scholarly journals Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Jose A Calvache ◽  
Socorro Moreno ◽  
Gillian Prue ◽  
Joanne Reid ◽  
Sam H Ahmedzai ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Teaching Hospitals ◽  
Medical Team ◽  
Online Questionnaire ◽  
Advance Care ◽  
Absolute Agreement ◽  
Advance Care Directive ◽  
Eol Care

Abstract Objectives To describe communication regarding cancer patient’s end-of-life (EoL) wishes by physicians and family caregivers. Methods An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was “clearly the best for the patient” or that it was “not necessary to discuss treatment with the patient”. Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). Conclusions There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.

scholarly journals Knowledge of End-of-life Wishes by Physicians and Caregivers in Cancer Patients

2021 ◽  
Author(s):  
Jose A Calvache ◽  
Socorro Moreno ◽  
Gillian Prue ◽  
Joanne Reid ◽  
Sam Ahmedzai ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Communication Strategies ◽  
Teaching Hospitals ◽  
Medical Team ◽  
Online Questionnaire ◽  
Advance Care ◽  
Absolute Agreement ◽  
Advance Care Directive ◽  
Eol Care

Abstract Objectives: To describe communication regarding cancer patient’s end-of-life (EoL) wishes by physicians and caregivers.Methods: An online questionnaire and telephone-based surveys were performed with physicians and caregivers respectively in three teaching hospitals in Colombia who had been involved in the EoL care of cancer patients. Results: For 138 deceased patients we obtained responses from physicians and caregivers. In 32% physicians reported they spoke to the caregiver and in 17% with the patient regarding EoL decisions. In most cases with absence of a conversation, physicians indicated the treatment option was “clearly the best for the patient” or that it was “not necessary to discuss treatment with the patient”.Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and caregivers were unaware if the patient had any advance care directive (ACD) in 65% and 51% of cases, respectively, with a very low absolute agreement (34%).Conclusion: There is a lack of open conversations regarding EoL in patients with advanced cancer with their physicians and caregivers in Colombia. Communication strategies are urgently needed.

Helping cancer-family caregivers with end-of-life home symptom management: Initial evaluation of an automated symptom monitoring and coaching system.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 85-85 ◽  
Author(s):  
Kathi Mooney ◽  
Patricia Berry ◽  
Bob Wong ◽  
Gary Donaldson
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Monitoring System ◽  
Symptom Severity ◽  
Preliminary Evidence ◽  
Symptom Monitoring ◽  
Cancer Family ◽  
Symptom Profile ◽  
Eol Care

85 Background: Family caregivers face the task of providing end of life care (EOL) in the home setting and need effective caregiving support. Although not previously tested in EOL care, automated symptom monitoring has shown promise for cancer patients on active treatment. This study tests an automated monitoring and coaching system for family caregivers during home hospice. Methods: Family Caregivers (FC) of hospice cancer patients (PT) (N=243 dyads) were monitored daily using an automated telephone symptom monitoring system, and randomly assigned to receive the symptom care intervention (SC) (N=119) or usual care (UC) (N=124). All FCs called the monitoring system daily, reporting by proxy, past 24 hour presence, severity and FC distress on 11 common PT symptoms (0–10 scale). In addition, FCs reported their own fatigue, sleep, mood and anxiety severity (0-10 scale). The SC intervention FCs received automated tailored symptom care coaching based on reported patterns; in addition symptoms moderate or greater generated alerts to their hospice nurse. Results: Most FCs and PTs were White (95; 94%), 66% of FCs and 48% of PTs were female with the Mean age for FCs 60 and 73 for PTs. Most frequent PT symptoms were fatigue (70%), pain (64%), poor appetite (54%), anxiety (39%), and change in thinking (38%). PT symptom severity levels were highly related to FC distress. Preliminary analyses indicates that FC vitality (FC combined symptoms) improved more in the SC group (p=.003, mixed effects model). Furthermore PT symptom severity, categorized as Mild (<=3), Moderate (4-6), or Severe (>=7), provided strong preliminary evidence of SC intervention benefit in each of the first four weeks in hospice care and overall (p=.003). Rapid onset of the SC benefit was suggested by Kaplan-Meier analysis of time to first all-zero symptom profile (p=.06 log-rank). The benefit of the SC intervention continued throughout the hospice stay until the last several days of life when there was no difference with UC. Conclusions: This is the first reported evaluation of automated symptom monitoring in home EOL care and provides strong preliminary evidence of benefit for cancer family caregivers and patients. Clinical trial information: NCT02112461.

scholarly journals Caregiver perceptions of end-of-life care in patients with high-grade glioma

2020 ◽  
Vol 8 (2) ◽  
pp. 171-178
Author(s):  
John T Fortunato ◽  
Meredith Van Harn ◽  
Sameah A Haider ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Care Planning ◽  
High Grade ◽  
Life Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract Background Patients dying from high-grade gliomas (HGG) suffer from high symptom burden in the end-of-life (EoL) phase. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess caregiver perception on quality of EoL care of HGG patients. Methods Caregivers prospectively participated in the Toolkit After-Death Bereaved Family Member Interview, part of the Toolkit of Instruments to Measure End-of-Life Care (TIME survey). This validated survey assesses EoL care in areas such as physical comfort and emotional support, advance care planning, focus on the individual, attention to family, and coordination of care. The quality of EoL care was measured by domain scores (0 = care was always optimal, 1 = care was always suboptimal) or with a 0-10 scale. Results Of the 55 enrolled family caregivers, 44 completed the interview and rated the overall care high (8.90 ± 1.36/10), perceived that patients’ wishes were respected (9.46 ± 0.95) and that they died in dignity (9.65 ± 0.98). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16), and care coordination (0.11). Attention to family (0.25) needed improvement. Only 41% of caregivers were confident that they knew what to do at the time of death and 46% felt that the healthcare team did not provide them with someone to turn to in distress. Conclusions Caregivers reported high overall satisfaction with EoL HGG care, though attention to family and communication needed improvement. Focus should therefore be on improved caregiver communication to improve EoL care, caregiver burnout, and bereavement in HGG populations.

scholarly journals QOLP-14. CAREGIVER PERCEPTIONS OF END OF LIFE CARE IN PATIENTS WITH HIGH GRADE GLIOMA

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi200-vi200
Author(s):  
John Fortunato ◽  
Lonni Schultz ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
High Grade ◽  
Life Care ◽  
Coordination Of Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract INTRODUCTION Patients dying from high-grade gliomas (HGG) often suffer from a high symptom burden in the end-of-life (EoL) phase. Since patients with HGG typically do not follow up with providers in the EoL phase, information about quality of life and symptom management is sparse. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess the quality of EoL care of HGG patients from the caregiver perspective. METHODS Caregivers participated in the Toolkit After-Death Bereaved Family Member Interview (TIME survey). This validated survey assesses EoL care by calculating “domain scores” (DS) in five different areas: 1) physical comfort and emotional support, 2) advance care planning, 3) focus on the individual, 4) attention to family, and 5) coordination of care. Caregivers also rated aspects of care using a 10 point Likert scale. RESULTS In a prospective study, 40 of 55 enrolled family caregivers completed the interview a median of 26 days after death. 68% of caregivers were female. DS indicate the quality of care. (0 = no opportunity to improve care, 1 = care was always sub-optimal). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16) and coordination of care (0.11). Attention to family (0.25) was not as well rated. Caregivers rated the overall care 8.90 ±1.36/10 on a 0–10 scale. CONCLUSIONS Caregivers reported a high overall satisfaction with EoL care provided, though attention to family could be improved. While previous research suggests the importance of good physician communication in allowing patients to die with dignity, more focus should be on the caregiver in the EoL phase to improve end of life care, caregiver burnout and bereavement.

scholarly journals Family Caregivers' Feelings of Preparedness for the Transition to End-Of-Life Caregiving

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 816-817
Author(s):  
Aimee Fox ◽  
Julia Sharp ◽  
Christine Fruhauf
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Family Members ◽  
Well Being ◽  
Community Services ◽  
Self Report ◽  
Factors Associated ◽  
Perceived Burden ◽  
Advance Care ◽  
Eol Care

Abstract Family caregivers are vulnerable to emotional, psychological, physical, and financial stress during their care receiver’s end-of-life (EOL), and often do not have the knowledge or skills to provide the care needed at EOL. Yet, few studies have examined how prepared caregivers feel for making the transition to EOL care. The purpose of this exploratory study was to investigate how family caregivers perceive their preparedness for the transition to providing EOL care, and factors that may be associated with feelings of preparedness. Family caregivers (N = 252) providing care to an adult family member for more than six months were recruited to complete an online, self-report survey. An exploratory factor analysis was conducted to break down the construct of caregiver preparedness. One-way ANOVAs and a multiple regression were conducted to examine factors associated with preparedness. Most caregivers feel less prepared for the transition to EOL care (M = 2.67, SD = 1.17) than for general caregiving responsibilities (M = 3.42, SD = 0.90). Factors associated with preparedness for EOL caregiving included the familial relationship between the family caregiver and care receiver, hours per week providing care, perceived burden of caregiving, and family conversations completed about advance care planning, legal and financial matters, and EOL wishes. Future studies should explore how to help family caregivers recognize the importance of seeking support from family members and community services and discussing EOL care wishes and plans with aging family members so they can provide effective care and protect their own well-being.

scholarly journals The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

Cancers ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 1977
Author(s):  
Francesca Falzarano ◽  
Holly G. Prigerson ◽  
Paul K. Maciejewski
Keyword(s):  
Cancer Patients ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Care Planning ◽  
Do Not Resuscitate ◽  
Prospective Longitudinal Study ◽  
Advance Care ◽  
Grief Resolution ◽  
Caregiver Grief ◽  
Prospective Longitudinal

Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

Death attitudes and truth disclosure: A survey of family caregivers of elders with terminal cancer in China

2018 ◽  
Vol 26 (7-8) ◽  
pp. 1968-1975 ◽  
Author(s):  
Yong Tang
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Quantitative Method ◽  
Bad News ◽  
Background Information ◽  
Terminal Cancer ◽  
Death Attitudes ◽  
Truth Disclosure ◽  
Primary Family

Background: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life. Objective: The objective was to describe family caregivers’ attitudes toward death, hospice, and truth disclosure. Research design: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at a hospice center from April to August 2017. Participants: 140 primary family caregivers of elders with terminal cancer participated the study. Research Context: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers’ inhibitions about disclosing information to cancer patients have not yet been the objects of research in China. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China. Findings: A questionnaire survey collected information on family caregivers’ background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers’ death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer. Discussion: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers’ attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure. Conclusion: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers’ lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers.

Caregivers needing care: the unmet needs of the family caregivers of end-of-life cancer patients

2017 ◽  
Vol 26 (3) ◽  
pp. 759-766 ◽  
Author(s):  
Maryam Hashemi ◽  
Alireza Irajpour ◽  
Fariba Taleghani
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Unmet Needs ◽  
The Family

Use of a computer model and care coaches to increase advance care planning conversations for patients with metastatic cancer.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 8-8
Author(s):  
Divya Gupta ◽  
Touran Fardeen ◽  
Winifred Teuteberg ◽  
Briththa Seevaratnam ◽  
Mary Khay Asuncion ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Advance Care Planning ◽  
Computer Model ◽  
Metastatic Cancer ◽  
Life Quality ◽  
Care Planning ◽  
Survival Prognosis ◽  
Advance Care ◽  
Lay Care

8 Background: Patients with metastatic cancer benefit from advance care planning (ACP) conversations. Despite initiatives which train providers to have ACP conversations using the serious illness care program (SICP) conversation guide, few patients have a documented prognosis discussion due to busy clinic schedules and difficulty in deciding the right times to have such conversations. We designed an intervention to improve ACP by incorporating a validated computer model to identify patients at high risk for mortality in combination with lay care coaches. We investigated whether this would improve end of life quality measures. Methods: Four Stanford clinics were included in this pilot; all received SICP training. Two clinics (thoracic and genitourinary) underwent the intervention (computer model + care coach), and two clinics (sarcoma and cutaneous) served as the control. For providers in the intervention, an email was sent every Sunday listing the metastatic cancer patients who would be seen in clinic the following week and a predicted prognosis generated by the model. A lay care coach contacted patients with a predicted survival ≤2 years to have an ACP conversation with them. After, the care coach notified the provider to suggest discussion regarding prognosis with the patient. Criteria for a patient visit to be included in the analysis were: age ≥18, established patient, has sufficient EMR data for computer model, and no prior prognosis documentation. The primary outcome was documentation of prognosis in the ACP form by the end of the week following the clinic visit. Results: 5330 visits in 1298 unique patients met the inclusion criteria. Median age was 67 (range 19-97); 790 male, 508 female. 1970 visits were with patients with ≤2 year predicted survival. Prognosis discussion was documented by providers in the ACP form for 8.1% of intervention visits compared to 0.07% of control visits (p=0.001 in mixed effects model). Of the 1298 unique patients, 84 were deceased by December 2020. 41.7% died in the hospital. 59.5% were enrolled in hospice prior to death, and 19.0% were hospitalized in the ICU ≤14 days prior to death. Of deceased patients with ACP form prognosis documentation, 5.0% had ≥2 hospitalizations in the 30 days before death compared to 23.4% of deceased patients with no prognosis documented (p=0.10). For ≥ 2 ER visits in the 30 days before death, the proportions were 5.0% and 20.3% (p=0.17). Conclusions: This pilot study supports that our intervention is associated with higher rates of prognosis discussions and documentation. There was a trend towards better quality of end of life care as noted by higher rates of hospice enrollment and less intensive care at end of life. These results merit further investigation as a means to improve goal-concordant care and ensure appropriate care for cancer patients at the end of life.

scholarly journals Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038528
Author(s):  
Angela JJM Keijzer-van Laarhoven ◽  
Dorothea P Touwen ◽  
Bram Tilburgs ◽  
Madelon van Tilborg-den Boeft ◽  
Claudia Pees ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Systematic Reviews ◽  
Moral Dilemmas ◽  
Barriers And Facilitators ◽  
Care Planning ◽  
People With Dementia ◽  
Meta Review ◽  
Advance Care

Importance and objectiveConducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.DesignFor this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians’ moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).Setting and participantsPhysicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians’ moral considerations.Main outcomesPhysicians’ moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.ResultsOf 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician’s interpretation or the context.ConclusionsPhysicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

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