on End-of-Life Care survey were analyzed qualitatively for common themes including pain control, respect, decision making, environmental needs, resources, and support.Significance of results:Because of a low response rate, it was difficult to draw significant conclusions; however, several interesting trends were noted regarding the number of deaths HAs experienced, satisfaction with care, and distress. The special needs of this population and their caregivers can provide crucial insights into interventions (e.g. chaplaincy support, debriefings, anticipatory counseling, environmental changes) that might be of benefit for any caregiver or parent of a child with a long-term, chronic condition, particularly involving developmental disability.

scholarly journals Health Care Professionals’ Views Associated with the Barriers and Facilitators of Advance Care Planning (ACP) for Community Dwelling Older Adults with Palliative and End-of-Life Care Needs Towards Achieving a ‘Good’ Death: Findings from a Qualitative, Exploratory Pilot Study

2018 ◽  
Author(s):  
Gary Bellamy ◽  
Jennifer Stock ◽  
Patricia Schofield
Keyword(s):  
Older Adults ◽  
Health Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Face To Face ◽  
Telephone Interviews ◽  
Advance Care

This paper reports the findings from a pilot study designed to explore the barriers, facilitators and similarities with the delivery and implementation of two distinct models of Advance Care Planning (ACP) documentation for older adults in their last year of life used by health care professionals in their clinical practice. PACe (Proactive Anticipatory Care Plan): a GP led model and PEACE (Proactive Elderly Persons&rsquo; Advisory CarE): a nurse led model with community geriatrician oversight were used by participants in their clinical practice. Telephone interviews were conducted with general practitioners (GPs) to explore their views of using the PACe tool. Hospital admission avoidance matrons took part in face to face interviews and care staff employed in private residential care homes took part in individual telephone interviews to explore their views of using the PEACE tool. GPs and admission avoidance matrons were employed by Clinical Commissioning Groups (CCGs) and all study participants were recruited from the South East of England where data collection took place in 2015. Nine telephone interviews and two face-to-face interviews (one joint and one individual) were conducted with twelve participants. The data was analysed thematically. Participants highlighted the similarity of both tools in providing focus to ACP discussions to inform individual end-of-life care preferences. The importance of relationships was a pivotal theme-established, trusting inter-professional relationships to enable multidisciplinary teamwork and a prior relationship with the older person (or their proxy in the case of cognitive impairment) to enable conversations of this nature. Using both tools enabled participants to think critically and reflect on their own practice was another theme identified. Notwithstanding participants&rsquo; views to improve the layout of both tools, using a paper-based approach to deliver streamlined ACP and end-of-life care was a theme to emerge as a barrier which focused on the problems with access to paper-based documentation, accuracy and care co-ordination in the context of multidisciplinary team working. The value of technology in overcoming this barrier and underpin ACP as a means to help simplify service provision, promote integrated professional practice and provide seamless care was put forward as the solution.

scholarly journals Spiritual Care at The End Of Life: Western Views and Islamic Perspectives

2018 ◽  
Vol 2 (2) ◽  
pp. 65
Author(s):  
Wafa ‘a Qasem Ahmad
Keyword(s):  
Patient Care ◽  
End Of Life ◽  
Spiritual Care ◽  
End Of Life Care ◽  
Human Life ◽  
Death And Dying ◽  
The Past ◽  
Education Of Patients ◽  
Core Components ◽  
The Uk

The concept of spiritual and religious care, as core components of palliative care for patients at end of life stages, has achieved significant organized applications and advances in modes of intervention and tools. The past two decades have witnessed waves of secularization with impacts of the concepts of spirituality and chaplaincy that diverged away from religion, more so in the UK and some European countries as compared to US applications. Spirituality became more generic and broad that revealed itself in helping and education of patients and families to earth and think of meaning and purpose of life, suffering death and dying. The issues of spirituality and religiosity in the Islamic culture, teachings and attitudes towards patient care at terminal stages of life, is distinguished by clarity and harmony in view of clarity of Muslim beliefs and interpretations concerning purpose, meaning and mission of human life on this earth, end-of-life care and the afterlife. This paper will address the contemporary western diverse concepts of spirituality, its relationship with religiosity in terminal patient care, and will elaborate on the holistic Islamic views and attitudes towards this stage of human life.International Journal of Human and Health Sciences Vol. 02 No. 02 April’18. Page : 65-70

Using cancer registry records linked with health insurance records to measure costs and services at end-of-life.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 186-186 ◽  
Author(s):  
Karma L. Kreizenbeck ◽  
Catherine R. Fedorenko ◽  
Kristine Stickney ◽  
Cara L McDermott ◽  
Ted Conklin ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Tumor Patients ◽  
Factors Associated ◽  
Western Washington ◽  
The Difference ◽  
Eol Care ◽  
Out Of Pocket Costs

186 Background: Studies suggest that end-of-life (EOL) care for persons with cancer in the United States is variable and often misaligned with patient and family preferences. To better understand these issues, we developed reports on high-priority quality indicators and costs at EOL. Methods: Surveillance, Epidemiology, and End Results (SEER) records for solid tumor patients diagnosed with cancer in Western Washington state between 1/1/2007 and 12/31/2015 were linked with enrollment and claims from two regional commercial insurers. Using claims, we then developed algorithms to characterize EOL care for breast, colorectal, and non-small cell lung cancer (NSCLC), including costs of care at 90- and 30-days prior to death. Costs include all claims paid for ED, hospital, outpatient, and pharmacy care. We estimated patient out-of-pocket costs as the difference between allowed and paid claim amounts. Results: See Table. Across the largest 10 clinics in the region there was considerable variability in the average costs of cancer care in the last 90 days of life. The clinic-specific average ranged from $24,532 to $72,931 for breast cancer, $30,495 to $65,975 for colorectal cancer and $23,320 to $59,641 for NSCLC. Conclusions: At the end of life, care for patients with advanced breast, lung, and colorectal cancer is highly variable, costly to patients, and may be misaligned with the goals and preferences for patients and their family members. While the results may reflect both appropriate and unnecessary care, the large variation across clinics suggests opportunities for improvement. Further research is needed to identify factors associated with use of low-value, high-cost services at the end of life. [Table: see text]

End-of-Life Care in Acute Care Hospitals in Canada: A Quality Finish?

2005 ◽  
Vol 21 (3) ◽  
pp. 142-150 ◽  
Author(s):  
Daren K. Heyland ◽  
Dianne Groll ◽  
Graeme Rocker ◽  
Peter Dodek ◽  
Amiram Gafni ◽  
...  
Keyword(s):  
End Of Life ◽  
Discharge Planning ◽  
Metastatic Cancer ◽  
Symptom Relief ◽  
Tertiary Care ◽  
Family Members ◽  
Medical Patients ◽  
Face To Face ◽  
Care Improvement ◽  
Eol Care

Understanding patients’ and family members’ perspectives on the relative importance of elements of end-of-life (EOL) care and their satisfaction with those elements will help prioritize quality improvement initiatives. We administered a face-to-face questionnaire containing a selection of 28 elements of care to eligible in patients with advanced lung, heart, or liver disease, or metastatic cancer, and available family caregivers (FCGs) in five tertiary care hospitals across Canada. 440 of 569 (78%) eligible patients and 160 of 176 (91%) FCGs participated. No respondent reported complete satisfaction with all elements of care. The average satisfaction score was 4.6 on a 26 point scale. Medical patients reported lower levels of satisfaction than cancer patients. Elements rated as “extremely important” and anything other than “completely satisfied” most frequently by respondents related to discharge planning, availability of home health services, symptom relief, not being a burden, physician trust, and communication. In conclusion, most patients and their family members in our survey were not completely satisfied with EOL care. Improvement initiatives to target key elements identified by patients and FCGs have the potential to improve satisfaction with EOL care across care settings.

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