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.

Personalized end-of-life care: Associations between patient preferences and treatment intensity near death

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 6516-6516 ◽  
Author(s):  
A. A. Wright ◽  
J. W. Mack ◽  
E. D. Trice ◽  
T. A. Balboni ◽  
S. D. Block ◽  
...  
Keyword(s):  
Medical Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
Treatment Center ◽  
Treatment Intensity ◽  
Cancer Type ◽  
Do Not Resuscitate ◽  
Icu Admission ◽  
Eol Care ◽  
Prospective Longitudinal

6516 Background: Medical treatment at the end-of-life (EOL) should be responsive to patient values, but research shows it may instead reflect the regional supply of health services and/or physician practice patterns. We sought to determine whether patients' preferences are associated with EOL medical care and place of death. 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 317 deceased patients interviewed at baseline and followed until death, a median of 4.4 months later. EOL care was obtained from chart review, and regressed on patients' baseline preferences for life-extending therapy. Analyses were adjusted for significant confounds; i.e., socio-demographics, cancer type, patient denial, EOL discussion, do-not resuscitate (DNR) order, and treatment center. A sub-analysis examined EOL care within three different medical centers to determine whether patients' preferences and treatment intensity varied by region/practice type. Results: 90 of 317 patients (28.4%) reported a desire to receive life-extending therapy at baseline. Patients' preferences did not differ by proximity to death or performance status, but patients who preferred life-extending therapy had higher rates of denial (75.0% vs. 55.6%, p = 0.002) and were less likely to report having an EOL conversation (24.4% vs. 48.9%, p = 0.0002) or a DNR order (24.4% vs. 48.9%, p < 0.0001). These patients were more likely to undergo ICU admission (AOR 4.6, 95% CI 1.9–11.1) and ventilation (AOR 3.0, 95% CI 1.2–7.3), and die in an ICU (AOR 6.7, 95% CI 2.4–18.7) instead of at home (AOR 0.6, 95% CI 0.3–0.9). A sub-analysis of patients treated at Yale, Parkland, and New Hampshire Oncology-Hematology confirmed that patients' preference for life-extending treatment was associated with higher rates of ICU admission in all three centers. Conclusions: Advanced cancer patients' treatment preferences may play a more important role in determining the intensity of medical care at the EOL than previously recognized. Future research should determine whether these preferences are informed and thus reflect patients' true values for EOL care. No significant financial relationships to disclose.

“Months, not years”: Impact of clinical discussions of advanced cancer life-expectancy on patient illness understanding.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 30-30
Author(s):  
Andrew S. Epstein ◽  
Holly Gwen Prigerson ◽  
Leonard Saltz ◽  
Eileen Mary O'Reilly ◽  
Manish A. Shah ◽  
...  
Keyword(s):  
Life Expectancy ◽  
End Of Life ◽  
Advanced Cancer ◽  
Best Practice ◽  
Chemotherapy Regimen ◽  
Advanced Cancer Patients ◽  
Coping With Cancer ◽  
Before And After ◽  
Observational Cohort ◽  
Upper Gastrointestinal

30 Background: Patients’ understanding of their illness often guides best practice, and this is no less true at the end of life. Data showing the influence of patients’ acknowledgment of prognostic discussions on the accuracy of patients’ illness understanding could inform the debate regarding how to engage in these difficult discussions. Methods: To evaluate the effects of recent and past oncologist-patient discussions about prognosis/life-expectancy (P/LE) on changes in advanced cancer patents’ illness understanding (acknowledgement of their illness as 1. terminal; 2. incurable; 3. advance staged; and 4. associated with an estimated life-expectancy in months, not years), 208 patients (with advanced lung or upper gastrointestinal cancers that progressed on 1 chemotherapy regimen, or advanced colorectal cancers that progressed on 2) from Coping with Cancer II, a prospective observational cohort study, were interviewed before and after a visit with their oncologists who discussed scan results regarding potential additional progression. Results: Median time between pre- and post-scan interviews was 38 days. Controlling for potential confounds (i.e., patients’ race) and adjusting for patients’ pre-scan illness understanding, patients who acknowledged ever having discussions of P/LE with their oncologists were more likely to recognize that their disease was incurable (Adjusted Odds Ratio [AOR] = 2.97, p = 0.009) than those who did not. Compared to patients who denied ever having a discussion of P/LE, those who reported having both recent and past discussions of P/LE were more likely to recognize that their disease was at an advanced stage (AOR = 4.88, p = 0.012), and those who reported having only recent discussions, or both recent and past discussions, of P/LE were more likely to estimate their life-expectancy in terms of months as opposed to years (AOR = 10.1, p = 0.050, and AOR = 17.5, p = 0.006, respectively). Conclusions: Advanced cancer patients who acknowledge having discussions of P/LE with their oncologists have a better understanding of the terminal nature of their illnesses as compared to those who do not, and thus may be better prepared to make informed end-of-life care decisions.

Predictors of aggressive end-of-life care among Hispanic and white advanced cancer patients

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9538-9538 ◽  
Author(s):  
E. D. Trice ◽  
M. E. Nilsson ◽  
E. Paulk ◽  
S. DeSanto-Madeya ◽  
A. A. Wright ◽  
...  
Keyword(s):  
End Of Life ◽  
Religious Coping ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advanced Cancer Patients ◽  
Hispanic Patients ◽  
Aggressive Care ◽  
Eol Care ◽  
To Receive ◽  
White Patients

9538 Background: Some ethnic/racial minority cancer patients (e.g. African Americans) have been shown to receive more life-prolonging care at the end-of-life (EOL) than white patients. Nevertheless, few studies have investigated whether Hispanic cancer patients receive more aggressive care than white patients and limited information exists on the predictors of aggressive care among Hispanic patients. The present study examined rates and predictors of aggressive EOL care among Hispanic and white cancer patients. Methods: Subjects participated in a US multi-site, prospective study between September 2002 - August 2008. Data were derived from interviews, conducted in English or Spanish, of 292 self-reported Hispanic (N=58) or white (N=234) stage IV cancer patients and their caregivers. Patients were followed until death, a median of 118.5 days later. Caregiver post-mortem interviews documented patient care in the last week of life. “Aggressive EOL care” was operationalized as cardiopulmonary resuscitation and/or ventilation and death in an intensive care unit. Aggressive EOL care was regressed on the following baseline, patient-reported, independent variables: a preference for life-prolonging care, EOL treatment discussion, do-not-resuscitate (DNR) order, terminal illness acknowledgement, and religious coping. Logistic regression models were stratified by ethnic status and controlled for significant confounds (e.g. socioeconomic status). Results: Hispanic and white advanced cancer patients were equally likely to receive aggressive EOL care (5.2% and 3.4%, respectively; p=0.878). Although religious coping and treatment preferences predicted aggressive EOL care for white patients (adjusted odds ratio 7.76 [p=0.025] and 13.20 [p=0.008]), they were not predictive among Hispanic patients. Hispanic patients were less likely than white patients to have DNR orders (22.4% vs 50.4%; p=0.007). For both white and Hispanic cancer patients, no patient who reported an EOL discussion or DNR order at baseline received aggressive EOL care. Conclusions: Given that EOL discussions and DNR orders may prevent aggressive EOL care among Hispanic cancer patients, further efforts to engage Hispanic patients and their caregivers in these activities may reduce aggressive EOL care. No significant financial relationships to disclose.

Coping with cancer: Associations between coping methods and use of intensive life-prolonging care near death

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9575-9575 ◽  
Author(s):  
A. C. Phelps ◽  
P. K. Maciejewski ◽  
M. Nilsson ◽  
T. A. Balboni ◽  
A. A. Wright ◽  
...  
Keyword(s):  
Religious Coping ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Coping Mechanisms ◽  
Advanced Cancer Patients ◽  
Brief Cope ◽  
Coping With Cancer ◽  
Behavioral Disengagement ◽  
Prospective Longitudinal ◽  
Positive Religious Coping

9575 Background: Cancer patients cope with advanced illness in a variety of ways, including relying on their religious beliefs. Religious coping has been associated with preference for aggressive care near death, yet little is known about how religious and other coping mechanisms effect the use of intensive life-prolonging care at the end-of-life (EOL). We sought to determine how patient coping mechanisms affect the use of intensive life-prolonging EOL care among advanced cancer patients. Methods: The Coping with Cancer Study is a US multi-site, prospective, longitudinal cohort of 345 advanced cancer patients enrolled January, 2003 -August, 2007. The Brief COPE assessed active coping (e.g., problem solving), emotional-support based coping (e.g., getting comfort from others), and behavioral disengagement (e.g., giving up the attempt to cope). The Brief RCOPE assessed positive religious coping (e.g., seeking a strength and guidance from God) and negative religious coping (e.g., believing illness is God's punishment). Patients were followed until death, a median of 122 days after baseline assessment. The main outcome was receipt of intensive life-prolonging care, defined as receipt of ventilation or resuscitation in the last week of life. Results: Greater use of positive religious coping prospectively predicted receipt of intensive life-prolonging care (AOR, 5.43; p<0.001), ventilation (AOR, 4.40; p<0.01), resuscitation (AOR, 5.19; p<0.05), and death in the intensive care unit (AOR, 2.76; p<0.05) in the last week of life, controlling for confounding factors and other examined coping styles. In analyses that adjusted for significant confounding influences, behavioral disengagement was associated with DNR order completion (AOR, 2.80; p<0.01), and prospectively predicted lower rates of intensive life-prolonging care (AOR, 0.20; p<0.05), and ventilation (AOR 0.13, p<0.05). Conclusions: The manner in which patients cope with advanced cancer predicts receipt of intensive life-prolonging care at the EOL. Specifically, positive religious coping predicts the receipt of aggressive medical care near death. No significant financial relationships to disclose.

scholarly journals Racial Differences in Predictors of Intensive End-of-Life Care in Patients With Advanced Cancer

2009 ◽  
Vol 27 (33) ◽  
pp. 5559-5564 ◽  
Author(s):  
Elizabeth Trice Loggers ◽  
Paul K. Maciejewski ◽  
Elizabeth Paulk ◽  
Susan DeSanto-Madeya ◽  
Matthew Nilsson ◽  
...  
Keyword(s):  
End Of Life ◽  
Racial Differences ◽  
Advanced Cancer ◽  
Do Not Resuscitate ◽  
Advanced Cancer Patients ◽  
Black Patients ◽  
Patient Reported ◽  
Eol Care ◽  
To Receive ◽  
White Patients

Purpose Black patients are more likely than white patients to receive life-prolonging care near death. This study examined predictors of intensive end-of-life (EOL) care for black and white advanced cancer patients. Patients and Methods Three hundred two self-reported black (n = 68) and white (n = 234) patients with stage IV cancer and caregivers participated in a US multisite, prospective, interview-based cohort study from September 2002 to August 2008. Participants were observed until death, a median of 116 days from baseline. Patient-reported baseline predictors included EOL care preference, physician trust, EOL discussion, completion of a Do Not Resuscitate (DNR) order, and religious coping. Caregiver postmortem interviews provided information regarding EOL care received. Intensive EOL care was defined as resuscitation and/or ventilation followed by death in an intensive care unit. Results Although black patients were three times more likely than white patients to receive intensive EOL care (adjusted odds ratio [aOR] = 3.04, P = .037), white patients with a preference for this care were approximately three times more likely to receive it (aOR = 13.20, P = .008) than black patients with the same preference (aOR = 4.46, P = .058). White patients who reported an EOL discussion or DNR order did not receive intensive EOL care; similar reports were not protective for black patients (aOR = 0.53, P = .460; and aOR = 0.65, P = .618, respectively). Conclusion White patients with advanced cancer are more likely than black patients with advanced cancer to receive the EOL care they initially prefer. EOL discussions and DNR orders are not associated with care for black patients, highlighting a need to improve communication between black patients and their clinicians.

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.

Medical care and emotional distress associated with advanced cancer patients' end-of-life discussions with their physicians

2008 ◽  
Vol 26 (15_suppl) ◽  
pp. 6505-6505 ◽  
Author(s):  
A. A. Wright ◽  
A. Ray ◽  
B. Zhang ◽  
J. W. Mack ◽  
S. L. Mitchell ◽  
...  
Keyword(s):  
Medical Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Advanced Cancer Patients

Clinical trial participation as part of end-of-life (EOL) cancer care: Associations with medical care near death and bereaved caregivers’ mental health.

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 9102-9102
Author(s):  
Andrea Catherine Phelps ◽  
Baohui Zhang ◽  
Holly Gwen Prigerson
Keyword(s):  
Mental Health ◽  
Clinical Trial ◽  
Propensity Score ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Chart Review ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
Advanced Cancer Patients ◽  
Eol Care

9102 Background: Clinical trial participation is necessary to improve existing therapies, encouraged by national guidelines, and common among advanced cancer patients. The relationships between trial participation and important EOL outcomes such as aggressive care are unknown. Methods: Coping with Cancer Study, an NCI-funded multicenter prospective cohort study of advanced cancer patients and their caregivers, enrolled September 2002 – February 2008. Patients were interviewed at baseline, and clinical trial participation was documented by chart review. Patients were followed to death, (median 4.4 months from baseline). Medical care and quality of life (QOL) in the last week of life was assessed by caregiver interview and chart review. Caregiver interview 6 months post-bereavement assessed QOL and mental health (Structured Clinical Interview for the DSM-IV). The primary outcome was aggressive EOL care (ventilation, resuscitation, or chemotherapy in the last week of life). Secondary outcomes were bereaved caregivers’ mental health and QOL. Propensity-score weighting balanced patient characteristics (e.g. clinical variables, EOL preferences) that differed by trial participation. Propensity-score weighted regression models estimated the effect of trial participation on outcomes. Results: Of 246 patients followed to death with non-missing propensity scores, 27 were clinical trial participants. In propensity-score weighted analyses, trial participation was significantly associated with aggressive EOL care [29.6% v 9.1%; adjusted OR (AOR), 12.14; 95% CI, 3.65-40.36], ICU admission, mechanical ventilation, chemotherapy, and a trend toward inferior QOL near death (p = 0.069). Of 180 matched caregivers, trial participation predicted less mental illness [AOR, 0.15; 95% CI 0.04-0.57], major depression [AOR, 0.25; 95% CI, 0.08-0.80], but was unassociated with QOL (p = 0.15) in adjusted analyses. Conclusions: Clinical trial participation is associated with increased risk of aggressive EOL care for advanced cancer patients, but better mental health for bereaved caregivers.

scholarly journals Preference for Aggressive End-of-Life Care among Advanced Cancer Patients in Wuhan, China: A Cross-Sectional Study

2020 ◽  
Vol 17 (18) ◽  
pp. 6592
Author(s):  
Jing Liao ◽  
Bei Wu ◽  
Jing Mao ◽  
Ping Ni
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Financial Burden ◽  
Mainland China ◽  
Tube Feeding ◽  
Cross Sectional Study ◽  
Advanced Cancer Patients ◽  
Cross Sectional ◽  
Eol Care

Life-sustaining treatments (LSTs) and end-of-life (EOL) care’s goal for prolonging one’s life are defined as aggressive EOL care among critically ill patients. They have limited effects and add unnecessary financial burden to advanced cancer patients. A questionnaire survey was conducted to collect information on demographics, disease conditions, preference for LSTs, and goal of EOL care among advanced cancer patients of comprehensive grade-A tertiary hospitals in Wuhan, mainland China. Most patients preferred to accept LSTs when they were in a critical condition, including cardiopulmonary resuscitation (89.9%), mechanical ventilation support (85.7%), nasogastric tube feeding (84.1%), blood transfusion (89.8%), general surgery (87.5%), and hemodialysis (85.8%). Most (88%) preferred prolonging life as the goal of EOL care. Logistic regression showed common influencing factors were participants who completed junior high/high school or below and were financially adequate had higher reference for aggressive EOL care. Patients whose physician had accurately disclosed prognosis; however, showed a decrease trend for aggressive EOL care. Most advanced cancer patients preferred to accept aggressive EOL care. Discussions about prognosis disclosure among physicians and patients should be improved. Education about LSTs’ limitations and comfort-oriented care’s benefits should be promoted among the advanced cancer patients in mainland China.

scholarly journals A light in the dark: end-of-life conversations in advanced cancer patients improve caregiver grief

2021 ◽  
Vol 7 (2) ◽  
Author(s):  
Nicole Meeks
Keyword(s):  
Mental Health ◽  
Medical Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Clinical Decision ◽  
Advanced Cancer Patients ◽  
Dark End ◽  
End Stage ◽  
Caregiver Grief

A clinical decision report using: Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, & Prigerson HG. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673. https://doi.org/10.1001/jama.300.14.1665 for a patient with end stage cancer and an anxious caregiver.

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