The purpose of this study was to describe disrespectful, inadequate, and abusive care to seriously ill patients who identify as transgender and their partners.

A cross-sectional mixed methods study was conducted. The sample included 865 nurses, physicians, social workers, and chaplains. Respondents were asked whether they had observed disrespectful, inadequate, or abusive care due to the patient being transgender and to describe such care.

Of the 21.3% of participants who reported observing discriminatory care to a transgender patient, 85.3% had observed disrespectful care, 35.9% inadequate care, and 10.3% abusive care. Disrespectful care included insensitivity; rudeness, ridicule, and gossip by staff; not acknowledging or accepting the patient’s gender identity or expression; privacy violations; misgendering; and using the incorrect name. Inadequate care included denying, delaying, or rushing care; ignorance of appropriate medical and other care; and marginalizing or ignoring the spouse/partner.

These findings illustrate discrimination faced by seriously ill transgender patients and their spouse/partners. Providers who are disrespectful may also deliver inadequate care to transgender patients, which may result in mistrust of providers and the health-care system. Inadequate care due to a patient’s or spouse’s/partner’s gender identity is particularly serious. Dismissing spouses/partners as decision-makers or conferring with biological family members against the patient’s wishes may result in unwanted care and constitute a Health Insurance Portability and Accountability Act of 1996 (HIPAA) violation. Institutional policies and practices should be assessed to determine the degree to which they are affirming to both patients and staff, and revised if needed. Federal and state civil rights legislation protecting the LGBTQ+ community are needed, particularly given the rampant transphobic legislation and the majority of states lacking civil rights laws protecting LGBTQ+ people. Training healthcare professionals and staff to become competent and comfortable treating transgender patients is critical to providing optimal care for these seriously ill patients and their spouse/partner.

To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home.

To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities.

Analysis of stakeholders’ insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital.

Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers’ structural imaginations about what it means to die well at home in Canada.

Early integration of palliative and cancer care improves the quality of life and is facilitated by discussions about the end of life after cessation of active cancer treatment between patients with advanced cancer and their physicians. However, both patients and physicians find end-of-life discussions challenging. The aim of this study was to assess the need for a question prompt list (QPL) that encourages end-of-life discussions between patients with advanced cancer and their physicians.

Focus group interviews (FGIs) were conducted with 18 participants comprising 5 pancreatic cancer patients, 3 family caregivers, 4 bereaved family members, and 6 physicians. Three themes were discussed: question items that should be included in the QPL that encourages end-of-life discussions with patients, family caregivers, and physicians after cessation of active cancer treatment; when the QPL should be provided; and who should provide the QPL. Each interview was audio-recorded, and content analysis was performed.

The following 9 categories, with 57 question items, emerged from the FGIs: (1) preparing for the end of life, (2) treatment decision-making, (3) current and future quality of life, (4) current and future symptom management, (5) information on the transition to palliative care services, (6) coping with cancer, (7) caregivers’ role, (8) psychological care, and (9) continuity of cancer care. Participants felt that the physician in charge of the patient's care and other medical staff should provide the QPL early during active cancer treatment.

Data were collected to develop a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.

One of the side effects of opioid administration is opioid-induced constipation (OIC). To address this side effect, the oral peripheral μ opioid receptor antagonist naldemedine was developed. As this drug does not cross the blood–brain barrier, it is thought that it does not lead to opioid withdrawal syndrome (OWS) with central nervous system symptoms.

Here, we report a cancer patient who presented with symptoms centered round anxiety and irritation 4 months after administration of naldemedine for OIC and who was diagnosed with OWS after close investigation.

The patient was a 65-year-old female who had surgery for stage IB endometrial cancer 4 years previously, but experienced recurrence involving the pelvis 2 years later. Medical narcotics were used to control pain, but naldemedine was started to control subsequent constipation. When naldemedine-related OWS was suspected and the administration of naldemedine discontinued, the above symptoms disappeared within two days, and no recurrence was observed thereafter.

For patients receiving naldemedine, it is necessary to consider the possibility of OWS regardless of the period of administration in order to maintain patient quality of life.

To identify the patients who are most likely to participate in discussions about palliative care (PC) and advance care planning (ACP), and to determine their preferred timing and approach of discussion.

The study included women aged 18–75 years diagnosed with breast cancer. In the quantitative phase, sociodemographic and clinical characteristics, knowledge, decision-making, and stigmas were evaluated. The qualitative phase included questions about patients’ understanding, timing, and method of discussing PC and ACP, which were analyzed by Bardin’s content analysis.

In Phase 1, a total of 115 participants were included, with 53.04% completing both phases and 46.96% declining further participation. Those who completed both phases exhibited higher rates of marriage and educational attainment, while those who declined Phase 2 had a higher prevalence of advanced-stage cancer and palliative treatment. Completion of both phases was associated with a greater knowledge of reality and increased awareness of PC and ACP. Furthermore, the qualitative analysis revealed 5 convergent themes: timing, demystification, patient empowerment, misconception elimination, and open communication. These themes informed the development of a conceptual model that provides a framework for discussing PC and ACP with patients at different stages of cancer diagnosis and treatment, highlighting appropriate and inappropriate approaches and timing.

Early discussion is beneficial, but withholding information or infringing on autonomy should be avoided. The study reveals that married and highly educated individuals tend to be more receptive to these discussions. However, patients with late-stage cancer tend to decline participation. Patients value open communication, demystification of PC, and empowering discussions that eliminate misunderstandings. Efforts should be made to reach patients with limited familiarity, particularly those with late-stage cancer, to increase their receptiveness to enable well-informed decision-making.

Percutaneous tunneled drainage catheter (PTDC) placement is a palliative alternative to serial paracenteses in patients with end-stage cancer and refractory ascites. The impact of PTDC on quality of life (QoL) and long-term outcomes has not been prospectively described. The objective was to evaluate changes in QoL after PTDC.

Eligible adult patients with end-stage cancer undergoing PTDC placement for refractory ascites completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and McGill Quality of Life instruments before PTDC placement and at 2 to 7 days and 2 to 4 weeks after PTDC. Catheter function, complications, and laboratory values were assessed. Analysis of QoL data was evaluated with a stratified Wilcoxon signed-rank test.

Fifty patients enrolled. Survey completion ranged from 65% to 100% (median 88%) across timepoints. All patients had a Tenckhoff catheter, with 98% technical success. Median survival after PTDC was 38 days (95% confidence interval = 32, 57 days). European Organization for Research and Treatment of Cancer scores showed improvement in global QoL (p = 0.03) at 1 week postprocedure (PP). Significant symptom improvement was reported for fatigue, nausea/vomiting, pain, dyspnea, insomnia, and appetite at 1 week PP and was sustained at 3 weeks PP for dyspnea (p < 0.01), insomnia (p < 0.01), and appetite loss (p = 0.03). McGill Quality of Life demonstrated overall QoL improvement at 1 (p = 0.03) and 3 weeks (p = 0.04) PP. Decline in sodium and albumin values pre- and post-PTDC slowed significantly (albumin slope –0.43 to –0.26, p = 0.055; sodium slope –2.50 to 1.31, p = 0.04). Creatinine values increased at an accelerated pace post-PTDC (0.040 to 0.21, p < 0.01). Thirty-eight catheter-related complications occurred in 24 of 45 patients (53%).

QoL and symptoms improved after PTDC placement for refractory ascites in patients with end-stage malignancy. Decline in sodium and albumin values slowed postplacement. This study supports the use of a PTDC for palliation of refractory ascites in cancer patients.

To encourage communication and contribute to the palliative care movement's need for interdisciplinary care, this article offers to explore the stance of volunteers on two fundamental concepts, “health” and “illness,” as well as their related understanding of “palliative care.” Volunteers' understandings are then compared with the concepts put forth by the Canadian Hospice Palliative Care Association (CHPCA) in its “Model to Guide Hospice Palliative Care.”

Focus groups with volunteers, and individual interviews with coordinators from five selected palliative care community action organizations from across Canada, are used. A total of 65 participants from three Canadian provinces were interviewed.

Participants view illness as a subjective, multidimensional, and transformative experience that requires multiple adjustments. It is an impediment to personal equilibrium and a challenge for the terminally ill and their close ones. Health, on the other hand, is a complex phenomenon that consists of physical, psychological, social, and spiritual well-being. For participants, health is most often embodied by a person's capacity to adjust to their challenging circumstances. Both volunteers and coordinators see palliative care as an alternative approach to care that centers on helping patients and their families through their ordeal by offering comfort and respite, and helping patients enjoy their life for as long as possible.

Participants describe illness as a destabilizing loss and palliative care as a means to compensate for the numerous consequences this loss brings; their actions reflect these principles and are compatible with the CHPCA model.

This study assessed the factor structure, internal consistency, and concurrent and discriminant validity of a scale used to measure social distress in Japanese head and neck cancer outpatients with facial disfigurement.

The sample included 225 Japanese outpatients with head and neck cancer, including 129 patients with facial disfigurement. Participants' level of social distress was assessed through our scale, the European Organization for Research and Treatment Cancer questionnaire (EORTC) QLQ-H&N35 and the Hospital Anxiety and Depression scale (HADS).

Factor analyses confirmed the structure of two subscales of the social distress scale. Social distress was significantly correlated with the social contact subscale of the EORTC QLQ-H&N35 and the HADS.

Results demonstrated preliminary reliability and validity of the social distress scale. This scale may extend social adjustment research by revealing its determinants and effects for head and neck cancer with facial disfigurement in Japan.

The aim of this study was to determine the frequency and factors associated with fall episodes in advanced cancer patients.

We analyzed data that included demographic characteristics, utilization of assistive devices, cancer diagnosis, metastatic site, performance status, medications including hypnotics and opioids, Edmonton Symptom Assessment Scale (ESAS) score, and Memorial Delirium Assessment Scale (MDAS) score in 384 consecutive patients who were newly referred to the Supportive Care Clinic at the MD Anderson Cancer Center from January 1 to December 31, 2009. All patients completed standardized forms to report falls within the last month. Multivariate backward regression analyses were employed to identify factors predictive of falls in advanced cancer.

The mean age of patients was 58 years, and 192 (50%) were male. Mean (SD)/median score for pain was 5 (2.8), 5; fatigue 5.6 (2.6), 6; sleep disturbance 5(2.7), 5; drowsiness 3.7(3), 3; and anorexia 5(3), 5. Some 31 patients (8%) reported fall episodes within the past month, 17 (55%) of whom reported the use of assistive devices. Using assist devices (OR = 5.5, 95% CI: 2.6–11.9, p < 0.0001) and taking zolpidem (OR = 3.39, 95% CI: 1.39–7.7, p = 0.008) were associated with an enhanced chance of falling. Higher MDAS score (4.00 vs. 1.42, p = 0.001) and MDAS positive screening for delirium (21 vs. 3.6%, p < 0.001) were also associated with falls. However, severity on the ESAS at the initial consult was not associated with falls.

We conclude that 31 of 384 patients (8%) with advanced cancer receiving outpatient supportive care reported falls in the previous month. Patients with assistive devices, taking zolpidem, and with a higher MDAS score, and a positive delirium screening reported more frequent falls. Further studies are warranted.

Hepatocellular carcinoma (HCC) presents a major health problem with its steadily increasing incidence in Western countries, and persistent high fatality rates worldwide. The well-recognized complexity and toxicity of its treatment as well as inadequate care and limited resources in mainland China exacerbate the difficulty of maintaining quality of remaining life of patients living with this illness. The goal of this comprehensive literature review was to identify promising clinical interventions for improving quality of life (QOL) of people with advanced HCC in mainland China.

A comprehensive literature review was performed in China Academic Journals (CAJ), Cochrane, and PubMed databases. The review was confined to studies of randomized controlled trials (RCT) for adults, in Chinese and English, from 1980 to 2012.

A total of 676 studies in Chinese and 391 studies in English were identified. Eighteen RCTs were selected for the final review, among which three were conducted in mainland China.

Nurse-led home-based comprehensive interventions using a collaborative care approach addressing multiple dimensions of QOL show promise for enhancing clinical outcomes for people with advanced HCC in mainland China. Education and psychosocial support combined with symptom management early in the illness trajectory and ongoing close attention to physical symptoms, emotional distress, as well as spiritual well-being are crucial for maintaining QOL of people with advanced HCC. Telephone monitoring appears to be a feasible way in rural as well as urban areas. Families are advised to be part of overall interventions. It is warranted that promising interventions aiming at improving QOL for advanced cancer patients reported in Western literature be further tested in mainland China.

Existing research on psychological distress and mental health service utilization has focused on common types of solid tumor cancers, leaving significant gaps in our understanding of patients experiencing rare forms of hematologic cancers.

To examine distress, quality of life, and mental health service utilization among patients with aggressive, refractory B-cell lymphomas.

Patients (n = 26) with B-cell lymphomas that relapsed after first- or second-line treatment completed self-report measures of distress (Hospital Anxiety and Depression Scale) and quality of life (Short-Form Health Survey, SF-12). Patients also reported whether they had utilized mental health treatment since their cancer diagnosis.

Approximately 42% (n = 11) of patients reported elevated levels of psychological distress. Of patients with elevated distress, only one quarter (27.2%; n = 3) received mental health treatment, while more than half did not receive mental health treatment (54.5%; n = 6), and 18.1% (n = 2) did not want treatment. Patients with elevated distress reported lower mental quality of life than patients without elevated distress [F (1, 25) = 15.32, p = 0.001].

A significant proportion of patients with advanced, progressive, B-cell lymphomas may experience elevated levels of distress. Yet, few of these distressed patients receive mental health treatment. Findings highlight the need to better identify and address barriers to mental health service utilization among patients with B-cell lymphoma, including among distressed patients who decline treatment.

The objective of our study was to determine the satisfaction levels of family members of patients with advanced-stage cancer.

This descriptive study was conducted in the palliative care and medical oncology clinics of a university hospital in the province of Izmir between April of 2011 and January of 2012. The study sample consisted of a total of 145 family members, who were selected from among the family members of patients with advanced-stage cancer receiving palliative treatment. The study data were obtained using the Patient Description Form and Family Satisfaction Scale during face-to-face interviews with patients.

Some 67% of patients were female and 33% male, 70% were married, 35% were high school graduates, and 34.5% were housewives. The average total family satisfaction score was 76.87 ± 1.14, and the average scores for the component variables were as follows: information giving 74.37 ± 1.28, availability of care 78.40 ± 1.17, physical care 78.99 ± 1.09, and psychosocial care 74.52 ± 1.30. We found a relationship between the level of satisfaction of family members and (1) gender, (2) occupation, (3) presence of someone supporting the care, and (4) possession of sufficient information about the patient (p < 0.05).

Satisfaction levels of participants were determined to be high. We found that family member satisfaction levels were affected by gender and occupation, the existence of someone supporting the care, and possession of sufficient information about the patient.

Hemato-oncologists are highly exposed to patients’ death and suffering during their daily work. The current exploratory and cross-sectional study examined death acceptance attitudes, in order to explore whether death acceptance attitudes are associated with fear of death.

A convenience sample of 50 Israeli hemato-oncologists currently working in a clinical setting participated in the study. They completed the Death Attitudes Profile revised questionnaire (DAP-R), which examines levels of fear of death, death avoidance, approach acceptance, neutral acceptance, and escape acceptance. In addition, the hemato-oncologists reported on levels of exposure to patients’ death and suffering.

A repeated measures MANOVA revealed significantly lower levels of neutral acceptance, compared with approach and escape acceptance. Path analysis for predicting fear of death by the other study variables revealed that death avoidance fully mediated the relationship between approach acceptance and fear of death as well as revealing a negative correlation between neutral acceptance and fear of death (higher neutral acceptance was related to lower fear of death). No associations were found between exposure to death and suffering and attitudes toward death.

In contrast to previous conceptualizations, the ability to adaptively cope with fear of death differed in accordance with death acceptance attitudes. Whereas neutral acceptance adaptively defended from fear of death, approach acceptance was associated with increased fear of death through death avoidance. As hemato-oncologists are highly exposed to patients’ death and suffering, and are required to make critical medical decisions on daily basis, these findings may have substantial implications for end-of-life care and the process of medical decision-making regarding the choice of treatment goals: cure, quality of life, and life prolongment. Further research is needed to investigate the role of death acceptance attitudes among hemato-oncologists.

Fatigue is frequently co-existing with other symptoms and is highly prevalent among patients with cancer and geriatric population. There was a lack of knowledge that focus on fatigue clusters in older adults with cancer in hospice care.

To identify fatigue-related symptom clusters in older adult hospice patients and discover to what extent fatigue-related symptom clusters predict functional status while controlling for depression.

This was a cross-sectional study in a sample of 519 older adult hospice patients with cancer, who completed the Memorial Symptom Assessment Scale, the Center for Epidemiological Studies Depression, Boston Short Form Scale, and the Palliative Performance Scale. Data from a multi-center symptom trial were extracted for this secondary analysis using exploratory factor analysis and hierarchical multiple regression analysis.

Data from 519 patients (78 ± 7 years) with terminal cancer who received hospice care under home healthcare services revealed that 39% of the participants experienced fatigue-related symptom clusters (lack of energy, feeling drowsy, and lack of appetite). The fatigue cluster was significantly associated positively with depression (r = 0.253, p < 0.01), and negatively with functional status (r = −0.117, p < 0.01) and was a strong predictor of participants’ low functional status. Furthermore, depression made a significant contribution to this predictive relationship.

Older adult hospice patients with cancer experienced various concurrent symptoms. The fatigue-specific symptom cluster was identified significantly associated with depression and predicted functional status. Fatigue should be routinely monitored in older adults, especially among hospice cancer patients, to help reduce psychological distress and prevent functional decline.

Given the great number of chronic care patients facing the end of life and the challenges of critical care delivery, there has been emerging evidence supporting the benefit of palliative care in the intensive care unit (ICU). We studied the relationship between the timing of a palliative care consult (PCC) and two utilization outcomes — length of stay (LOS) and pharmacy costs — in ventilator-assisted ICU patients.

A retrospective chart review was conducted (N = 90). Summed pharmacy costs were compared using a paired t test before and after PCC. Spearman correlations were performed between days to PCC and ICU LOS, ventilator days, and days to death following ventilator discontinuation.

Number of days from admission to PCC was correlated with total days on ventilator (ρ = 0.685, p < 0.0001) and total ICU LOS (ρ = 0.654, p < 0.0001). Number of days to PCC was correlated with pre-PCC total medication costs (ρ = 0.539, p < 0.0001). Median medication costs were significantly reduced after the PCC (p < 0.0001), from $230.96 to 30.62. Median medication costs decreased for all categories except for analgesics, antiemetics, and opioids. The number of patients receiving opioid infusion increased (37 vs. 90%) after PCC (p < 0.0001).

Earlier timing for PCC in the ICU is associated with a lower LOS through quicker mechanical ventilation (MV) withdrawal, presenting a unique opportunity to both decrease costs and improve patient care.

Studies identified barriers of pain reporting and use of analgesics impeding Chinese cancer patients to achieve optimal pain relief. No research has yet explored these issues in Chinese migrants, where cultural differences may exacerbate the barriers.

To explore cultural factors influencing Chinese migrants’ perspectives to cancer pain and its pharmacological management.

Informed by Leininger's Cultural Care Theory, focus groups and a short version of Barrier Questionnaire-Taiwan (S-BQT) were conducted in Mandarin or Cantonese, with 24 Chinese migrants receiving ambulatory cancer and/or palliative care services in Sydney, Australia. Integrated thematic analysis, descriptive statistics, and meta-inference were adopted for data analysis and integration.

Participants suffered uncontrolled cancer pain negatively affecting their physical and psychosocial well-being. Most experienced moderate to severe pain, but only a third used opioids. Most adopted non-pharmacological approaches and half used Traditional Chinese Medicine. Participants scored a mean S-BQT of 3.28 (standard deviation ± 0.89). Three themes and seven sub-themes contributed to higher barriers of pharmacological pain management: (1) Philosophical health beliefs (cancer pain are self-provoked and body can self-heal); (2) Cultural values and beliefs (cancer pain is inevitable, and Chinese people express pain differently to local people); and (3) Conflicting views on the use of opioids (culture-related negative medication beliefs, Western biomedical model-related opioid fears, and opioids extend life for people with terminal cancer pain).

Chinese migrants’ responses to cancer pain and attitudes towards opioids are complex. Culturally congruent strategies are needed to overcome culture-related barriers and improve quality of cancer pain care in this population.

Islamic population constitute more than 20% of the world population and is growing rapidly. Nevertheless, data concerning informal caregiving to older Muslim patients diagnosed with cancer are scarce. Improving the well-being of caregivers is a vital step to optimal care for the patients themselves throughout the Muslim community and the world. This study focuses on a sample of Palestinian caregivers of older Muslim patients diagnosed with cancer living in East Jerusalem, the West Bank, and Gaza. The study aims to describe the socio-demographic characteristics of the caregivers and to understand their social support, and identify predictors of caregivers’ depression.

A cross-sectional study of a convenience sample of 99 dyads of Palestinian patients (age ≥65) and their informal caregivers. Depression and social support were measured using the five items of the Geriatric Depression Scale and the Cancer Perceived Agents of Social Support questionnaire.

Caregivers were most frequently adult children (52%) or spouses (32%), with male patients cared for by spouses (47.5%) or sons (32%), and female patients by daughters (50%). Clinical levels of depression were reported by 76% of the caregivers and 85% of patients. The significant predictors of caregiver depression were female gender, lower education, lower perceived social support from spouse and family, and higher perceived support from faith.

Healthcare providers serving the study population should determine the position and role of the caregiver within the social and family structure surrounding the patients’ families. This understanding may facilitate overcoming barriers to effective and meaningful social support.

The care of seriously ill and dying people is an important task, especially in times of pandemics and regardless of the patients’ infection status. Before the SARS-CoV-2 pandemic, healthcare systems were not sufficiently prepared for the challenges of palliative and end-of-life care during a pandemic. The aim was to identify and synthesize relevant aspects and non-therapeutic recommendations of palliative and end-of-life care of seriously ill and dying people, infected and uninfected, and their relatives after one year into the pandemic to outline what actions, practices, and procedures were taken to deal with the pandemic and its consequences.

A scoping literature review following the methods of the PRISMA-ScR. The electronic literature search was conducted in 09/2020 and updated in 02/2021 using MEDLINE (Pubmed), with no restriction of publication date and eligibility criteria. In addition, a manual search was carried out.

A total of 280 studies met the inclusion criteria and three main aspects have emerged. The reduction of physical contact due to the risk of infection severely limited the work of palliative care professionals and solutions had to be found to maintain palliative and end-of-life care structures. This has been accompanied by strict visitor restrictions and the need to support patients, relatives, and enable contact. The third relevant aspect is the integration of specialist palliative care expertise into other clinical settings.

This scoping review demonstrates the need for basic palliative care training for every healthcare professional. It supports the importance of developing a national strategy for palliative care in pandemic times in every country, including the digitalization of the healthcare sector to offer telecommunication/telemedicine.