Care at the end of life during the COVID-19 pandemic: A CancerLinQ Discovery (CLQD) analysis.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 310-310
Author(s):  
Gabrielle Betty Rocque ◽  
Mark Riffon ◽  
Electra D. Paskett ◽  
Abdul-Rahman Jazieh ◽  
Jennifer C. King ◽  
...  
Keyword(s):  
End Of Life ◽  
Care Delivery ◽  
Geographic Region ◽  
Outpatient Services ◽  
Patients With Cancer ◽  
Clinical Encounters ◽  
Hispanic Patients ◽  
Vulnerable Patient ◽  
Eol Care

310 Background: For patients with cancer approaching end-of-life (EOL) during the COVID-19 pandemic, the changes in service availability and transition to telehealth may impact care delivery. Little is known about how the COVID-19 pandemic impacted EOL encounters with the healthcare system, particularly for vulnerable patient populations. Methods: This retrospective cohort study included patients with cancer who died from 1/2019-9/2020 in the CLQD electronic health record-based dataset. Descriptive statistics were generated for demographic characteristics and for clinical encounters (telehealth/in person/no encounter) in the last 3 months of life (EOL) among patients deceased in the year. Results were stratified by age, race, ethnicity, and geographic region. Results: Among the 49,688 deceased patients, 27% were under 65, 29% were 65-74, and 44% were 75+. The majority were Non-Hispanic White, with 5% Hispanic, 12% Black. In 2020, patients who were age 75+, White, Non-Hispanic, and/or living in the Midwest or Northeast had lower rates of in person encounters and higher rates of no encounter at EOL than those <65, Black, Hispanic, and/or living in the South (Table). Telehealth use at EOL increased from 2019 to 2020, with highest use amongst those in the West and Hispanic patients (Table). Conclusions: During the pandemic, telehealth use was limited at EOL compared to the 14% reported use for all cancer patients (data not shown). Black and Hispanic patients had slightly higher provider encounters at EOL, which may be due to differences in intensity of EOL care or death capture within the database. Further research is needed to evaluate the quality of EOL care and to assess opportunities to leverage telehealth where patients are unable to access outpatient services.[Table: see text]

scholarly journals Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives

2021 ◽  
Vol 19 (5) ◽  
pp. 528-533
Author(s):  
Jennifer W. Mack ◽  
Erin R. Currie ◽  
Vincent Martello ◽  
Jordan Gittzus ◽  
Asisa Isack ◽  
...  
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Emotional Support ◽  
Poor Prognosis ◽  
Care Delivery ◽  
Qualitative Interviews ◽  
Adolescents And Young Adults ◽  
Eol Care

Background: Adolescents and young adults (AYAs; aged 15–39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. Methods: We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. Results: Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. Conclusions: Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.

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.

scholarly journals Family Perspectives on Hospice Care Experiences of Patients with Cancer

2017 ◽  
Vol 35 (4) ◽  
pp. 432-439 ◽  
Author(s):  
Pallavi Kumar ◽  
Alexi A. Wright ◽  
Laura A. Hatfield ◽  
Jennifer S. Temel ◽  
Nancy L. Keating
Keyword(s):  
Propensity Score ◽  
Goal Attainment ◽  
Hospice Care ◽  
Symptom Relief ◽  
Patients With Cancer ◽  
Percentage Points ◽  
The Right ◽  
Hospice Use ◽  
Eol Care

Purpose To determine whether hospice use by patients with cancer is associated with their families’ perceptions of patients’ symptoms, goal attainment, and quality of end-of-life (EOL) care. Methods We interviewed 2,307 families of deceased patients with advanced lung or colorectal cancer who were enrolled in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study) and died by 2011. We used propensity-score matching to compare family-reported outcomes for patients who did and did not receive hospice care, including the presence and relief of common symptoms (ie, pain, dyspnea), concordance with patients’ wishes for EOL care and place of death, and quality of EOL care. We also examined associations between hospice length of stay and these outcomes among hospice enrollees. Results In a propensity-score-matched sample of 1,970 individuals, families of patients enrolled in hospice reported more pain in their patient compared with those not enrolled in hospice. However, families of patients enrolled in hospice more often reported that patients received “just the right amount” of pain medicine (80% v 73%; adjusted difference, 7 percentage points; 95% confidence interval [CI], 1 to 12 percentage points) and help with dyspnea (78% v 70%; adjusted difference, 8 percentage points; 95% CI, 2 to 13 percentage points). Families of patients enrolled in hospice also more often reported that patients’ EOL wishes were followed (80% v 74%; adjusted difference, 6 percentage points; 95% CI, 2 to 11 percentage points) and “excellent” quality EOL care (57% v 42%; adjusted difference, 15 percentage points; 95% CI, 11 to 20). Families of patients who received > 30 days of hospice care reported the highest quality EOL outcomes. Conclusion Hospice care is associated with better symptom relief, patient-goal attainment, and quality of EOL care. Encouraging earlier and increased hospice enrollment may improve EOL experiences for patients with cancer and their families.

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.

Meaning-Centered Psychotherapy

2021 ◽  
pp. 489-494
Author(s):  
Melissa Masterson Duva ◽  
Wendy G. Lichtenthal ◽  
Allison J. Applebaum ◽  
William S. Breitbart
Keyword(s):  
End Of Life ◽  
Advanced Cancer ◽  
Psychosocial Care ◽  
Well Being ◽  
Cancer Center ◽  
Existential Psychology ◽  
Patients With Cancer ◽  
Spiritual Well Being ◽  
The Face

Existential concerns carry significant distress, particularly among patients with advanced cancer. For patients who are facing death, a sense of meaning—and the preservation of that meaning—is not only clinically and existentially important but also central to providing holistic, high-quality end-of-life care. Nearly two decades ago, the authors’ research group at Memorial Sloan Kettering Cancer Center began to understand that a meaning-centered approach to psychosocial care was imperative to alleviate the existential distress that plagued many patients with advanced cancer. Based on Viktor Frankl’s work on the importance of meaning and principles of existential psychology and philosophy, they developed Meaning-Centered Psychotherapy (MCP) to help patients with advanced cancer sustain or enhance a sense of meaning, peace, and purpose in their lives in the face of terminal cancer. This chapter provides an overview of MCP in working with patients with cancer. It summarizes the ever-growing body of research that has demonstrated the effectiveness of MCP in improving meaning, spiritual well-being, and quality of life and in reducing psychological distress and despair at end of life. Adaptations of MCP for other purposes and populations, such as cancer survivors, caregivers, and bereavement, are mentioned but are elaborated on in other specific chapters related to these issues in this textbook.

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.

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.

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