scholarly journals Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mina Motamedi ◽  
Caitlin Brandenburg ◽  
Mina Bakhit ◽  
Zoe A. Michaleff ◽  
Loai Albarqouni ◽  
...  
Keyword(s):  
End Of Life ◽  
Older Patients ◽  
Informal Caregivers ◽  
Secondary Analysis ◽  
Healthcare Services ◽  
Care Quality ◽  
Primary Analysis ◽  
Provider Perspectives ◽  
Eol Care

Abstract Background Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements. Methods Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis). Results Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework. Conclusion The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL.

Retrospective review of end-of-life care in the last month of life in older patients with multiple myeloma: what collaboration between haematologists and palliative care teams?

2020 ◽  
pp. bmjspcare-2020-002293
Author(s):  
Thomas Chalopin ◽  
Nicolas Vallet ◽  
Lotfi Benboubker ◽  
Marlène Ochmann ◽  
Emmanuel Gyan ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Palliative Care ◽  
End Of Life ◽  
Older Patients ◽  
High Rate ◽  
Palliative Care Teams ◽  
Care Family ◽  
Eol Care

ObjectivesPatients with haematological malignancies (HM) receive more aggressive treatments near the end-of-life (EOL) than patients with solid tumours. Palliative care (PC) needs are less widely acknowledged in patients with multiple myeloma (MM) than in other HM. The main objective of our study was to describe EOL care and PC referral in a population of older patients with MM.MethodsWe retrospectively included deceased inpatients and outpatients with an MM previously diagnosed at the age of 70 and over in two tertiary centres in France. We reported EOL characteristics regarding treatments considered to be aggressive—antimyeloma therapies, hospitalisations, blood product transfusions, intensive care units (ICUs) or emergency admissions—and PC referral.ResultsWe included 119 patients. In their last month of life, 75 (63%) were hospitalised for fever, pain, asthenia, anaemia or bleeding, 49 (41%) were admitted in the emergency department and 12 (10%) in ICU, 76 (64%) still received antimyeloma therapy and 45 (38%) had at least two transfusions. Only 24 (20%) received PC intervention for pain, global care, family support, anxiety, social care or confusion. Median follow-up until death was 20 days.ConclusionsOur study found a high rate of hospitalisations and antimyeloma therapies in the last month of life. The PC referral rate was low, often once specific treatments were stopped. Our results suggest the need for more effective collaboration between PC teams and haematologists in order to respond to the specific needs of these patients and to improve their quality of care at EOL.

Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer

2021 ◽  
pp. 082585972110019
Author(s):  
Erin R. Currie ◽  
Emily E. Johnston ◽  
Marie Bakitas ◽  
Eric Roeland ◽  
Lisa C Lindley ◽  
...  
Keyword(s):  
End Of Life ◽  
Care Quality ◽  
Adolescent And Young Adult ◽  
Special Focus ◽  
Cross Sectional ◽  
Medical Centers ◽  
Academic Medical ◽  
Bereaved Family ◽  
Eol Care

Background: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. Objective: To describe caregivers of AYA cancer decedents perspectives’ on EOL care quality related to EOL care communication. Design: Cross-sectional observational study. Setting/Subjects: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. Measurements: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. Results: Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. Conclusions: Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.

End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care

Blood ◽  
2010 ◽  
Vol 115 (19) ◽  
pp. 3879-3885 ◽  
Author(s):  
Christina K. Ullrich ◽  
Veronica Dussel ◽  
Joanne M. Hilden ◽  
Jan W. Sheaffer ◽  
Leslie Lehmann ◽  
...  
Keyword(s):  
Stem Cell ◽  
Cancer Therapy ◽  
Stem Cell Transplantation ◽  
End Of Life ◽  
Cell Transplantation ◽  
Life Experience ◽  
Additional Information ◽  
Provider Perspectives ◽  
Eol Care

Abstract The end-of-life (EOL) experience of children who undergo stem cell transplantation (SCT) may differ from that of other children with cancer. To evaluate perspectives and patterns of EOL care after SCT, we surveyed 141 parents of children who died of cancer (response rate, 64%) and their physicians. Chart review provided additional information. Children for whom SCT was the last cancer therapy (n = 31) were compared with those for whom it was not (n = 110). SCT parents and physicians recognized no realistic chance for cure later than non-SCT peers (both P < .001) and were more likely to have a primary goal of cure at death (parents, P < .001; physicians, P = .02). SCT children were more likely to suffer highly from their last cancer therapy and die in the intensive care unit (both P < .001), with less opportunity for EOL preparation. SCT parents who recognized no realistic chance for cure more than 7 days before death along with the physician were more likely to prepare for EOL, and if their primary goal was to reduce suffering, to achieve this (P < .001). SCT is associated with significant suffering and less opportunity to prepare for EOL. Children and families undergoing SCT may benefit from ongoing discussions regarding prognosis, goals, and opportunities to maximize quality of life.

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.

Quality Improvement Initiatives to Reduce Mortality: An Opportunity to Engage Palliative Care and Improve Advance Care Planning

2018 ◽  
Vol 36 (2) ◽  
pp. 97-104 ◽  
Author(s):  
Signe Peterson Flieger ◽  
Erica Spatz ◽  
Emily J. Cherlin ◽  
Leslie A. Curry
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
End Of Life ◽  
Advance Care Planning ◽  
Secondary Analysis ◽  
Care Quality ◽  
Care Planning ◽  
Goals Of Care ◽  
Patient Goals ◽  
Advance Care

Background: Despite substantial efforts to integrate palliative care and improve advance care planning, both are underutilized. Quality improvement initiatives focused on reducing mortality may offer an opportunity for facilitating engagement with palliative care and advance care planning. Objective: In the context of an initiative to reduce acute myocardial infarction (AMI) mortality, we examined challenges and opportunities for engaging palliative care and improving advance care planning. Methods: We performed a secondary analysis of qualitative data collected through the Leadership Saves Lives initiative between 2014 and 2016. Data included in-depth interviews with hospital executives, clinicians, administrators, and quality improvement staff (n = 28) from 5 hospitals participating in the Mayo Clinic Care Network. Focused analysis examined emergent themes related to end-of-life experiences, including palliative care and advance care planning. Results: Participants described challenges related to palliative care and advance care planning in the AMI context, including intervention decisions during an acute event, delivering care aligned with patient and family preferences, and the culture around palliative care and hospice. Participants proposed strategies for addressing such challenges in the context of improving AMI quality outcomes. Conclusions: Clinicians who participated in an initiative to reduce AMI mortality highlighted the challenges associated with decision-making regarding interventions, systems for documenting patient goals of care, and broader engagement with palliative care. Quality improvement initiatives focused on mortality may offer a meaningful and feasible opportunity for engaging palliative care. Primary palliative care training is needed to improve discussions about patient and family goals of care near the end of life.

Chemotherapy at the end of life: Do we know when to stop?

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24005-e24005
Author(s):  
Renana Barak ◽  
Einav Zagagi Yohay ◽  
Barliz Waissengrin ◽  
Ido Wolf
Keyword(s):  
End Of Life ◽  
Disease Duration ◽  
Performance Status ◽  
Poor Quality ◽  
Palliative Intent ◽  
Care Services ◽  
Palliative Care Services ◽  
Eol Care ◽  
Oncologic Treatment

e24005 Background: Aggressive end-of-life (EOL) care in cancer patients, especially the administration of chemotherapy, is considered a poor-quality measure, that may divert the treatment course from its' main palliative intent. Decisions taken at EOL are more than evidence-based and often rely on cultural and personal prospects. The universal and free Israeli health care system enables the administration of active treatment without financial or regulatory barriers, even at EOL. Two major advancements in recent years were the implementation of national at-home palliative care services and the approval of targeted and immunotherapies for advanced cancers. We hypothesized that these changes will reduce the use of chemotherapy at EOL. Methods: We sampled consecutive patients treated at a tertiary oncology center who died of advanced cancers between January 2019 to August 2020, and examined the administration of oncologic treatments near EOL. Results: A total of 294 patients were included. Their median age was 67 and 147 were men, 64% (189) of the patients received oncologic treatment during the last month before death, chemotherapy was administered in nearly two-thirds of the cases, 64% (121), followed by immunotherapy (21%, 40), targeted therapy (10%, 19) and a clinical trial (5%, 9). Neither age (P = 0.4), gender (P = 0.9), performance status (P = 0.8), disease duration (P = 0.5), and type of previous oncologic treatment (P = 0.3) were associated with aggressive EOL care. Conclusions: Our data demonstrate that in the absence of any regulatory or financial limitations, an aggressive EOL care may be administered to the majority of patients, regardless of age, performance status or disease duration. Despite increasing use of immunotherapy and targeted therapies and despite its’ toxicity profile and low beneficial effect at this stage, chemotherapy remained the most commonly used type of treatment. These data call for the implementation of educational measures and appropriate universal guidelines, aiming at improving quality of treatment at the EOL, focusing on quality of life rather than the elusive potential of extending life.

Call the Rezadora: Aiding Latino Families at the End of Life

2021 ◽  
pp. 154041532110289
Author(s):  
Kim L. Larson ◽  
Graziella D. Jewell ◽  
Maria Fernanda Maldonado ◽  
Morgan E. Braxton ◽  
Lee Ann Johnson
Keyword(s):  
End Of Life ◽  
Single Case ◽  
The United States ◽  
Latino Families ◽  
Holistic View ◽  
Serious Illness ◽  
Care Services ◽  
Palliative Care Teams ◽  
Eol Care

Introduction: The rezadora, a lay spiritual leader, provides support to Latino families as they provide end-of-life (EOL) care for loved ones. The purpose of this study was to learn about the work of the rezadora in Guatemala as a resource for Latinos with serious illness in the United States. Methods: An ethnographic exploratory case study was conducted during summer 2018 in rural Guatemala. We interviewed three rezadoras who resided in two villages. The study yielded two cases, the single case and the paired case, which allowed for a holistic view of how the rezadora serves the community. Results: Content and thematic analysis led to two themes: Essence of being called and Power of prayerful song. Essence of being called was represented by the prominence of the rezadora and their perpetual faith work. Power of prayerful song was characterized through the mission, customs, and the presence of the rezadora. A good death was aided by the rezadora in this context. Conclusions: As the Latino population ages in place, the need for palliative and EOL care services will increase. Lay spiritual leaders could enhance the palliative care teams in these communities and improve the quality of life for Latinos with serious illness.

Improving the Quality of Care across All Settings

2019 ◽  
pp. 573-605
Author(s):  
Marilyn Bookbinder ◽  
Romina Arceo ◽  
James T. McDaniel
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
The United States ◽  
Healthcare Settings ◽  
National Priority ◽  
Hospice And Palliative Care ◽  
Eol Care ◽  
Clinician Assessment ◽  
Care Path

This chapter provides perspectives on quality-based initiatives in the United States across healthcare settings and populations and describes their impact on patient, professional, and system outcomes. The authors discuss the need for quality improvement (QI) at end of life, QI principles, and the models, methods, and tools most frequently used. Also described are areas of national priority for improving end-of-life (EOL) care. A care-path for the end of life is used to illustrate a QI effort and the FOCUS_PDSA method and to encourage use of specific tools for improving EOL care, including respiratory distress, and a clinician assessment of EOL care using The Joint Commission (TJC) tracer methodology. The authors review the linkages between QI and practice changes in hospitals and hospices that ultimately lead to improved EOL care and close with examples of how nurses are providing leadership in the field of quality hospice and palliative care.

Exploring caregivers' perspectives on improving care for older people at the end of life in Thailand

2019 ◽  
Vol 25 (7) ◽  
pp. 326-332
Author(s):  
Kanyanat Supaporn ◽  
Sang-arun Isaramalai ◽  
Wandee Suttharangsee
Keyword(s):  
Quality Of Care ◽  
Older People ◽  
End Of Life ◽  
Care Quality ◽  
Ageing Population ◽  
Home Setting ◽  
Experience Of Care ◽  
Care Recipients ◽  
Care For Older People

Background: Older people in Thailand receive general medical and social care at the end of life, and many rarely access palliative services. In light of this, improving the quality of care for the ageing population relies on addressing the needs of family caregivers, who provide the majority of care in a home setting. Understanding caregivers' perspectives when caring for a friend or relative will help to improve the quality of care that they provide. Aim: To explore caregivers' perspectives on improving care for older people in Thailand in the palliative stage. Methods: A qualitative study using in-depth interviews and observation of 10 older people in the palliative stage and their caregivers was undertaken. Data were analysed using content analysis. Findings: Data analysis revealed three themes: caregivers cared to repay the older person's previous kindness, caregivers cared and changed their caregiving behaviour to minimise the older person's perception of being abandoned or being a burden, and to follow Thai ancestral traditions, so that the older person could die peacefully. Conclusion: This study provides specific instructions for those who provide care for older Thai people in the palliative stage. Finding ways to address caregivers' perspectives on improving care quality could enhance the experience of care recipients.

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