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Chapter 6 examines the regulation of access to controlled and prohibited substances for symptomatic relief and palliative care. It argues that restrictive drug control policies, especially uniform drug prohibition, are incompatible with disability rights because they are discriminatory against disabled people in pain. The chapter concludes that permitting a wider range of controlled substances to be accessed by people with impairments, especially those eligible for assisted dying, strengthens their right to live in the world by giving them greater options to live with their conditions.
To explore the spirituality issues among cancer patients undergoing cancer treatment at Ocean Road Cancer Institute (ORCI), Dar es Salaam, Tanzania.
Methods
This was a qualitative study involving purposively selected cancer patients receiving treatment at ORCI, Dar es Salaam, Tanzania. Data were collected through one-to-one audiotaped interviews using a pilot-tested semi-structured interview guide. Data saturation was reached at the 24th interview. Thematic data analysis was used.
Results
Twenty-four cancer patients attending ORCI, consisting of 12 males and 12 females, aged 18–65, participated in the study. The majority of participants, 71% (n = 17), had low education, 71% (n = 17) were of low socioeconomic status, and 83% (n = 20) were either Christians or Muslims. Six broad themes emerged: aspects of life contributing to meaning and purpose of life, beliefs surrounding cancer, effects of cancer on spirituality, spirituality in relation to seeking health care, spirituality and coping with cancer, and spirituality needs of cancer patients.
Significance of results
Cancer patients at ORCI face significant spirituality issues and hold misconceptions about the causes and treatment of cancer. Palliative care practitioners must routinely identify and address spiritual issues of cancer patients in order to improve the quality of life of cancer patients.
The setting in which patients face the end of life (EOL) is shaped by complex, individualized needs beyond physical care. Mr. X, a man in his mid-50s with glioblastoma, endured treatment complications and progressive decline. Supportive care was engaged to manage symptoms and support his wife, Mrs. X, who was simultaneously the family’s financial provider and caregiver for both her husband and their autistic adult son. As his condition worsened, she resisted hospice and code status changes, citing emotional, logistical, and financial barriers, while fiercely advocating for his wish to die in the hospital. Counseling and empathic validation helped her share her burdens and reframe her advocacy as rooted in love and grief. She ultimately consented to comfort-focused care, and Mr. X died peacefully in the hospital after a 31-day stay. This case underscores the need to integrate psychosocial factors into individualized EOL planning and to strengthen person-centered care.
This study aims to systematically identify patient-reported end-of-life (EOL) care needs of patients with incurable illnesses, and advocate for a person-centered approach to care in Bangladesh.
Method
This cross-sectional study was conducted in four tertiary care hospitals across Bangladesh and included 301 adult patients who had at least one of the following serious and complex incurable conditions: stage III or IV cancer, congestive heart failure (NYHA Class IV), end-stage liver disease, chronic renal failure requiring hemodialysis, stroke, oxygen-dependent pulmonary disease, or any type of dementia. Specific domains of EOL care needs were identified in relation to patients’ functional status using multinomial logistic regression. Differences in EOL care needs across socio-demographic and symptom profiles were analyzed using independent t-tests and one-way ANOVA.
Results
All patients had a Needs Near the End-of-Life Care Screening (NEST-13) score ≥30, indicating a high level of EOL care need. High levels of unmet needs were reported in domains such as doctor–patient communication (89.4%), goals of care (78.1%), spiritual needs (77.4%), and caregiving (66.4%). Patients with longer disease duration (>12 months) and higher symptom burden had significantly higher NEST scores (p < 0.001). Functional status strongly influenced care needs. Multinomial regression confirmed physical care needs (OR = 10.59), caregiving (OR = 3.40), and spiritual needs (OR = 2.81) were most strongly associated with terminal status (PPS ≤ 20%).
Significance of the result
This study reveals an overwhelming burden of unmet EOL care needs among patients with incurable diseases in Bangladesh. The findings emphasize the urgent necessity for holistic, culturally sensitive, and person-centered care, alongside the integration of palliative care into mainstream healthcare services.
This chapter focuses on the challenges and experiences of caregiving in dementia, emphasizing the importance of protecting caregiver health and well-being. It discusses effective communication strategies, provides a list of useful web-based educational resources for caregivers, and explores direct and indirect caregiver support interventions. The chapter highlights the need for better support and resources for caregivers, including access to respite care and palliative care services. It also provides strategies for healthcare providers to better engage and support caregivers. Overall, the chapter emphasizes the need to prioritize caregiver health and well-being in dementia care to improve outcomes for both caregivers and individuals with dementia.
End-of-life (EOL) care for critically ill individuals is shaped by socioeconomic, legal, and cultural factors for Koreans in South Korea and Korean Americans (KA) in the United States. This scoping review thematically synthesized critical care literature from Korea and community-based literature involving KAs to inform culturally tailored EOL and palliative care research and practice.
Methods
Following the updated JBI scoping review guidance, we reviewed English and Korean articles across seven databases. Due to the lack of critical care studies involving KAs, the scope of U.S. studies was broadened to all healthcare settings. We conducted a thematic synthesis to identify cross-context cultural insights that are potentially transferable from Koreans in critical care to KAs with similar needs.
Results
Evidence on EOL care for Koreans in critical care and for KA communities across U.S. settings was limited. Korea-based critical care studies (N = 23) highlighted physician-initiated decision-making, minimal advance care planning, and a lack of direct patient perspectives. U.S.-based studies (N = 26) focused on hypothetical palliative care preferences among older, community-dwelling KAs, with limited attention to critical care. Both contexts revealed shared cultural preferences for family-centered decision-making, physician-led discussions, and indirect communication about diagnosis and prognosis. Further research is warranted to investigate within-group heterogeneity and preference shifts across illness trajectories to inform culturally tailored EOL interventions for KAs.
Significance of results
Findings highlight the need for culturally and structurally informed approaches to improve EOL care in both Korea and the U.S. This cross-context analysis demonstrates how evidence from the heritage country can inform research and practice for immigrant and minoritized populations when domestic data are sparse. Strength-based approaches grounded in community values, combined with culturally specific insights from Korean literature, may enhance culturally responsive support for KA patients and families.
To evaluate the accessibility and acceptability of implementing a telephone-based psychological support intervention for patients with metastatic cancer in the Indian palliative care settings.
Materials and methods
The present single centered experimental study was conducted on 181 adult metastatic cancer patients who were referred to the pain and palliative medicine department by medical oncologists at a tertiary hospital, India. The patients were purposely assigned to two groups: In Group-A 90, patients received a combination of palliative and psychological support. In Group-B, 91 patients received only structured palliative care. As per the department protocol, patients in each group were followed up on days 0, 7, 14, 21, and 28. Before each session, patients completed questionnaires that are based on disease-related symptoms and psychological well-being.
Results
It was found out that patients with telephone based psychological support integrated with palliative care has shown gradual improvement in physical and psychological symptoms from day 7 to day 28 when compared to the control group with p-value < 0.05. Additionally, 67% of patients continued their follow-up with the psychologist, indicating the accessibility and acceptability of the treatment. Furthermore, 87% of patients preferred voice calls over video calls because of the limited internet access (N = 72%).
Conclusion
Therefore, it can be concluded that the combined approach of pain management through palliative care and continuous telephone based psychological support has contributed to their holistic well-being.
Significance of results
The findings highlight that integrating telephone-based psychological support within palliative care services is both feasible and acceptable for patients with metastatic cancer in India. This approach not only improves physical and psychological outcomes but also enhances the continuity of care, especially in resource-limited settings where in-person psychological services may not always be accessible.
Behavioral health needs are highly prevalent among individuals receiving long-term services and supports (LTSS), yet palliative care (PC) models in these settings often underemphasize psychiatric symptom management. This study explores interdisciplinary staff perspectives on behavioral health as a core domain of PC across nursing home and Program of All-Inclusive Care for the Elderly (PACE) sites.
Methods
We conducted a secondary analysis of a multi-site survey assessing PC needs across 13 LTSS sites within a large health system in New York State. We examined 5 survey items related to psychiatric symptom management, analyzing frequency, comfort, perceived benefit, and training interest. Multivariable logistic regression was used to assess associations between staff characteristics and behavioral health-related outcomes.
Results
Among 597 respondents, 60.5% reported that over half of their patients could benefit from psychiatric symptom management, and nearly half (49.2%) reported managing such symptoms weekly or more. Forty percent identified psychiatric symptom management as one of the top three ways PC specialists could help their patients, and 44.6% expressed interest in further behavioral health training as part of further PC training. Prior professional experience with PC was associated with greater recognition of behavioral health needs among patients (aOR 1.6), greater likelihood of managing psychiatric symptoms (aOR 2.0), and greater comfort doing so (aOR 1.5).
Significance of results
Behavioral health emerged as a salient and frequently encountered domain of serious illness care among LTSS staff, particularly in nursing home and PACE settings. Staff with prior PC experience were more engaged and confident in addressing psychiatric symptoms. Findings underscore the need for PC models in LTSS to better integrate behavioral health – through training, interdisciplinary collaboration, and care delivery redesign – to meet the complex needs of medically and psychiatrically vulnerable populations.
Despite the increasing implementation of consultation-based hospice palliative care teams in tertiary hospitals of Korea, there is limited research on their impact on self-determination respect rates. Understanding this impact is crucial for improving end-of-life care practices and respecting patient autonomy. The aim of this study is to assess the trends in self-determination respect rates regarding advance care planning before and after the introduction of a consultation-based hospice palliative care team in a tertiary hospital.
Methods
A retrospective observational study was conducted using medical records from a tertiary hospital in Korea from March 2018 to December 2023. The study included all patients aged 19 years and older with medical records at a tertiary hospital during the specified period. We examined the characteristics of patients referred to the palliative care team, the effects of the consultation-based hospice palliative care team on the completion rates of advanced care planning, and changes in self-determination respect rates.
Results
Following the introduction of the consultation-based hospice palliative care team, 411 patients were referred. The proportion of patients with completed advance care planning increased from 27.0% to 60.6% (p < 0.001). The overall number of advanced care planning completions and the self-determination respect rate also showed a marked increase, particularly from 2021 to 2022, when the respect rate spiked from 27.6% to 43.2%.
Significance of Results
Introduction of a consultation-based hospice palliative care team improved the respect for patient self-determination in end-of-life care decisions. These findings support the integration of hospice care teams in tertiary hospitals to enhance early and informed end-of-life decision-making.
Palliative care enhances life, but rural Australia faces significant inequities, and psychosocial distress, an important yet often overlooked aspect, is under-recognized in these settings. This study examines how psychosocial distress evolves in rural palliative patients using the Death and Dying Distress Scale (DADDS).
Methods
A longitudinal study was conducted with palliative care patients in rural hospitals on Australia’s east coast. Distress levels were measured using DADDS at multiple timepoints. Mixed-effects models assessed distress trajectories, while survival analyses (Weibull model) examined whether average distress changes predicted survival duration. For comparability, DADDS scores in mixed-effects models were standardized (0–100%), whereas survival analyses used raw total score changes.
Results
Adjusted mean total DADDS was 37.14 ± 22.67, with highest distress in fear of suffering and pain (49.95 ± 26.56) and lowest in fear of sudden death (30.26 ± 30.24). Distress followed a U-shaped trajectory: peaking early (52.68), declining mid (29.85) and late stages (28.26), then rising near death (53.05) (EMMs). Statistically significant changes included declines from early to mid-stage (β = −22.84, p = 0.007) and increases from late to near-death (β = 24.79, p = 0.003). Distress increased most from late to near-death in fear of suffering and death (β = 27.38, p = 0.006) and declined most from early to mid-stage in fear of dying (β = 28.01, p = 0.007). Higher distress correlated with shorter survival; each one-point increase in distress linked to a 6.97% survival reduction (time ratio = 0.930, β = −0.070, p < 0.001).
Significance of results
Psychosocial distress peaks in early palliative care and near death and is associated with reduced survival. Support should prioritize fears of suffering and pain during these stages, address fear of the dying process earlier, and remain attentive to persistent concerns such as loss of time and opportunity.
The growing integration of artificial intelligence (AI) and patient-reported digital tools (ePROMs and ePREMs) in palliative care offers new opportunities for personalised care yet also raises profound ethical and philosophical concerns. This paper examines how emerging technologies intersect with the concept of human dignity at the end of life, proposing an expanded notion of post-biographical dignity.
Methods
Ethical-philosophical analysis based on critical readings of AI ethics, narrative medicine, and the philosophy of technology.
Results
While digital tools such as ePROMs and ePREMs offer potential for richer, more person-centred care, they also risk reducing patients to data points and predictive profiles. Digital processes increasingly shape the narrative, vulnerability, and memory of the dying person. Post-biographical dignity calls for a reconceptualization of care that includes memory, relational continuity, and ethical engagement with digital remains.
Significance of Results
End-of-life care in the age of AI must move beyond autonomy-focused ethics to encompass the narrative, relational, and posthumous dimensions of dignity. A critical, philosophically informed ethics is essential to prevent depersonalisation in digitally mediated care.
Psychospiritual distress affects many patients with cancer, contributing to diminished quality of life, decreased survival and a desire for hastened death. The current standard of care, which primarily consists of antidepressants and psychotherapy, has demonstrated only modest benefits. Psilocybin-assisted therapy (PAT) has shown evidence of rapid, durable, and significant effects on measures of both depression and anxiety in this patient population.
Methods
A 51-year-old man diagnosed with metastatic lung cancer, referred to palliative care (PC) with a prognosis of less than 6 months, experienced depression and anxiety in the context of demoralization and existential distress. His suffering persisted despite psychotherapy and treatment with 100 mg of sertraline. He was granted access to PAT through Health Canada’s Special Access Program (SAP) and was treated with 25 mg of oral psilocybin in a homecare setting, with preparative and integrative therapy prior to and following the PAT session.
Results
PAT was well tolerated, with significant decreases in both anxiety and depression. The patient subjectively reported a sustained reduction in suffering and improved well-being at 2 months post-intervention.
Significance of results
PAT, when utilized within an appropriate therapeutic framework, may be safely delivered at home and may serve as an effective and long-lasting treatment for symptoms of anxiety and depression associated with psychospiritual symptoms of existential distress in PC. Future studies should examine differences in outcomes between clinical and homecare settings for PAT, and could include creating practice guidelines and protocols for home-based PAT.
As both human longevity and diagnostic ability improve, more individuals are being diagnosed with Alzheimer’s dementia disease (Alzheimer’s). Yet there is a paucity of new Alzheimer’s research trials. One obstacle to research is the large number of Alzheimer’s patients deemed incapable of providing informed consent for clinical research. Research advance directives (RADs) offer patients the opportunity to provide informed consent before incapacity occurs. However, critics question whether RADs guarantee informed consent, claiming that due to the nature of the disease, the consenting agent is no longer the same person after becoming incapacitated. This paper assesses the debate while using a conception of personhood, informed by the latest Alzheimer’s research, which does not reduce the concept of personhood to psychological capacities. It explains how personal identity can persist despite Alzheimer’s, such that RADs can and should suffice for informed consent.
The LGBTQIA+ community faces pervasive discrimination, including in healthcare settings. This discrimination can be particularly detrimental during hospice and palliative care, where patients are especially vulnerable and may have distinct needs related to their sexual orientation or gender identity.
Objectives
This study aimed to identify the barriers and enablers to accessing equitable and inclusive palliative care for LGBTQIA+ individuals.
Methods
A self-administered online survey was conducted in November 2023 among LGBTQIA+ adults residing in Portugal. Thematic analysis was applied to identify barriers and enablers, mapped using an adapted socioecological framework.
Results
Fifty-five respondents participated, primarily cisgender women (49.1%) identifying as homosexual (50.9%), with most aged 18–34 (76.4%). Barriers included caregiver homophobia, lack of LGBTQIA+-specific knowledge among professionals, fear among patients, misaligned care priorities, exclusion of partners from decision-making, and limited access to care. Enablers involved professional LGBTQIA+-specific training, psychological support, integration of partners or chosen families in care, workforce diversity, dissemination of palliative care information, community engagement, and inclusive societal values.
Significance of results
Inclusive and responsive palliative care is essential to addressing the unique needs of LGBTQIA+ individuals. The findings highlight the need for systemic reforms to advance equity in care. The study calls for mandatory LGBTQIA+-focused training for healthcare providers, recognition of chosen families in care decisions, and public health campaigns that promote inclusivity. Collaboration with LGBTQIA+ organizations to improve outreach and access is vital, along with legislative measures to ensure equitable and inclusive care.
While many siblings of children with cancer demonstrate resilient outcomes, they also face their own unique experiences that increase their risk for acute and long-term psychosocial difficulties. It is accepted that children undergoing cancer treatment experience suffering, the alleviation of which is a main goal of palliative care, yet research has not yet explored whether siblings experience their own suffering. This work aimed to determine whether parents perceive that their child(ren) without cancer suffered throughout the illness course and how that suffering would be described.
Methods
Using literature and expert input, a survey was developed to elicit caregivers’ perceptions of suffering in their children with and without cancer and was disseminated through the American Childhood Cancer Organization. Responses regarding sibling suffering were analyzed, considering differences in accounts between bereaved caregivers and those whose child with cancer remains living.
Results
A total of 202 parents (81 bereaved, 121 whose child with cancer remains alive) responded. Themes of sibling suffering include disconnection and/or displacement, lack of stability and certainty, emotional consequences, bearing witness, and lasting impact. One distinct theme, suffering as continued loss, emerged from bereaved parents’ responses.
Significance of results
Both parental groups described sibling suffering similarly despite different outcomes for their child with cancer. The idea of sibling suffering by bearing witness to what the child with cancer experienced is unique and worthy of further understanding. This work highlights the need for sibling and parent psychosocial assessment and palliative intervention throughout cancer treatment. Gaining longitudinal input from siblings and parents regarding the experience of suffering is a critical next step to develop tailored interventions.
The diagnosis of an advanced life-threatening illness brings with it existential challenges that activate the attachment system and different attachment styles influence coping with advanced illness.
Objectives
The objective of this work were (a) to analyze the influence of attachment styles of patients with advanced disease and their relatives on emotional distress and other psychological and existential aspects, and (b) to identify the most used assessment instruments to measure it, highlighting those with better psychometric properties in palliative care contexts.
Methods
Articles on attachment published from October 2005 to February 2025 using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide (PRISMA) were identified by searching PubMed, PsycINFO, Google Scholar, SCOPUS, Dialnet, and the Web of Science databases.
Results
Of 1847 studies identified, 24 were included (21 quantitative and 53 qualitative). Quality assessment revealed low risk of bias and high methodological quality. The main results indicated that a secure attachment style was associated with better coping, adaptation and adjustment strategies to the experience of illness, causing a buffering effect on suffering at the end of life. In contrast, patients with insecure attachment styles presented higher levels of emotional distress, demoralization, existential loneliness, death anxiety and showed a poorer psychological adaptation to cancer. Almost two-thirds of the studies (65.1%) used some version of Experiences in Close Relationships (ECR) scale.
Significance of results
The attachment theory appears to offer a valuable conceptual framework for understanding how individuals may respond to the emotional and relational demands associated with advanced illness and end-of-life care. Its contributions have been increasingly considered in literature addressing psychosocial adjustment and coping in palliative contexts
For the assessment of attachment styles in a palliative context, the most used instrument is the original ECR-M16 scale or its iderived versions.
Duloxetine is the only agent for chemotherapy-induced peripheral neuropathy (CIPN) recommended by the American Society of Clinical Oncology. As a moderate inhibitor of cytochrome P450 isoenzyme 2D6, duloxetine is theorized to decrease the efficacy of tamoxifen, which may be used to treat estrogen receptor–positive breast cancer. A case prompted our team to review the literature to elucidate the risks and benefits of duloxetine use in patients with this cancer.
Methods
We present the case of a patient with estrogen receptor–positive breast cancer who was doing well on duloxetine for CIPN. Due to concern for the possible future need for tamoxifen, she was switched to multiple other agents, including venlafaxine, without success.
Results
Ultimately, the patient was switched back to duloxetine due to persistent CIPN symptoms. The theoretical risk of tamoxifen interaction with duloxetine has not been demonstrated to be clinically significant in the literature.
Significance of results
While emerging evidence suggests venlafaxine may prove an effective alternative, duloxetine remains the agent with the strongest evidence of benefit in patients with CIPN and must remain an option in this patient population.
Dignity Therapy (DT) helps reframe and give meaning to the illness process of the terminally ill individual. This study aims to evaluate the effect of DT on meaning in life scores and, additionally, to assess how much DT can alleviate physical and emotional symptoms in cancer patients undergoing palliative care.
Methods
This was a before-and-after clinical trial, involving the recruitment of 30 patients hospitalized in a palliative care unit, who filled out the Edmonton Symptom Assessment Scale (ESAS) and the Meaning in Life Scale (MiLS) both before and after the implementation of DT.
Results
Of the 40 patients invited to participate in the study, DT was completed by 30 (75%) participants: 22 (73%) women and 8 (27%) men. Eighteen (60%) patients died during hospitalization, while 12 (40%) were discharged. When analyzing the factors correlated with the MiLS scores, a positive association was identified between the emotional and physical domains of the ESAS, and a negative association with the total ESAS score, spiritual ESAS score, male gender, higher educational level, and a cancer diagnosis duration (>6 years).
Significance of results
DT contributed to clinically relevant improvement, albeit not statistically significant, observed in emotional and spiritual well-being, as well as in the meaning of life. This underscores the importance of considering DT for palliative care patients nearing death.
The purpose of this study is to examine the existing literature on end-of-life dream experiences and bucket list fulfillments among terminally ill individuals receiving hospice and/or palliative care.
Methods
A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping reviews (PRISMA-ScR). An electronic search of literature was generated from EBSCO databases published until June 2024. Studies were included if they described and evaluated the effects of bucket lists and/or end-of-life wish fulfillment.
Results
This review identified 2,234 studies, and 11 of these were included in the review. Four major themes were established using thematic content analysis: (1) impact on holistic well-being, (2) role of family in wish fulfillment, (3) cultivation of gratitude, and (4) collaborative leadership in wish fulfillment. In wish fulfillment, the results significantly pointed to the need for more intricate evaluation among patients and interventions that cover beyond the physical aspect.
Significance of results
Palliative and hospice care settings should work toward securing sustainable funding for structured wish-fulfillment programs to address existing accessibility gaps and further enhance the holistic nature of care in these settings. Wish-fulfillment interventions represent a powerful tool in enhancing dignity and holistic experiences for terminally ill patients. Future research efforts could strengthen programs ensuring every individual is able to achieve a sense of peace, fulfillment, and closure during their care trajectory.