Objective: There are limited data on patient-reported outcomes near the end of life in patients with gynaecologic cancers. This study aimed to assess the symptom burden in the last 6 months of life in a real-world cohort.
Methods: Patients diagnosed with metastatic gynaecologic malignancies from 2016 to 2019 who completed the revised Edmonton Symptom Assessment System (ESASr) questionnaire within 6 months of death in a large Canadian province were identified. Patient-reported symptom scores were categorized as none to mild (0–3) and moderate to severe (4–10). Individual symptoms were subsequently grouped into physical, psychological, and total subscores. The severity of symptoms was further analyzed for any associations with age, time to death, and primary tumour site (ovarian vs. uterocervical and vulvovaginal).
Results: We identified 107 patients with gynaecologic malignancies including 59 ovarian, 29 uterocervical, and 19 vulvovaginal cancers. The median ages at diagnosis and questionnaire completion were 64 and 65 years, respectively. The median time from completing the ESASr questionnaire to death was 65 days. Overall, physical and psychological symptoms were moderate to severe in 57.9% and 40.2% of patients, respectively. Among the individual symptoms, tiredness was the most commonly reported moderate to severe symptom (74.9%), while shortness of breath was least commonly reported (31.6%). While physical (P < 0.001) and total symptom (P = 0.009) subscores were more likely to be moderate to severe in intensity as death approached, the psychological subscore (P = 0.744) had no relationship with time to death. Longer time to death was predictive of lower physical (P = 0.002) and total symptom (P = 0.002) subscores, while a primary uterocervical cancer site was associated with a lower psychological symptom subscore (P = 0.042).
Conclusions: In the real-world setting, unique symptom trajectories can emerge for patients with gynaecologic cancer near the end of life. Knowledge of these specific symptom patterns can help inform the development and delivery of targeted palliative interventions to improve quality of life for these patients.
OBJECTIVES: To identify sources used by patients with advanced or metastatic gynecologic cancer to learn about palliative care and to evaluate for differences in knowledge about palliative care and palliative care utilization by knowledge source.
METHODS: Gynecologic cancer patients receiving treatment for advanced or metastatic gynecologic cancer at a single academic medical center were surveyed about their awareness of and knowledge about palliative care. Medical chart review was conducted.
RESULTS: Of the 111 women surveyed, 70 had heard of palliative care (63%). Sixty-eight specified from where they learned of palliative care: cancer care (n=28, 41.2%), word of mouth (n=26, 38.2%), work (n=6, 8.8%), self-education (n=4, 5.9%), personal experience (n=2, 2.9%) or don't know (n=2, 2.9%). Knowledge about palliative care (p=0.35) and palliative care utilization (p=0.81) did not differ by awareness of palliative care.
CONCLUSION: Most women receiving treatment for advanced gynecologic cancer have heard of palliative care from sources other than their cancer care providers. Knowledge about palliative care and source of knowledge about palliative care were not associated with palliative care utilization. Awareness of palliative care and palliative care utilization may be improved by increasing the low rate of health provider-based education and engaging cancer patients' social networks.
Introduction: Palliative care is an important aspect of gynaecological oncology practice. In order to successfully integrate end-of-life (EOL) care in the disease trajectory, it is crucial to incorporate systematic training in subspecialty programmes in gynaecological oncology. We aimed to evaluate the quality of training in palliative care across gynaecological oncology fellows in Europe and to provide a framework to facilitate learning opportunities.
Methods: A web-based questionnaire was sent to members of the European Network of Young Gynae-Oncologists (ENYGO). The survey consisted of 36 items covering six domains: respondents’ characteristics, quality and quantity of teaching, curriculum achievements, observation and feedback, EOL clinical practice and attitudes about palliative care.
Results: Of the 703 clinicians enrolled in the study, 142 responded (20.2%). Although the majority worked in university hospitals, only half of them (47%) were in a formal subspecialty programme. The majority of respondents (60%) were trained without a mandatory rotation in palliative care units and considered the quality of EOL care teaching as ‘very poor’ or ‘poor’ (57.7%). The majority of respondents (71.6%) did not receive any supervision or feedback at the time of their first consultation on changing the goals of care.
Conclusion: Our study underlines lack of structured teaching and supervision in palliative care contents among European fellows in gynaecological oncology. Broad education of healthcare providers is a key factor to achieve the integration of palliative care in gynaecological oncology practice. Stakeholders like European Society of Gynaecological Oncology/ENYGO play an important role to facilitate educational activities and training programmes targeting to EOL care.
For patients with recurrent ovarian cancer, the goals of chemotherapy include palliation of disease-related symptoms with minimum treatment-related side effects. However, there is currently a paucity of data regarding the initiation of palliative chemotherapy. This study aimed to compare the differences in survival rates and toxicities between patients with recurrent ovarian cancer who started palliative chemotherapy immediately versus those who received delayed chemotherapy. Through a retrospective chart review, patients who received more than three lines of chemotherapy were included. Based on the timing of third-line chemotherapy initiation, the patients were divided into two groups: delayed (DTG) and immediate (ITG) treatment groups. The chi-square test or Fisher's exact tests, and t-test or Mann-Whitney U test were used for comparing variables, as appropriate. The Kaplan-Meier method was used for survival analysis. P-value of <0.05 was considered significant. Although there was no statistically significant difference, the total number of regimens and cycles was lower in the DTG than in the ITG. No differences in toxicities and survival rates were observed between the two groups. Overall, survival and toxicity did not differ significantly between the two groups. In a palliative care setting, our findings suggest that delaying the treatment had no adverse effect on survival. Despite the lack of evidence of a survival benefit with aggressive treatment, patients chose to continue chemotherapy. Because recurrent ovarian cancer is a complex condition, patients require sufficient explanation and time to fully understand the costs and benefits related to aggressive chemotherapy.
CONTEXT: Advanced gynecologic malignancies can cause significant vaginal bleeding. Radiotherapy (RT) is often used to palliate symptoms, but limited data exists concerning the optimal dose and expected time to bleeding hemostasis in this population.
OBJECTIVES: 1) To investigate the overall hemostasis response and kinetics of hemostasis in women with gynecologic malignancies receiving palliative RT. 2) To compare the efficacy of short-course RT (SCRT, =5 fractions, >3.5 Gy per fraction) versus conventionally fractionated long-course regimens (>5 fractions).
METHODS: We identified women receiving palliative RT for bleeding gynecologic malignancies. Initial and maximal hemostasis responses (IHR and MHR) were recorded and categorized as progressive bleeding (PD), stable disease (SD), partial response (PR), or complete response (CR). Clinical variables were correlated with response or toxicity using binary logistic regression statistical methods.
RESULTS: 33 women (median age 63) were identified between 2010-2019. Median follow-up and survival after RT were 131 days. 54.5% (18/33) received SCRT. Median time to IHR was 5 days (2.5 days with SCRT) and 78.8% (26/33) responded during treatment. Median time to MHR was 13 days. 100% achieved PR or CR at MHR. Rates of CR were similar between SCRT (83%) and conventionally fractionated schedules (87%). Average durability of hemostatic control was 5.4 months. Overall rate of rebleeding and Grade 3+ toxicity was 9.1% (3/33 each).
CONCLUSION: Women receiving SCRT for bleeding gynecologic malignancies achieved rapid symptom control (often during treatment) with minimal rebleeding. In a population whose median survival is 4 months, SCRT effectively addresses symptomatic disease while minimizing patient burden and toxicity.
Objective: To examine the association between physical activity and the reported use of complementary medicine by patients with breast and gynecological cancer referred or self-referred to a complementary/integrative medicine (CIM) consultation within a palliative care context.
Methods: Retrospective observational study analyzing the medical files of patients referred to a CIM consultation provided within a specialized integrative oncology clinic for demographic and cancer-related parameters; participation in physical exercise and activities; and current use of nonconventional medical practices. Quality of life (QoL) outcomes were assessed during the initial CIM consultation by using the Edmonton Symptom Assessment Scale (ESAS) tool.
Results: Among the 162 patient files examined, participation in physical activities was reported in 152, of whom 83 were identified as active and 69 inactive according to the American Cancer Society guidelines. A logistic multivariate regression model showed that physical activity was associated with higher rates of herbal/dietary supplement use for noncancer-related outcomes (odds ratio = 7.21, 95% confidence interval [CI] 1.6–32.46, p = 0.01); more frequently reported use of acupuncture for cancer-related outcomes (odds ratio = 7.79, 95% CI 1.93–31.5, p = 0.004); and lower ESAS scores for well-being (odds ratio = 0.77, 95% CI 1.0.65–0.92, p = 0.004), indicating better QoL.
Conclusion: Physical activity was found to be associated with a greater use of CIM (specifically herbal/dietary supplement use and acupuncture) in patients with breast and gynecological cancer during oncology treatment. Further research is needed to explore whether CIM use and physical activity are influenced by patients' health-belief models of care, and whether the CIM consultation can promote physical activity among these patients.
OBJECTIVE: To determine factors associated with the utilization of palliative care (PC) in patients with metastatic gynecologic cancer who died while hospitalized.
METHODS: Data were abstracted from the National Inpatient Sample database for patients with cervical, uterine, and ovarian cancers from 2005 to 2011. Chi-squared and logistic regression models were used for statistical analyses.
RESULTS: Of 4559 women (median age: 65 years; range: 19-102), 1066 (23.4%) utilized PC. Patients were 24.9% low socioeconomic status (SES), 23.9% low-middle, 23.7% middle-high, and 25.1% high SES. Medicare, Medicaid, and private insurance coverage were listed at 46.2%, 37.5%, 11.3% of patients; 36.2%, 21.1%, 18.1%, 24.6% were treated in the South, West, Midwest, and Northeast. Over the 7 year study period, the use of PC increased from 12% to 45%. Older age (odds ratio [OR]: 1.36; 95% CI: 1.11-1.68; P = .003), high SES (OR: 1.41; 95% CI: 1.12-1.78; P = .003), more recent treatment (OR: 9.22; 95% CI: 6.8-12.51; P < .0001), private insurance (OR: 1.81; 95% CI: 1.46-2.25; P < .001), and treatment at large-volume hospitals (OR: 1.36; 95% CI: 1.04-1.77; P = .02), Western (OR: 2.00; 95% CI: 1.61-2.49; P < .001) and Midwestern hospitals (OR: 1.35; 95% CI: 1.08-1.68; P = .001) were associated with higher utilization of PC.
CONCLUSIONS: The use of inpatient PC for patients with gynecologic cancer increased over time. The lower utilization of PC for terminal illness was associated with younger age, lower SES, government-issued insurance coverage, and treatment in Southern and smaller volume hospitals, and warrants further attention.
Introduction: Patients with cervical cancer in the early period of diagnosis (0–3 months) often show denial, thus leaving the patient less cooperative with the treatment plan.
Objective: This study aims to identity the acceptance response whose diagnosed cervical cancer.
Method: This study is qualitative research study with phenomenological approach. Sampling was conducted by purposive sampling with a sample size of 12 participants. Data were collected using semi-structured in-depth interviews. Thematic analysis was performed using Collaizi steps.
Result: The themes that emerged were formulated based on the participants’ answers to interview questions and field notes during the interview process. This research produces 7 (seven) themes: responsibility, efforts to seek treatment, support, source of information, commitment, obstacles, and hope.
Conclusion: The emotional stability of cervical cancer patients was fluctuated and the feelings of loss occurred repeatedly even after reaching the acceptance state. Good self-adjustment enhance respondent's acceptance of their disease and bringing new hope for their life, so cervical cancer patients will have a positive expectation in his life. The role of health workers is important in the adjustment of early-diagnosed patients with cervical cancer by providing health education and consultation services related to the condition of the illness.
Objective: Women with advanced gynecologic cancer and malignant bowel obstruction (MBO) undergo repeated hospitalizations, experience feelings of isolation and abandonment, and often die in acute settings. Innovative outpatient models of care are needed to address the unmet needs of this population at the end-of-life. We implemented a novel supported self-management (SMS) program focused on increasing patients' skill and confidence in managing MBO proactively in the ambulatory setting.
Methods: We performed a qualitative descriptive study embedded in a prospective single-arm evaluative trial (Clinicaltrials.gov ID: NCT03260647) to understand the impact of this program on patients' sense of support, degree of distress, quality of care, and capacity to self-manage. Semi-structured interviews were completed and analysed using the Chronic Care Model as a theoretical framework. Data saturation was confirmed after 15 interviews.
Results: Fifteen patients (age range: 47–82) with diagnoses of advanced ovarian, endometrial, and cervical cancer were interviewed; 10 had died by end of follow-up, with a median interval from interview to death of 5 months. Patients were able to self-manage the: (i) medical aspects; (ii) psychological consequences, and (iii) changes in life roles and expectations resulting from their condition. Patients felt greatly supported, less isolated, and secure in their knowledge and ability to access care due to SMS. While patients understood their disease was not curative they did not fully appreciate that MBO signalled a significantly poorer prognosis.
Conclusion: Outpatient SMS interventions can be successfully implemented even for rapidly fatal conditions at the end-of-life and offer significant benefit to gynecologic cancer patients with MBO. Counselling should focus on the specific trajectory of MBO, and early palliative care referrals should be standard practice.
Introduction: Poorer end-of-life (EOL) care for elderly cancer patients has been reported. We assessed the impact of age on 13 indicators for the quality of EOL care as well as adherence to 6 national quality indicators in gynaecological cancer patients.
Methods: Age-dependent differences in 13 palliative care quality indicators were studied in gynaecological cancer patients registered in the population-based Swedish Register of Palliative Care. Association between the patient’s age and each quality indicator was analyzed by logistic regression, adjusted for place of death where appropriate. Adherence to six national quality indicators determined by the Swedish National Board of Health and Welfare was estimated in all patients.
Results: We included 3940 patients with the following age distribution: 1.6% were 18–39 years of age, 12.3% 40–59 years, 37.2% 60–74 years, 28.9% 75–84 years and 20% were =85 years. Age-dependent differences in implementation rate were present for some of the 13 quality indicators. Compared to elderly cancer patients, younger patients were more likely to be cared for by a specialized palliative care service, more often informed about imminent death as well as assessed for pain. For most national quality indicators, the goal level was not met. Only for the ‘on demand prescription for pain’, the goal level was reached.
Conclusions: EOL care did not meet national quality indicators in this population-based data from Sweden, in particular in the elderly population. Elderly gynaecological cancer patients are at high risk of poorer EOL care without the involvement of specialized palliative care services. Palliative care services need to be implemented across all institutions of EOL care to ensure good and equal care.
Background: It remains unclear whether the end-of-life (EOL) treatment/environment impacts on survival after anticancer treatment in terminally ill women with ovarian carcinoma (OC).
Objective: The aim of this investigation was to clarify how long those women actually survived after their last anticancer treatments and their hallmarks.
Setting, Design, and Measurements: Between 2003 and 2011, 79 terminally ill women with OC were retrospectively analyzed as a single institutional study. Postcancer treatment survival (PCS), defined as the duration between the last date of the abovementioned “cancer treatment” and that of death from any cause, was analyzed on stratification by type of supportive care or where patients spend their EOL. Inverse probability of treatment weighting (IPTW)—adjusted Kaplan–Meier and Cox regression analyses were employed to compare PCS between the two groups.
Results: The median PCS of patients was 10.8 weeks. In the multivariable analysis, the performance status and EOL place retained their significance as independent prognostic factors of poorer PCS (performance status [2–3/0–1]: hazard ratio [HR] = 3.279 [95% confidence interval; CI 1.967–5.586; p < 0.0001], EOL place [hospital/home hospice]: HR = 0.574 [95% CI 0.355–0.913; p = 0.0188]). In the IPTW-adjusted cohort, the median PCS rates were 15.0 and 9.7 weeks in patients of home/hospice and hospital groups, respectively (p = 0.04). Also in the IPTW cohort, the EOL place retained its significance (IPTW-adjusted: HR [95% CI]: 1.548 [1.009–2.374], p = 0.045, multivariable adjusted with IPTW: HR [95% CI]: 1.670 [1.077–2.588], p = 0.022).
Conclusion: Our current data may be hypothesis generating; it is possible that the EOL environment is a crucial prognostic factor for survival after anticancer treatment.
Background: Cervical cancer is mostly diagnosed at advanced stages among the majority of women in low-income settings, with palliative care being the only feasible form of care. This study was aimed at investigating palliative care knowledge and access among women with cervical cancer in Harare, Zimbabwe.
Methods: Sequential mixed methods design was used, consisting of two surveys and a qualitative inquiry. A census of 134 women diagnosed with cervical cancer who visited two cancer treating health facilities and one palliative care provider in Harare between January and April, 2018 were enrolled in the study. Seventy-eight health workers were also enrolled in a census in the respective facilities for a survey. Validated structured questionnaires in electronic format were used for both surveys. Descriptive statistics were generated from the surveys after conducting univariate analysis using STATA. Qualitative study used interview/discussion guides for data collection. Thematic analysis was conducted for qualitative data.
Results: Mean ages of patients and health workers in the surveys were 52 years (SD = 12) and 37 years (SD = 10,respectively. Thirty-two percent of women with cervical cancer reported knowledge of where to seek palliative care. Sixty-eight percent of women with cervical cancer had received treatment, yet only 13% reported receiving palliative care. Few women with cervical cancer associated treatment with pain (13%) and side effects (32%). More women associated cervical cancer with bad smells (81%) and death (84%). Only one of the health workers reported referring patients for palliative care. Seventy-six percent of health workers reported that the majority of patients with cervical cancer sourced their own analgesics from private pharmacies. Qualitative findings revealed a limited or lack of cervical cancer knowledge among nurses especially in primary health care, the existence of stigma among women with cervical cancer and limited implementation of palliative policy.
Conclusions: This study revealed limited knowledge and access to palliative care in a low-income setting due to multi-faceted barriers. These challenges are not unique to the developing world and they present an opportunity for low-income countries to start considering and strategizing the integration of oncology and palliative care models in line with international recommendations.
OBJECTIVES: In non-gynecologic cancers, clinical trial participation has been associated with aggressive care at the end of life. The objective of this investigation was to examine how trial participation affects end of life outcomes in patients with ovarian cancer.
METHODS: In a retrospective review of women diagnosed with ovarian cancer at our institution between January 2010 and December 2015, we collected variables identified by the National Quality Forum as measures of aggressive end of life care including chemotherapy in the last 14 days of life, intensive care unit (ICU) admission in the last 30 days of life, or death in the acute care setting. Trials investigating medications but not surgical interventions were included. The primary outcome of this study was the association between trial participation and the National Quality Forum measures of aggressive end of life care in ovarian cancer decedents. Data were analyzed with univariable and multivariable parametric and non-parametric testing, and time to event outcomes were analyzed using the Kaplan-Meier method and Cox's proportional hazard models.
RESULTS: Among 391 women treated for ovarian cancer, 62 patients (16%) participated in a clinical trial. Patients enrolled in clinical trials were more likely to have chemotherapy administered within 14 days of death; however, no association was found with other metrics of aggressive care at the end of life including the initiation of a new chemotherapy regimen in the last 30 days of life, ICU admissions, and death in an acute care setting. Among patients with recurrent ovarian cancer, median overall survival for trial participants was 57 months compared with only 31 months in non-trial participants (p<0.001).
CONCLUSIONS: In patients with ovarian cancer, clinical trial enrollment is associated with chemotherapy administration within 14 days of death, but not other measures of aggressive care at the end of life. Given the importance of clinical trial participation in improving care for women with ovarian cancer, this study suggests that concerns regarding aggressive care prior to death should not limit clinical trial participation.
Le cancer du col utérin est fréquent chez les jeunes femmes en zone rurale et vu souvent au stade tardif. La présente étude avait pour objectif de questionner les facteurs responsables des souffrances physiques et psychologiques de ces patients en fin de vie. La question de la fin de vie qui fait référence ici aux soins palliatifs reste une des perspectives non négligeable de sa prise en charge. Il s'agit d'une étude qualitative et rétrospective à visée descriptive et concerne une série de trois cas de cancer du col de l'utérus suivis à l'hôpital Saint Vincent de Paul au cours de l'année 2017. Les données ont été collectées à partir des dossiers de soins des patientes. Ces données ont été analysées selon la méthode de création et gestion de code-books et plus particulièrement le codage par catégories ontologiques. Les résultats de ce travail nous ont permis d'accuser les facteurs tels que le retard de la suspicion et du diagnostic du cancer du col utérin, la difficulté d'accès aux soins holistiques ainsi que la précarité sociale comme prétexte des souffrances physiques et psychologiques que connaissent ces patientes reçues dans le milieu éloigné des métropoles en fin de vie. Cette étude permet d'insister sur les approches de soins palliatifs comme composante incontournable de la prise en charge en milieu rural.
Background: Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO.
Methods: This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers.
Results: Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8–506) and for those 17 on HPN was 156 days (range 46–506).
Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state.
Conclusions: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.
INTRODUCTION: Electrochemotherapy involves the use of transient tumor permeabilization via electric pulses in combination with low-dose chemotherapeutic agents. It has recently emerged as an alternative treatment modality in vulvar cancer. The aim of this meta-analysis was to ascertain the effectiveness of electrochemotherapy in the context of palliative care.
METHODS: The following databases were searched: MEDLINE, Scopus, and Cochrane Database, to identify all registered articles pertaining to palliative vulvar cancer treatment with electrochemotherapy from inception until August 2019, in line with PRISMA guidelines. A single-proportion meta-analysis was performed for the outcomes of overall response, complete response, partial response, stable disease, and progressive disease raterespectively, using the random-effect model. Sensitivity analysis was performed to address heterogeneity.
RESULTS: Four studies were included totaling 104 women. The studies were of moderate quality. Pooled results from four studies rendered a summary proportion of 78.8% (95% CI 70.4% to 86.1%) for the outcome of overall response. The median age ranged between 68 and 85 years. The sample size per study ranged between eight and 61 women. The tumors' histological types included: squamous-cell carcinoma (96.2%), Paget's disease (2.9%), and malignant melanoma (0.9%). A total of 65 patients (62.5%) presented with a single nodule, whilst 39 patients (37.5%) presented with multiple nodules. Eighty-nine women (85.6%) were previously submitted to other treatment modalities. The overall response rate ranged from 73.2% to 80.9%. The pooled proportion for the outcomes of complete and partial response rate was 48.7% (95% CI 30.74% to 61.5%) and 30.2% (95% CI 21.7% to 39.4%), respectively. The follow-up ranged from 1 to 51 months. No severe adverse effects were reported. The safety profile of electrochemotherapy was favorable.
CONCLUSIONS: Electrochemotherapy is an effective and minimally invasive treatment modality in the palliative care management of patients with vulvar cancer. The effective control of vulvar tumors by electrochemotherapy may contribute to improvement of quality-of-life. In light of the moderate quality of evidence, a multi-center cooperation is warranted to confirm its palliative benefit.
Background: Awareness of disease status has been identified as a factor in the treatment decision-making process. Women with recurrent ovarian cancer are facing the challenge of making treatment decisions throughout the disease trajectory. It is not understood how women with ovarian cancer perceive their disease and subsequently make treatment decisions.
Purpose: The purpose of this phenomenological study was to understand the lived experience of women with recurrent ovarian cancer, how they understood their disease and made their treatment decisions.
Methods: A qualitative design with a descriptive phenomenological method was used to conduct 2 in-depth interviews with 12 women (n = 24 interviews). Each interview was ~60 minutes and was digitally recorded and professionally transcribed. Data collection focused on patients' understanding of their disease and how patients participated in treatment decisions. A modified version of Colaizzi's method of phenomenological reduction guided data analysis.
Results: Three themes emerged to describe the phenomenon of being aware of disease status: (1) perceiving recurrent ovarian cancer as a chronic illness, (2) perceived inability to make treatment decisions, and (3) enduring emotional distress.
Conclusions and Implications: This study revealed how 12 women conceptualized recurrent ovarian cancer as a chronic disease and their perceived inability to make treatment decisions because of lack of information and professional qualifications, resulting in enduring emotional distress. Future research should replicate the study to confirm the persistence of the themes for racially, ethnically, and religiously diverse patient samples and to improve understanding of awareness of disease status and decision-making processes of patients.
The patient wanted to hear opera arias because they were a reflection of what she once was.
We were alone in the room: just me, her, and my flute. I played her the most ethereal melodies from opera’s storied repertoire. She recognized them. She smiled. She warmed up, perhaps for the first time since entering the hospital.
The patient was a 60-year-old woman with ovarian cancer. When I first met her, she had already been in the hospital for 2 weeks. Diagnosed as having recurrent small bowel obstruction and having undergone exploratory surgery, her prognosis did not look good. Members of the multidisciplinary medical team—the palliative care physician, oncologist, chaplain, social worker, and nurses—were all having trouble getting through to her. They reported that she was unwilling to accept the fact that there was no more curative treatment for her cancer.
OBJECTIVE: To describe the change over time in place of death (hospital, home, hospice) among all women in the United States who died of gynecologic malignancies and compare them with other leading causes of female cancer deaths.
METHODS: This is a retrospective cross-sectional study using national death certificate data from the Mortality Multiple Cause-of-Death Public Use Record Data. All women who died from gynecologic, breast, lung, and colorectal cancers were identified according to International Classification of Diseases, 10 Revision, cause of death from 2003 to 2015. Regression analyses with ordinary least-squares linear probability modeling were used to test for differences in location of death over time, and differences in trends by cancer type, while controlling for age, race, ethnicity, marital status, and education status.
RESULTS: From 2003 to 2015, 2,133,056 women died from gynecologic, lung, breast, and colorectal malignancies in the United States. A total of 359,340 died from gynecologic malignancies, including ovarian cancer (n=188,366 [52.4%]), uterine cancer (n=106,454 [29.6%]), cervical cancer (n=52,320 [14.6%]), and vulvar cancer (n=12,200 [3.4%]). Overall, 49.2% (n=176,657) of gynecologic cancer deaths occurred at home or in hospice. The relative increase from 2003 to 2015 in the rate of deaths at home or in hospice was 47.2% for gynecologic cancer deaths (40.5% in 2003 to 59.5% in 2015). In adjusted analyses, the trend in the percentage of deaths at home or in hospice increased at a rate of 1.6 percentage points per year for gynecologic cancer deaths (95% CI 1.5-1.6) vs 1.5 (95% CI 1.4-1.5, P<.001), 1.4 (95% CI 1.4-1.5, P<.001), and 1.5 (95% CI 1.4-1.5, P=.09) percentage points per year for lung, breast, and colorectal cancer deaths, respectively.
CONCLUSION: Between 2003 and 2015, there was a 47.2% increase (40.5-59.5%) in the rates of gynecologic cancer deaths occurring at home or in hospice. This trend may represent an increase in advance care planning and value-based treatment decisions.
OBJECTIVE: To evaluate associations between US region of residence and urbanization and the place of death among women with gynecologic malignancies in the United States.
METHODS: A retrospective cross-sectional study was performed using publicly available death certificate data from the National Center for Health Statistics. All gynecologic cancer deaths were included from 2006 to 2016. Comparisons among categories were performed with a two-tailed chi-square test, with p-values <0.05 considered significant.
RESULTS: From 2006 to 2016, 328,026 women died from gynecologic malignancies in the US. Of these deaths, 40.1% (n = 134,333) occurred in the patient's home, 24.9%(n = 81,823) in the hospital, and 11.3% (37,188) in an inpatient hospice facility. Place of death varied by geographic region. The Northeast had the largest percentage of gynecologic cancer patients (31.3%) die as a hospital inpatient. The West had the highest percentage of deaths (49.3%) at home. Deaths in a hospice facility were the highest (14.1%) in the South. Place of death varied by urbanization; patients residing in large central metro or rural counties were the most likely to die during hospital admission (28.7% and 27.1%, respectively). Patients living in medium-sized metro areas were the least likely to die in hospitals (21.8%) and most likely to die in a hospice facility (14.3%). All comparisons were significant by study definition.
CONCLUSION: The place of death for patients with gynecologic malignancies varies by US region and urbanization. These disparities are multifactorial in nature, likely influenced by both sociodemographic factors and regional resource availability. In this study, however, rural and central metro areas are identified as regions that may benefit from further hospice development and advocacy.