Patients’ perceptions of caregivers’ preference for comfort care at the EOL: Impact on DNR completion.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9521-9521
Author(s):  
Kalen Michele Fletcher ◽  
Holly Gwen Prigerson ◽  
Paul K Maciejewski
Keyword(s):  
Family Caregivers ◽  
Advanced Cancer ◽  
Life Extension ◽  
Advanced Cancer Patients ◽  
Comfort Care ◽  
Coping With Cancer ◽  
Order Completion ◽  
Advance Care ◽  
Eol Care ◽  
Actual Agreement

9521 Background: Research has shown that informal caregivers provide substantial psychosocial and material support to advanced cancer patients. Few studies have examined how family caregivers influence patients’ advance care planning. Here we test whether patients’ perceptions of their caregivers’ preference for comfort (vs. life-extending) end-of-life (EOL) care is associated with DNR order completion. We also evaluated whether caregivers’ actual agreement with patients on preference for comfort EOL care was associated with their rates of DNR order completion. Methods: Coping with Cancer II is an NCI –funded, multi-site, prospective cohort study of patients with advanced cancer and their informal family caregivers. Patients are interviewed after receiving restaging scan results and asked if they would prefer a plan of EOL care focused on life-extension or one focused on relieving pain. Patients are also asked what type of EOL care they think their family caregivers would prefer for them and whether or not a DNR order has been completed for them. Caregivers are interviewed separately after patients receive restaging scan results and asked what type of EOL care they would want for the patient. Results: Based on patient data alone (N=72), patients who preferred comfort care at the EOL and who believe that their family caregiver agrees with them on this were significantly more likely than others to report DNR order completion (OR=3.67, p=0.013). Based on data from both patients and caregivers, patients’ perception of agreement with their caregivers on desire for comfort EOL care was more strongly associated with patients’ reports of DNR completion (rs=0.51, p=0.004) than was actual agreement with their caregivers on desire for comfort EOL care (rs=0.36, p=0.045). Conclusions: Patients who prefer comfort care to life-extending care at the EOL, and who think that their caregivers also want them to pursue comfort care, are more likely to have a DNR order completed. Interestingly, patients’ perception of this agreement had a stronger influence on DNR completion than the caregivers’ actual agreement with patients’ preference for comfort EOL care. DNR completion is influenced by patients’ perceptions of family support.

Latino ethnicity, immigrant status, and preference for life-extending end-of-life cancer care.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10028-10028
Author(s):  
Ana Isabel Tergas ◽  
Holly Gwen Prigerson ◽  
Megan Johnson Shen ◽  
Paul K Maciejewski
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Multiple Logistic Regression Analysis ◽  
Latino Immigrants ◽  
Immigrant Status ◽  
Advanced Cancer Patients ◽  
Comfort Care ◽  
Coping With Cancer ◽  
Advance Care

10028 Background: Latino advanced cancer patients are less likely to engage in advance care planning, use hospice services, and receive end-of-life (EOL) care in line with their preferences compared to non-Latino advanced cancer patients. Little is known about how immigration status influences preference for life-extending care (LEC) at the EOL. Methods: Data were derived from two sequential multi-institutional, longitudinal cohort studies of patients with advanced cancer recruited from 2002 – 2008 (Coping with Cancer I [CwC-1]) and 2010 – 2015 (Coping with Cancer II [CwC-2]). Multiple logistic regression analysis was used to estimate effects of immigrant status and CwC cohort among Latinos, and effects of ethnicity and CwC cohort among US-born Latinos and non-Latino whites, on preference for LEC at the EOL. Results: Of the 760 studied cancer patients, 661 were US-born non-Latino (US non-L), 34 were US-born Latino (USL) and 65 were Latino immigrants (LI). LI were less educated (mean years of education: 7.8 years) than USL (11.1 years), who were in turn less educated than US non-L (13.7 years). Far fewer LI had insurance compared to USL (18.5% vs. 64.7%, respectively; p < 0.001), and fewer USL had insurance compared to US non-L (64.7% vs. 81.4%, respectively; p = 0.017). Within CwC-2, LI had higher odds of preferring LEC over comfort care compared to USL (adjusted odds ratio [AOR] = 9.4; 95% CI: 1.2, 72.4), and USL had lower odds of preferring LEC compared to US non-L (AOR = 0.3; 95% CI: 0.1, 1.0). LI from CwC-2 had higher odds of preferring LEC compared to LI from CwC-1 (AOR = 11.4; 95% CI: 2.7, 48.4), but there was no difference between USL from CwC-2 and USL from CwC-1. US non-L from CwC-2 had higher odds of preferring LEC compared to US non-L from CwC-1 (AOR = 3.9; 95% CI: 2.6, 5.9). Within CwC-1, there was no difference in LEC preference between LI and USL, nor between USL and US non-L. Conclusions: Immigrant status has a strong effect on preference for life-extending care among the more recent cohort of Latino cancer patients. Preference for life-extending care appears to have increased significantly over time for Latino immigrants, but remained unchanged for US-born Latinos. Latino immigrants may increasingly want life-extending care near death.

scholarly journals An examination of Latino-advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study

2019 ◽  
Vol 18 (3) ◽  
pp. 277-284
Author(s):  
Megan Johnson Shen ◽  
Cyndi Gonzalez ◽  
Benjamin Leach ◽  
Paul K. Maciejewski ◽  
Elissa Kozlov ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Religious Beliefs ◽  
Family Members ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Eol Care ◽  
Language For Learning

AbstractObjectivesLatino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.MethodsPatients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.ResultsFindings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.Significance of resultsKey cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

Tailoring end-of-life discussions to advanced cancer patients’ state of grief

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9500-9500
Author(s):  
H. G. Prigerson ◽  
A. A. Wright ◽  
S. D. Block ◽  
P. K. Maciejewski
Keyword(s):  
Medical Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
Cancer Diagnosis ◽  
Chart Review ◽  
Advanced Cancer Patients ◽  
Coping With Cancer ◽  
Eol Care ◽  
Prospective Longitudinal ◽  
Prospective Longitudinal Cohort

9500 Background: Prior research has shown end-of-life (EOL) discussions are not associated with significant psychological distress, but are associated with earlier referrals to hospice and lower rates of intensive care. Nevertheless, associations between EOL discussions and care received may vary depending on patients’ state of grief over their cancer diagnosis. The aim of this study was to determine how Kubler-Ross’ proposed 5 states of grief –numbness, anger, bargaining, depression, and acceptance –modify the effects of EOL discussions on EOL care received. We hypothesized that the early grief state of numbness would interfere with patients’ processing of an EOL discussion, thereby, reducing its association with care received. Methods: Coping with Cancer is an NCI/NIMH-funded, multi-site prospective, longitudinal cohort study of patients with advanced cancer, conducted from September 2002-February 2008. Analyses were based upon 316 deceased patients who were interviewed at baseline and followed until death 4.4 months later. Patients were assessed at baseline on 5 grief states in response to their cancer diagnosis (i.e., numbness, anger, bargaining, depression, and acceptance) and whether an EOL discussion with their physician had occurred. Information on medical care received in the last week of life was obtained from chart review, and regressed on the interaction between each of the 5 grief states and the patient's report of an EOL discussion. Results: Of the 5 grief states, only numbness significantly moderated the effect of EOL discussions on medical care received. For patients with higher than average numbness (i.e., ≥ 1 on the 0–4 numbness score continuum), the effect of EOL discussions on ventilation or resuscitation in the last week of life was significantly reduced by a factor of 10 [OR=9.96, 95% CI (1.21–82.2)]; the effect of EOL discussions on death in the ICU was significantly reduced by a factor of three [OR=2.98, 95% CI (1.01–8.78)]. Conclusions: Associations between EOL discussions and care received are much reduced among patients who are high on numbness (i.e., those who have not resolved the 1st grief state). Physicians should consider their patients’ grief state (i.e., numbness) when deciding whether to engage in EOL discussions. No significant financial relationships to disclose.

scholarly journals Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

2020 ◽  
Author(s):  
Naomi Dhollander ◽  
Tinne Smets ◽  
Aline De Vleminck ◽  
Lore Lapeire ◽  
Koen Pardon ◽  
...  
Keyword(s):  
Home Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Control Group ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Palliative Home Care ◽  
Early Integration

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

Quality of life domains important and relevant to family caregivers of advanced cancer patients in an Asian population: a qualitative study

2014 ◽  
Vol 24 (4) ◽  
pp. 817-828 ◽  
Author(s):  
Geok Ling Lee ◽  
Mandy Yen Ling Ow ◽  
Ramaswamy Akhileswaran ◽  
Grace Su Yin Pang ◽  
Gilbert Kam Tong Fan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Asian Population ◽  
Life Domains ◽  
Advanced Cancer Patients

scholarly journals “My Family Wants Something Different”: Discordance in Perceived Personal and Family Treatment Preference and Its Association With Do-Not-Resuscitate Order Placement

2019 ◽  
Vol 15 (11) ◽  
pp. e942-e947
Author(s):  
Login S. George ◽  
William Breitbart ◽  
Holly G. Prigerson
Keyword(s):  
Advance Care Planning ◽  
Life Extension ◽  
Treatment Preference ◽  
Family Treatment ◽  
Treatment Preferences ◽  
Care Planning ◽  
Do Not Resuscitate ◽  
Structured Interviews ◽  
Comfort Care ◽  
Advance Care

PURPOSE: Patients make treatment decisions based not only on what they want, but what they think their families want. Discordance in such perceived preferences may therefore pose challenges for advance care planning. This study examines discordance in preference for life-extending care versus comfort-focused care and its association with do-not-resuscitate (DNR) order placement. METHODS: One hundred eighty-nine patients with advanced cancers refractory to at least one chemotherapy regimen were enrolled in a multisite observational study. In structured interviews, patients reported their preference for treatment maximizing either life extension or comfort; patients also indicated their perception of their families’ preference. DNR placement was reported by patients and verified using medical records. RESULTS: Approximately 23% of patients (n = 43) perceived discordance between their preference and their families’ preference. Patients who perceived discordance were less likely to have completed a DNR compared with those who perceived concordance, even after controlling for relevant confounds (odds ratio = .35; P = .02). Subgroups of discordance and concordance showed varying DNR placement rates (χ2, 19.95; P < .001). DNR placement rate was lowest among discordant subgroups, where there was either a personal (26.7%; four of 15) or family preference for comfort care (28.6%; eight of 28), followed by patients who perceived concordance for wanting life-extending care (34.5%; 29 of 84) and by patients who perceived concordance in wanting comfort-focused care (66.1%; 41 of 62). CONCLUSION: Many patients may perceive discordance between personal and family treatment preferences, posing impediments to advance care planning. Such patients may benefit from additional decision support.

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