Background: Understanding end-of-life (EOL) and palliative care continues to grow. However, little attention has been paid to the experiences, preferences, and needs of older lesbian, gay, bisexual, transgender, and queer (LGBTQ) women. While some universal expectations or preferences at EOL exist, this population may not receive adequate or appropriate attention or reporting of unique EOL issues and experiences.
Objective: Systematically search for and narratively review existing evidence concerning the expectations, preferences, and needs for palliative and EOL care of LGBTQ older women.
Design: A comprehensive literature review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles reporting needs, experiences, and perspectives of palliative care and EOL care among LGBTQ older women were evaluated.
Measurements: Articles published between 1996 and 2019 were retrieved from PsycINFO, MEDLINE, Cochrane Library, Academic Search Complete, AgeLine, CINHAL, PubMed, LGBT Life, SocINDEX, Women's Studies International, Joanna Briggs Institute, and Open Grey.
Results: A total of 16 articles were included. Articles described several concerns for the overall LGBTQ population; however, additional issues and experiences specific to older LGBTQ women were also identified, including vulnerability associated with isolation and poverty, women's social needs and support networks, and preferences for complementary care.
Conclusion: There remains a need for further research with older LGBTQ women concerning palliative and EOL care, particularly around preparation for EOL and preferences for support. Inclusion of diverse populations in terms of sexual and gender identification are needed to fully understand how to provide appropriate and preferred support.
OBJECTIVES: Women with terminal cancer are assumed to choose hospice care over aggressive treatment at the end of life. With new chemotherapy and target therapy options, it becomes more difficult to decide between hospice care and aggressive management. It is also crucial to consider the cost increases leading to severe financial burdens on healthcare systems. To better understand treatment options at the individual level, this study set out to describe trends in end-of-life care for the four leading cancers in women in Taiwan.
STUDY DESIGN: This was a population-based retrospective cohort study.
METHODS: The data source was obtained between January 1, 2000, and December 31, 2013, from Taiwan's National Health Insurance Research Database. We identified 98,575 women with a diagnosis of breast (18,596), colorectal (23,734), liver and biliary (28,795) or lung (27,450) cancer who had died during the study period. Hospital data for services provided in the last 6 months of life, including hospice services and aggressive managements (chemotherapy, frequent hospitalisation, emergency room [ER] visits, intensive care unit [ICU] admission and endotracheal intubation), were collected.
RESULTS: Hospice utilisation increased over the study period, with 25.85%, 25.34%, 21.23% and 26.55% of female patients with breast, colorectal, liver and biliary, and lung cancer receiving hospice care, respectively. However, the number of women undergoing aggressive treatments in the last 6 months of life remained high, with the breast cancer group having the highest chemotherapy rate, the colorectal cancer group having frequent hospitalisation and the liver and biliary cancer group having frequent ER visits and ICU admissions.
CONCLUSIONS: Increasing hospice utilisation among women with the four most common cancers in Taiwan indicates that hospice services have gradually become well accepted over the past 13 years; however, the real focus is on the ineffective treatment preceding hospice care, and late referral was also a notable problem.
BACKGROUND: Diagnosis of perinatal anomalies is a stressful experience that can negatively affect mothers, families, health-care systems, and societies. Perinatal palliative care (PPC) is a new development in maternity services which focuses on emotional, spiritual, social, and symptom management and provides care for women and families with fetal anomaly diagnosis. Therefore, this study aimed to develop a service package for women with fetal anomaly diagnosis in socio-cultural context of Iran.
METHODS: This research is an exploratory mixed methods study with the qualitative-quantitative sequencing design that consists of four sequential phases. In the first phase, following a qualitative approach, the researcher will explore the needs and experiences of women with fetal anomaly diagnosis, their families, health care providers and policy-makers. At the second phase, based on the review of the literature, Program, guideline, service package and protocol for care of women and their families after perinatal anomaly diagnosis will be identified in other countries. In the third phase, recommendations from qualitative phase and literature review will be combined, the initial protocol of the palliative care service package for perinatal anomaly diagnosis will be identified and prioritized. In the fourth phase, the opinion of experts about this service package will be collected by using RAND/UCLA Appropriateness Method technique and the applicability of the service package's recommendations in clinical settings will be determined.
DISCUSSION: The results of this Mixed Methods study are expected response the needs and experiences of the women with perinatal anomaly diagnosis being met in the socio-cultural context of Iran and a service package for palliative care of these women developed.
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.
Chronic pain is among problems of old people and causes changes in their life pattern and processes. Teaching palliative care can help old people suffering from chronic pain to live an active life. The aim of this research was to determine effects of educating of palliative care on life pattern of elderly women with chronic pain. The present study was a Quasi-experimental design with pre-test and post test was conducted on 30 elderly women suffering from chronic pain in 2018 in Iran. The Questionnaire for evaluating the Pattern of Life with Pain in the elderly was filled before the intervention, group educating of palliative care was carried out using an educational package, and the questionnaire was completed again immediately and one and three months after. The data was analyzed using mean, standard deviations, Fisher's F test, and Greenhouse-Geisser and Bonferroni post-hoc test by employing SPSS- 16. Mean changes before teaching palliative care significantly differed from those of immediately and one and three months after the educational program (p = 0.0), (p = 0.004). There were significant differences between the stages of immediately and one month after the educational program and that of three months after it (p = 0.001), (p = 0.002). Concerning the personal life patterns, there were statistically significant differences between the stage immediately after the educational program and those before the intervention and three months after it (p = 0.005), (p = 0.000). Regarding the social life pattern, only the stage of one month after the educational program significantly differed from that of three months (p = 0.005). Mean growth in life pattern of the old women suffering from chronic pain in the stages after the intervention indicated the importance of and the necessity for palliative care during old age. Moreover, the success of this education three months after the educational program as compared to immediately and one month after it indicates that allocation of sufficient time plays a very important role in transferring information and in teaching methods of palliative care to old people.
The first time I met Emma, she showed me a video of her piano performance downtown; it was named “Brightness after the Dark.”
Emma was a pianist. She and her husband, Yusuf, left their country at the age of 21, when the war started. As a migrant, she took pride in sharing her gift with the world, now America. She trained long hours to perfect her sonatas.
Then her life took an unexpected turn. A stage III lung cancer was diagnosed when she was 37. By then, she and Yusuf had 4 children, ages 5 to 15. A single lobectomy and course of chemotherapy followed. She went back to her piano full time, trying to put her cancer journey behind her.
On Emma’s 10th cancer anniversary, a computed tomography scan of her chest showed a new spot in the opposite lung. Her time as a cancer survivor had come to an abrupt end. A biopsy showed that a second lung cancer, of a different cell type, was present. Staging scans and lymph node sampling suggested that her new tumor was operable. And that is when I met her.
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I explore the complexities of moral experience during the phase of life after a terminal diagnosis by examining the experiences of one woman living as a hospice patient in St. Croix, US Virgin Islands. Introducing the notion of “existential ambivalence,” I show that this can be a period of deep uncertainty, in which what matters to individuals can shift and fluctuate through time, not necessarily lining up with collective ideals of “the good death.” I focus on a promise this woman made that continued to pull her toward a version of living well while she was also pulled toward dying.
This study aims to elicit the beliefs and attitudes of middle-aged and elderly Moroccan Muslim women toward dying, death, and the afterlife; to identify whether differences are observable between middle-aged and elderly participants and to document how the actual attitudes of our participants relate to normative Islamic literature. Interviews were conducted with middle-aged and elderly Moroccan women living in Belgium (n = 30) and with experts in the field (n = 15). This study reveals that the belief in an omnipotent and omniscient God and in an afterlife strongly marks the attitudes of first- and second-generation Muslims in Belgium toward life and death.
In this article, I argue that a holistic strategy is needed to ascertain how implicit bias, on the part of health-care providers, and structural impediments work together to produce significant barriers to access to medical assistance in dying for marginalized groups—particularly those experiencing intersecting or interlocking forms of identity-based oppressions. In doing so, I also make the case that this kind of primary, patient-centered, and institutional research could benefit from the insights of critical feminism and materialist feminist theory by highlighting and challenging inequalities, opening up debate, and exploring new forms of knowledge production. It also offers a way to shape future research of medical assistance in dying, as it relates specifically to the study of how overlapping forms of structural and interpersonal marginalization (e.g., implicit bias), inclusive of race, gender, class, ethnicity, dis/ability, sexuality, and so on are expressed and experienced.
Death, disease and disaster can inflict anyone, anywhere and at any time. While occurrence of such an event could be absolved of any selective strike, the outcome reflects otherwise. Historical deprivations experienced by certain populations have caused more bereavement and sorrow to them than those who have experienced lesser or no deprivation. Therefore, the process which shapes the factors to yield such a result is important and needs to be understood for any policy suggestions and programmatic inputs. Loss of pregnancy and newborn inflicts sorrow and bereavement across space, time and social labyrinth. The degree of bereavement is likely to reduce with time, but space and social context govern the response to it. Therefore, factors contributing to the differentials vary in their demographic, social and economic characteristics. The loss of pregnancy and newborn remains inadequately addressed. Family and community play a significant role in coping. While the developed countries have institutional structure to address coping with the loss, the South Asian countries rely heavily on the family and the community for such support. The present review examines these trajectories across social groups.
To add to the dialogue regarding the long-term recovery and wellbeing of war and tsunami-affected women in Sri Lanka, we utilised the Conservation of Resources Theory (COR, Hobfoll, 2009) to inform an investigation of direct and indirect effects. The study was specifically designed to assess how traumatic exposure may represent a form of loss which may associate with related losses in the form of external and internal stigma which may then associate with poor mental health outcomes. The data for this study were collected in 2016 from a sample of 379 widowed women in Eastern Sri Lanka; participant spouses died in the civil war, in the tsunami, or from health or other problems. Our analyses yielded a model suggesting associations between remembered trauma event exposure from war and disaster, external stigma, internalised stigma and mental health symptom distress. Results further yielded direct and indirect effects suggesting that trauma may represent a form of loss, and potentially lead to distress through the weight and challenges of stigma.
Joseph Campbell taught us we are each a hero in our own epic story. Our life's adventures build meaning and purpose related to the role the characters in our story play in our lives.
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In the traditional/religious context of the Iranian society, dream plays a very important role. To understand its role, the purpose of this study was to discover the role of dreams in the lives of the bereaved and to reconstruct semantics. In this study, the qualitative approach and grounded theory have been considered. In this regard, the bereaved, whom their loved ones were passed away at least 4 months and at last 4 years, were studied by deep interviewing until data saturation occurs. Therefore, the findings of this study revealed the dualism of dream/awakening in the bereaved, which ultimately results in the deconstruction of the bereaved due to the spiritual interaction of the bereaved and the deceased.
This study investigated (a) whether significant health changes occur before imminent widowhood and (b) the effects of widowhood on the physical and psychological health of men and women = 50 years old. Generalized estimating equations were used to examine a matched-pair sample of the Taiwanese Elderly. We found that for men, the major effect of widowhood was on psychological health, but that for women, the major effect was on physical health. Psychological health was significantly worse for widowed than for non-widowed women, but not for men. The difference in psychological health between widowed and non-widowed women, however, changed before widowhood.
Grief following a death loss is a common experience that all individuals face at some point in life. There, however, are only a few in-depth studies regarding grief in cultures around the world and specific roles that rituals and beliefs related to death may have in the grieving process. Results of interview data from eight grieving Turkish women revealed three themes: (a) metaphors of loss, (b) funeral rituals, and (c) rituals in relation to control and personal factors. Overall, participants' sense of control appeared to influence their grief experiences and perceptions of rituals.
BACKGROUND: Women who suffer an out-of-hospital cardiac arrest receive bystander cardiopulmonary resuscitation (CPR) less often than men. Understanding public perceptions of why this occurs is a necessary first step toward equitable application of this potentially life-saving intervention.
METHODS: We conducted a national survey of members of the public using Mechanical Turk, Amazon’s crowdsourcing platform, to determine reasons why women might receive bystander CPR less often than men. Eligible participants were adults (=18 years) located in the United States. Responses were excluded if the participant was not able to define CPR correctly. Participants were asked to answer the following free-text question: “Do you have any ideas on why women may be less likely to receive CPR than men when they collapse in public?” Descriptive statistics were used to define the cohort. The free-text response was coded using open coding, and major themes were identified via classical content analysis.
RESULTS: In total, 548 subjects were surveyed. Mean age was 38.8 years, and 49.8% were female. Participants were geographically distributed as follows: 18.5% West, 9.2% Southwest, 22.0% Midwest, 27.5% Southeast, and 22.9% Northeast. After analysis, 3 major themes were detected for why the public perceives that women receive less bystander CPR. They include the following: (1) sexualization of women's bodies; (2) women are weak and frail and therefore prone to injury; and (3) misperceptions about women in acute medical distress. Overall, 41.9% (227) were trained in CPR while 4.4% reported having provided CPR in a medical emergency.
CONCLUSIONS: Members of the general public perceive fears about inappropriate touching, accusations of sexual assault, and fear of causing injury as inhibiting bystander CPR for women. Educational and policy efforts to address these perceptions may reduce the sex differences in the application of bystander CPR.
This study assessed the unique explanatory power of denial of disordered eating in understanding non-suicidal self-injury (NSSI) and suicidality. Undergraduate women (N = 360) completed an online survey about NSSI, suicide risk, disordered eating behaviors, and denial of disordered eating. Denial of disordered eating was associated with NSSI and suicidality above and beyond engagement in disordered eating alone and demographic covariates. This study provided support that denial of disordered eating behaviors assists in understanding risk for NSSI and suicidality. Campus programing might include psychoeducation about the negative consequences of denial and emphasize the importance of disclosure to trusted confidants.
In an effort to improve participation of younger breast cancer survivors in end of life (EOL) discussions and planning, this study evaluated the impact of The Shady Pink Elephant EOL educational series on participants' knowledge, attitudes and behaviors towards palliative care and EOL wishes. Data was gathered at baseline (pre survey and registration) following each event (post survey) and 6 months after the series as intervention (post survey). A total of 36 women with breast cancer, averaging 40 years of age, participated in the first online event, 24 in the second and 22 in the third. A total of 20 completed the 6-month post survey. Significant improvement in scores occurred from baseline to 6 months for the following items: belief that palliative care is only for those at the EOL, belief that EOL discussions are only important for those at the EOL, comfort with talking about EOL issues, confidence that EOL wishes will be honored by one's health care power of attorney and knowledge of characteristics are important in the person assigned as a person's health care power of attorney. The Shady Pink Elephant EOL educational series is therefore a promising intervention for improving EOL knowledge, attitudes and behavior. Further research with larger sample sizes is needed regarding understanding and accessing palliative care and deciding upon and communicating EOL wishes in this patient population.
Blanche Moncey est une pianiste qui voue sa vie à la musique. Quand elle découvre qu'elle est atteinte du sida, elle décide d'écrire un journal qu'elle tiendra jusqu'à sa mort. Elle se retourne sur son passé d'artiste et de femme, observe le monde qui l'entoure, l'évolution de sa maladie et réfléchit sur la musique qu'elle a servi avec passion.
Se sachant condamnée, l'auteure, souffrant d'une maladie neuro-dégénérative, découvre le poème d'E. Dickinson qui donne son titre à cet essai. Créatrice de son jardin en Toscane, elle trouve son havre de paix dans ces vers sur le jardinier et la mort. Avant de décéder dans sa propriété, elle se rapproche de plus en plus de son jardin et s'y réfugie, profitant jusqu'au bout de la beauté de la nature.