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1.
Hastings Cent Rep ; 54(2): 12-21, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38639170

ABSTRACT

Although the field of surgical ethics focuses primarily on informed consent, surgical decision-making, and research ethics, some surgeons have started to consider ethical questions regarding justice and solidarity with poor and minoritized populations. To date, those calling for social justice in surgical care have emphasized increased diversity within the ranks of the surgical profession. This article, in contrast, foregrounds the agency of those most affected by injustice by bringing to bear an ethic of accompaniment. The ethic of accompaniment is born from a theological tradition that has motivated work to improve health outcomes in those at the margins through its emphasis on listening, solidarity against systemic drivers of disease, and proximity to individuals and communities. Through a review of surgical ethics and exploration of a central patient case, we argue for applying an ethic of accompaniment to the care of surgical patients and their communities.


Subject(s)
Informed Consent , Social Justice , Humans
2.
Support Care Cancer ; 31(7): 443, 2023 Jul 05.
Article in English | MEDLINE | ID: mdl-37405579

ABSTRACT

PURPOSE: Positive coping mediates improved outcomes from integrated palliative care in acute myeloid leukemia (AML). We qualitatively explored patients' coping mechanisms to better understand this relationship. METHODS: We enrolled patients with high-risk AML admitted to Duke Hospital's inpatient hematologic malignancy service for intensive chemotherapy. This study is a secondary analysis of previously collected longitudinal qualitative data, with interviews conducted between February 2014 and August 2015. Interviews were coded in NVivo to identify examples of approach-oriented and avoidant coping. RESULTS: Patients demonstrated approach-oriented coping in many forms including acceptance, positive reframing, active coping, religious coping, and social coping. Acceptance included accepting their prognosis, the uncertainty of AML, and lifestyle changes due to the disease. Patients exhibited positive reframing by speculating about how their situation could be worse, deriving meaning from their experience, and expressing newfound appreciation for activities previously taken for granted. Social coping involved patients receiving support from their community or care team; however, some expressed guilt for being a "burden" on family. Avoidant coping included denial, behavioral disengagement, and self-blame. Some denied their prognosis, but denial was more commonly demonstrated via patients cognitively distancing themselves from their disease. Much of the behavioral disengagement described by patients was attributed to their symptoms (i.e., lethargy) which prevented patients from maintaining relationships or participating in activities previously enjoyed. CONCLUSION: These results demonstrate the diverse and nuanced applications of coping mechanisms amid a recent AML diagnosis. Future research should examine coping in the context of novel low-intensity AML therapies.


Subject(s)
Adaptation, Psychological , Leukemia, Myeloid, Acute , Humans , Leukemia, Myeloid, Acute/therapy , Uncertainty , Palliative Care , Patients
3.
Otolaryngol Clin North Am ; 56(2): 403-412, 2023 Apr.
Article in English | MEDLINE | ID: mdl-37030951

ABSTRACT

Patients with laryngeal cancer undergo life-changing interventions that impact their individual and social well-being. There remains to be an in-depth characterization of the multidimensional symptom burden faced by patients with laryngeal cancer at the end of life. Care at end of life must attend to symptoms that manifest earlier in the course of illness. This article characterizes the suffering experienced by patients with laryngeal cancer, including societal shame, poor mental health, and inequitable outcomes. For patients with advanced laryngeal cancer, surgical palliative care provides a necessary and helpful paradigm for caregiver support, goals-of-care conversations, and treatment counseling.


Subject(s)
Laryngeal Neoplasms , Neoplasms , Humans , Laryngeal Neoplasms/surgery , Palliative Care/methods , Neoplasms/psychology , Neoplasms/therapy , Death , Mental Health , Counseling , Quality of Life/psychology
4.
Lung Cancer ; 175: 17-26, 2023 01.
Article in English | MEDLINE | ID: mdl-36442383

ABSTRACT

OBJECTIVES: There are limited real-world data about patient-reported outcomes with immunotherapies (IO) in metastatic non-small cell lung cancer (mNSCLC). We describe patient-reported distress and clinical outcomes with IO-based treatments or cytotoxic chemotherapies (Chemo). METHODS: We conducted a single-institution retrospective chart review of adults with mNSCLC treated at Duke from 03/2015 to 06/2020. At each visit, patients self-reported their distress level and sources of distress using the NCCN Distress Thermometer (DT) and its 39-item Problem List. We abstracted demographic, clinical, distress, and investigator assessed-clinical response data, then analyzed these using descriptive statistics and generalized estimating equations. RESULTS: Data from 152 patients were analyzed in four groups: Chemo alone, IO + Chemo, single agent IO, dual agent IO. Distress was worse before treatment start in all groups, and the odds of actionable distress (DT score > 4) decreased by 10 % per month. The most frequent sources of distress were physical symptoms (e.g., fatigue, pain), which remained high longitudinally. Patients receiving IO had higher clinical response rates and a lower rate of unplanned healthcare encounters compared to patients treated with Chemo alone. Only one-third of all patients were seen by palliative care. CONCLUSIONS: This single-center, real-world evidence study demonstrates that patients with mNSCLC experience significant distress prior to starting first-line treatment. IO treatment was associated with higher clinical benefit rates and lower healthcare utilization compared to chemotherapy. Symptom distress persists over time, highlighting potential unmet palliative and supportive care needs in mNSCLC care in the IO treatment era.


Subject(s)
Carcinoma, Non-Small-Cell Lung , Lung Neoplasms , Adult , Humans , Carcinoma, Non-Small-Cell Lung/drug therapy , Carcinoma, Non-Small-Cell Lung/pathology , Lung Neoplasms/drug therapy , Lung Neoplasms/pathology , Retrospective Studies , Patient Acceptance of Health Care , Patient Reported Outcome Measures
5.
Support Care Cancer ; 31(1): 87, 2022 Dec 27.
Article in English | MEDLINE | ID: mdl-36573958

ABSTRACT

PURPOSE: Meaning-making is fundamental to the cancer experience and communication within cancer care is saturated with metaphors. The objective of this study was to better understand the impact and function of war metaphors among patients with cancer. METHODS: Patients at the Duke Cancer Center were purposively sampled for inclusion based on type and stage of their cancer. Each patient underwent a semi-structured interview to explore their use of metaphors in their lived experience with cancer. Qualitative interviews broadly explored two key areas of interest: (1) frequency and use of metaphors to describe cancer diagnosis, treatment, or survivorship; (2) function and impact of the war metaphor on the patient experience of cancer. RESULTS: Fifteen participants with either breast, lung, or colorectal cancer were interviewed. Most patients used metaphor themes of journey, war, and mystery to describe their cancer. All patients with non-metastatic disease used war metaphors and described how these metaphors facilitated meaning-making by promoting positivity and situating cancer within a larger life story. The few patients who did not use war metaphors had metastatic disease, and they explained that war metaphors were unhelpful due to feeling a lack of control over their metastatic disease and outcomes. CONCLUSION: The war metaphor should remain an integral part of cancer care. Disregarding war metaphors robs patients of an important framework for meaning-making-one that may promote strength, continuity, and resilience in navigating cancer.


Subject(s)
Metaphor , Neoplasms , Humans , Neoplasms/therapy , Communication , Patients
6.
J Natl Compr Canc Netw ; 20(10): 1116-1123, 2022 10.
Article in English | MEDLINE | ID: mdl-36240844

ABSTRACT

BACKGROUND: Patients with acute myeloid leukemia (AML) face an abrupt life-threatening illness and experience immense physical and psychological symptoms. However, no data describe how patients with AML cope longitudinally with their illness or the relationship between longitudinal coping and outcomes. METHODS: We conducted a secondary analysis of longitudinal data from 160 patients with high-risk AML enrolled in a supportive care intervention trial to describe coping strategies longitudinally across the illness course. We used the Brief COPE questionnaire, the Hospital Anxiety and Depression Scale, the Post-Traumatic Stress Disorder (PTSD) Checklist-Civilian Version, and the Functional Assessment of Cancer Therapy-Leukemia to measure coping strategies, psychological distress, and quality of life (QoL) at baseline and at weeks 2, 4, 12, and 24 after diagnosis. Electronic health records were used to assess healthcare utilization and end-of-life (EoL) outcomes, and multivariate analyses were used to assess the relationship between coping and outcomes. RESULTS: Longitudinal utilization of approach-oriented coping strategies was significantly associated with less distress (anxiety: ß, -0.18; P<.001; depression symptoms: ß, -0.42; P<.001; PTSD symptoms: ß, -0.60; P<.001) and better QoL (ß, 2.00; P<.001). Longitudinal utilization of avoidant coping strategies was significantly associated with greater distress (anxiety: ß, 0.64; depression symptoms: ß, 0.54; PTSD symptoms: ß, 2.13; P<.001 for all) and worse QoL (ß, -4.27; P<.001). Although the use of approach-oriented and avoidant coping strategies was not significantly associated with hospitalization, chemotherapy administration, or hospice use in the last 30 days of life, approach-oriented coping was associated with lower odds of ICU admissions (odds ratio, 0.92; P=.049). CONCLUSIONS: Longitudinal use of approach-oriented coping strategies was associated with less psychological distress, better QoL, and a lower likelihood of ICU admission, suggesting a possible target for supportive oncology interventions. Coping strategies did not impact EoL outcomes, and further research is needed to elucidate which patient factors impact EoL decision-making.


Subject(s)
Leukemia, Myeloid, Acute , Quality of Life , Humans , Adaptation, Psychological , Anxiety/psychology , Depression , Leukemia, Myeloid, Acute/therapy , Quality of Life/psychology , Clinical Trials as Topic
7.
Blood Adv ; 6(7): 2435-2442, 2022 04 12.
Article in English | MEDLINE | ID: mdl-34768282

ABSTRACT

Patients diagnosed with acute myeloid leukemia (AML) face sudden-onset life-threatening disease that requires intensive treatments. Although their early disease trajectory is characterized by significant, toxic side effects, limited data are available describing coping strategies among patients with AML and how these inform patient-reported outcomes. We used cross-sectional secondary data analyses to describe coping in 160 patients with newly diagnosed high-risk AML. The Brief COPE, Hospital Anxiety and Depression Scale, Post-Traumatic Stress Disorder Checklist-Civilian Version, and Functional Assessment of Cancer Therapy-Leukemia were used at time of AML diagnosis to measure coping strategies, psychological distress, and quality of life (QOL), respectively. The median split method for distribution of coping domains and multivariate regression models were used to assess the relationship between coping and patient-reported outcomes. Participants (median age, 64.4 years) were mostly non-Hispanic White (86.3%), male (60.0%), and married (73.8%). Most (51.9%) had high utilization of approach-oriented coping strategies, whereas 38.8% had high utilization of avoidant coping strategies. At time of diagnosis, use of approach-oriented coping was associated with less psychological distress (anxiety, ß = -0.262, P = .002; depression symptoms, ß = -0.311, P < .001; and posttraumatic distress disorder symptoms, ß = -0.596, P = .006) and better QOL (ß = 1.491, P = .003). Use of avoidant coping was associated with more psychological distress (anxiety, ß = 0.884, P < .001; depression symptoms, ß = 0.697, P < .001; and posttraumatic distress disorder symptoms, ß = 3.048, P < .001) and worse QOL (ß = -5.696, P < .001). Patients with high-risk AML use various approach-oriented and avoidant coping strategies at time of diagnosis. Use of approach-oriented coping strategies was associated with less psychological distress and better QOL, suggesting a possible target for supportive oncology interventions.


Subject(s)
Leukemia, Myeloid, Acute , Quality of Life , Adaptation, Psychological , Anxiety/etiology , Anxiety/therapy , Cross-Sectional Studies , Humans , Leukemia, Myeloid, Acute/drug therapy , Male , Middle Aged , Quality of Life/psychology
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