End-of-Life Discussions, Goal Attainment, and Distress at the End of Life: Predictors and Outcomes of Receipt of Care Consistent With Preferences

Purpose Physicians have an ethical obligation to honor patients' values for care, including at the end of life (EOL). We sought to evaluate factors that help patients to receive care consistent with their preferences. Methods This was a longitudinal multi-institutional cohort study. We measured baseline preferences for life-extending versus symptom-directed care and actual EOL care received in 325 patients with advanced cancer. We also measured associated sociodemographic, health, and communication characteristics, including EOL discussions between patients and physicians. Results Preferences were assessed a median of 125 days before death. Overall, 68% of patients (220 of 325 patients) received EOL care consistent with baseline preferences. The proportion was slightly higher among patients who recognized they were terminally ill (74%, 90 of 121 patients; P = .05). Patients who recognized their terminal illness were more likely to prefer symptom-directed care (83%, 100 of 121 patients; v 66%, 127 of 191 patients; P = .003). However, some patients who were aware they were terminally ill wished to receive life-extending care (17%, 21 of 121 patients). Patients who reported having discussed their wishes for EOL care with a physician (39%, 125 of 322 patients) were more likely to receive care that was consistent with their preferences, both in the full sample (odds ratio [OR] = 2.26; P < .0001) and among patients who were aware they were terminally ill (OR = 3.94; P = .0005). Among patients who received no life-extending measures, physical distress was lower (mean score, 3.1 v 4.1; P = .03) among patients for whom such care was consistent with preferences. Conclusion Patients with cancer are more likely to receive EOL care that is consistent with their preferences when they have had the opportunity to discuss their wishes for EOL care with a physician.

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Happiness at the end of life: A qualitative study

Palliative & Supportive Care ◽

10.1017/s1478951521000262 ◽

2021 ◽

pp. 1-7

Author(s):

Tan Seng Beng ◽

Wong Ka Ghee ◽

Ng Yun Hui ◽

Ooi Chieh Yin ◽

Khoo Wei Shen Kelvin ◽

...

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

End Of Life ◽

Terminal Illness ◽

Terminally Ill ◽

Social Connections ◽

Targeted Interventions ◽

Pain And Suffering ◽

The University ◽

Eudaimonic Happiness

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

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Association between perceptions of prognosis and end-of-life outcomes for patients with advanced lung and gastrointestinal cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.6503 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. 6503-6503

Author(s):

Carlisle E. W. Topping ◽

Madeleine Elyze ◽

Rachel Plotke ◽

Lauren Heuer ◽

Charu Vyas ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Gastrointestinal Cancer ◽

Controlled Trial ◽

Terminally Ill ◽

Cancer Type ◽

Linear Regression Models ◽

Care Intervention ◽

Eol Care ◽

At Home

6503 Background: Many patients with advanced cancer maintain misperceptions of their prognosis and are thus unprepared to make difficult decisions regarding their end-of-life (EOL) care. However, studies examining the associations between patients’ perceptions of their prognosis and their EOL outcomes are limited. Methods: We conducted a secondary analysis using longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable lung and non-colorectal gastrointestinal cancer. We administered the Prognosis and Treatment Perceptions Questionnaire to assess patients’ perceptions of their prognosis at baseline, week-12, and week-24, using the final assessment closest to death. We used multivariate logistic and linear regression models, adjusting for age, gender, marital status, cancer type, and randomization to the palliative care intervention, to examine the associations among patients’ perceptions of their prognosis with the following EOL care outcomes abstracted from the electronic health record: 1) hospice utilization and length-of-stay (LOS); 2) hospitalizations in the last 30 days of life; 3) receipt of chemotherapy in the last 30 days of life; and 4) location of death. Results: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period and were included in this analysis. Overall, 59.4% (164/276) of patients reported that they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. In multivariate analyses, patients who reported that their cancer was likely curable were less likely to utilize hospice (OR = 0.25, 95%CI 0.10-0.61, P = 0.002) or die at home (OR = 0.56, 95%CI 0.32-0.98, P = 0.043), and more likely to be hospitalized in the last 30 days of life (OR = 2.28, 95%CI 1.20-4.32, P = 0.011). In contrast, patients’ report that they were terminally ill was only associated with lower likelihood of hospitalizations in the last 30 days of life (OR = 0.52, 95%CI 0.29-0.92, P = 0.025). Patients’ perceptions of their prognosis were not associated with hospice LOS or chemotherapy administration in the last 30 days of life. Conclusions: Patients’ perceptions of their prognosis are associated with important EOL outcomes including hospice utilization, hospitalizations at the EOL, and death at home. Interventions are needed to enhance patients’ perceptions of their prognosis in order to optimize their EOL care.

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Can there be a Disability Studies Theory of "End-of-Life Autonomy?"

Disability Studies Quarterly ◽

10.18061/dsq.v31i4.1704 ◽

2011 ◽

Vol 31 (4) ◽

Cited By ~ 2

Author(s):

Harold Braswell

Keyword(s):

End Of Life ◽

Disability Studies ◽

Terminal Illness ◽

Medical Condition ◽

Terminally Ill ◽

Persons With Disabilities ◽

Self Development ◽

Relational Process

KeywordsADA, autonomy, bioethics, end-of-life, euthanasia, terminal illnessAbstractIn this article, I examine the possibility of a disability studies theory of "end-of-life autonomy." I define "end-of-life autonomy" as an individual's legally protected and medically enacted decision to die in response to a serious incurable medical condition. Disability studies scholars criticize such autonomy when it is exercised by persons with disabilities, but are divided on its application to the terminally ill. But the problem with end-of-life autonomy is not determining the correct population to which it applies; it is the ableism underlying the concept of "autonomy" itself. I redefine "autonomy" as a relational process of self-development that is oriented toward a greater recognition of dependence. This rethinking can make the ADA more responsive to terminally ill individuals, and helps lay the foundation for a disability studies theory of end-of-life autonomy.

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Family Perspectives on Hospice Care Experiences of Patients with Cancer

Journal of Clinical Oncology ◽

10.1200/jco.2016.68.9257 ◽

2017 ◽

Vol 35 (4) ◽

pp. 432-439 ◽

Cited By ~ 30

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.

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Spirituality and religion in terminally ill patients with cancer

Journal of Clinical Oncology ◽

10.1200/jco.2007.25.18_suppl.19587 ◽

2007 ◽

Vol 25 (18_suppl) ◽

pp. 19587-19587

Author(s):

P. Heras ◽

K. Kritikos ◽

A. Georgopoulou ◽

A. Hatzopoulos ◽

N. Kritikos

Keyword(s):

End Of Life ◽

Cancer Patients ◽

Terminally Ill ◽

Well Being ◽

Negative Association ◽

Terminally Ill Cancer Patients ◽

Patients With Cancer ◽

Spirituality And Religion ◽

Spiritual Well Being ◽

Strong Negative Association

19587 Background: The importance of spirituality and religion in coping with a terminal illness is becoming increasingly recognised. We aimed to assess the relation between spiritual well-being, religiosity, depression, and end-of-life despair in terminally-ill cancer patients. Methods: One hundred forty three terminally ill cancer patients with a life expectancy of less than 6 months were interviewed with a series of standardised instruments, including the FACIT Spiritual Well-Being Scale, a religiosity index similar to those used in previous research, the Hamilton depression rating scale, the Memorial Symptom Assessment Scale and the Duke-UNC Functional Social Support Questionnaire. Results: A strong negative association was observed between the FACIT Spiritual Well-Being scale and the HDRS, but no such relationship was found for religiosity. Similar patterns were observed for the FACIT subscales, finding a strong negative association between the meaning and peace subscale (which corresponds to the more existential aspects of spirituality) and HDRS scores, whereas a positive, albeit nonsignificant, association was observed for the faith subscale (which corresponds more closely to religiosity). Conclusions: These results suggest that the beneficial aspects of religion may be primarily those that relate to spiritual well-being rather than to religious practices per se. Spiritual well-being offers some protection against end-of-life despair in those for whom death is imminent. The area of spiritual work is fertile ground for further investigation, especially interventions aimed at improving spiritual health and general quality of life among terminally ill patients with cancer. No significant financial relationships to disclose.

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The provision of end-of-life care by medical-surgical nurses working in acute care: A literature review

Palliative & Supportive Care ◽

10.1017/s1478951513000965 ◽

2013 ◽

Vol 12 (5) ◽

pp. 393-408 ◽

Cited By ~ 24

Author(s):

Judith Gagnon ◽

Wendy Duggleby

Keyword(s):

Literature Review ◽

End Of Life ◽

Acute Care ◽

Organizational Support ◽

Terminally Ill ◽

Acute Care Hospitals ◽

Critical Examination ◽

Terminally Ill Patients ◽

Emotional Work ◽

Eol Care

AbstractObjective:Caring for terminally ill patients is complex, stressful, and at times distressing for nurses. Acute care hospitals continue to be the predominant place of death for terminally ill patients in most Western countries. The objective of the present literature review was to explore and gain an in-depth understanding of the experience of providing end-of-life (EOL) care by medical-surgical RNs working in acute care hospitals, to identify knowledge gaps, and to recommend future research.Method:A comprehensive literature review was conducted using the following electronic databases: CINAHL, MEDLINE, and PsyInfo (from 1992 to October 2012).Results:The findings from the 16 reviewed studies suggest that nurses felt a strong commitment to help terminally ill patients experience a good death. Nurses reported feeling deeply rewarded and privileged to share the EOL experience with patients/families. Organizational and individual factors influenced nurses' experience. Important challenges were associated with managing the divergent needs of a mixed patient load (i.e., curative and palliative care patients) in a biomedical culture of care that is heavily oriented toward cure and recovery. In this culture, nurses' emotional work and ideals of good EOL care are often not recognized and supported.Significance of results:Managerial and organizational support that recognize the centrality of emotional work nurses provide to dying patients is needed. More research exploring ways to improve communication among nurses and medical colleagues is essential. Finally, a critical examination of the ideological assumptions guiding nurses' practice of EOL care within the context of acute care is recommended to help reveal their powerful influence in shaping nurses' overall understanding and experience of EOL care.

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Use of Palliative Chemo- and Radiotherapy at the End of Life in Patients With Cancer: A Retrospective Cohort Study

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909116653733 ◽

2016 ◽

Vol 34 (9) ◽

pp. 801-805 ◽

Cited By ~ 5

Author(s):

Zhe Zhang ◽

Xiao-Li Gu ◽

Meng-Lei Chen ◽

Ming-Hui Liu ◽

Wei-Wei Zhao ◽

...

Keyword(s):

Cardiopulmonary Resuscitation ◽

End Of Life ◽

Medical Records ◽

Palliative Chemotherapy ◽

Performance Status ◽

Terminally Ill ◽

Cardiovascular Complications ◽

Cancer Center ◽

Patients With Cancer ◽

Terminally Ill Patients

Background: Administration of chemotherapy and radiotherapy near the end of life is a frequently discussed issue nowadays. We have evaluated the factors associated with the use of chemotherapy and radiotherapy at the end of life among terminally ill patients in China. Methods: This study included the data from patients who had died from advanced cancer who underwent palliative chemotherapy and radiotherapy between January 2007 and December 2013 at the Department of Palliative Care of Fudan University, Shanghai Cancer Center. Data were collected from hospital medical records. Univariate and multivariate analyses were conducted to identify the factors independently associated with the use of chemo- and radiotherapy. Results: Among the 410 patients included (median age, 68 years; range, 18-93; 53% males), 47 (11.5%) underwent palliative chemotherapy and 28 (6.8%) underwent radiotherapy in the last 30 days. Age <65 years (odds ratio [OR]: 1.33, 95% confidence interval [CI]: 1.06-2.88), performance status <3 (OR: 3.95; 95% CI: 1.56-5.07), and cardiopulmonary resuscitation (OR: 4.09, 95% CI: 2.66-5.34) were independently associated with the use of chemotherapy. Performance status <3 (OR: 4.06, 95% CI: 2.17-5.83) and cardiopulmonary resuscitation (OR: 5.28, 95% CI: 3.77-7.21) were independently associated with the use of radiotherapy. Conclusion: The findings indicate that younger patients with a lower performance status who do not have complications are more likely to opt for chemo- or radiotherapy. Further, the use of palliative chemo- and radiotherapy should be considered carefully in terminally ill patients with cancer, as they seem to indicate a higher risk of cardiovascular complications requiring resuscitation.

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Trajectories of Suffering in the Last Year of Life Among Patients With a Solid Metastatic Cancer

Journal of the National Comprehensive Cancer Network ◽

10.6004/jnccn.2021.7014 ◽

2021 ◽

pp. 1-8

Author(s):

Chetna Malhotra ◽

Rahul Malhotra ◽

Filipinas Bundoc ◽

Irene Teo ◽

Semra Ozdemir ◽

...

Keyword(s):

End Of Life ◽

Odds Ratio ◽

Healthcare Costs ◽

Hospital Admissions ◽

Metastatic Cancer ◽

Comprehensive Understanding ◽

Patients With Cancer ◽

Multivariable Models ◽

Hospital Days ◽

Death Data

Background: Reducing suffering at the end of life is important. Doing so requires a comprehensive understanding of the course of suffering for patients with cancer during their last year of life. This study describes trajectories of psychological, spiritual, physical, and functional suffering in the last year of life among patients with a solid metastatic cancer. Patients and Methods: We conducted a prospective cohort study of 600 patients with a solid metastatic cancer between July 2016 and December 2019 in Singapore. We assessed patients’ psychological, spiritual, physical, and functional suffering every 3 months until death. Data from the last year of life of 345 decedents were analyzed. We used group-based multitrajectory modeling to delineate trajectories of suffering during the last year of a patient’s life. Results: We identified 5 trajectories representing suffering: (1) persistently low (47% of the sample); (2) slowly increasing (14%); (3) predominantly spiritual (21%); (4) rapidly increasing (12%); and (5) persistently high (6%). Compared with patients with primary or less education, those with secondary (high school) (odds ratio [OR], 3.49; 95% CI, 1.05–11.59) education were more likely to have rapidly increasing versus persistently low suffering. In multivariable models adjusting for potential confounders, compared with patients with persistently low suffering, those with rapidly increasing suffering had more hospital admissions (β=0.24; 95% CI, 0.00–0.47) and hospital days (β=0.40; 95% CI, 0.04–0.75) during the last year of life. Those with persistently high suffering had more hospital days (β=0.70; 95% CI, 0.23–1.17). Conclusions: The course of suffering during the last year of life among patients with cancer is variable and related to patients’ hospitalizations. Understanding this variation can facilitate clinical decisions to minimize suffering and reduce healthcare costs at the end of life.

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End of Life Communication

Oxford Research Encyclopedia of Communication ◽

10.1093/acrefore/9780190228613.013.71 ◽

2016 ◽

Author(s):

Maureen P. Keeley

Keyword(s):

End Of Life ◽

Terminal Illness ◽

Death And Dying ◽

Family Members ◽

Terminally Ill ◽

Comfort Care ◽

Hospice Volunteers ◽

End Of Life Decision ◽

And Control ◽

End Of Life Communication

End of life communication includes both verbal and nonverbal messages that transpire following a diagnosis of a terminal illness and death. The circumstances that occur at the end of life create opportunities for unique and important communication. Specifically, communication at the end of life is impacted by numerous and complicated factors: First, cultural views on death and dying often determine what is talked about, when it can be talked about, and who is included in the conversations. Second, the fears, desires, and needs of the terminally ill must be taken into account at the end of life as it is their personal end of life journey. Third, the nature of the relationships between the terminally ill and their family and friends have tremendous influence on the nature and topics of conversations that will be shared. Fourth, interactions with healthcare professionals (preferably with palliative care specialists) tend to be more task focused, emphasizing end of life decision making and comfort care for the terminally ill. Fifth, as people are tending to live longer with terminal illness and often doing so far from their family, professional caregivers and hospice volunteers are also engaging in meaningful and significant communication with the terminally ill. Communication at the end of life often determines whether or not the dying are allowed to die with dignity, with some control over their final wishes, and whether they are ultimately able to obtain some peaceful closure. Within close relationships communication at the end of life has the potential for authentic conversations that bring people closer, heal old wounds, and allow the terminally ill and close others to create some final memories and to say goodbye to one another. Communication at the end of life with health professionals has the potential for both the terminally ill and their family members to have greater satisfaction with end of life decisions and control of pain for the terminally ill, as well as better outcomes regarding grief and bereavement following the death for family members. For hospice volunteers and professional caregivers, communication at the end of life teaches the necessity and complexities of interactions at the end of life for the larger society.

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Beyond striae cutis: A case report on how physical skin complaints unveiled end-of-life total experience

Palliative & Supportive Care ◽

10.1017/s1478951520000693 ◽

2020 ◽

pp. 1-3

Author(s):

Miguel Julião ◽

Paula Calçada ◽

Vasco Coelho Macias ◽

Pedro Mendes-Bastos

Keyword(s):

Case Report ◽

End Of Life ◽

Multidisciplinary Team ◽

Life Experience ◽

Terminally Ill ◽

Multidisciplinary Teams ◽

Terminal Cancer ◽

Physical Pain ◽

Holistic Approaches ◽

Physical Distress

Abstract Background End-of-life is a unique and multidimensional experience, and physical complaints can reveal other areas of distress. Method A case report of a woman with terminal cancer with painful and deforming skin striae cared by a multidisciplinary team. Results After initially treating her physical pain, other end-of-life psychosocial, spiritual, and existential aspects could be addressed. Significance of results Physical distress can unveil other essential areas of end-of-life experience when multidisciplinary teams caring for the terminally ill patients use holistic approaches.

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