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Professional bereavement is a frequently overlooked yet significant experience among nurses, particularly in contexts involving serious illness and end-of-life care. Its impact on professional quality of life remains insufficiently understood. This study aimed to examine the relationship between professional bereavement and professional quality of life among nurses.
Methods
This descriptive correlational study was conducted with 176 nurses working in three hospitals in Ankara, Türkiye, between January and June 2022. Data were collected using the Professional Bereavement Scale and the Professional Quality of Life Scale. Pearson correlation and multiple linear regression analyses were performed to examine relationships and predictive effects.
Results
Nurses’ short-term reactions to professional bereavement were moderate, whereas cumulative effects were above average. Nurses with postgraduate education had significantly higher accumulated global change scores than those with a bachelor’s degree. Short-term bereavement reactions showed weak positive correlations with compassion satisfaction, burnout, and compassion fatigue, whereas cumulative changes showed moderate positive correlations with compassion satisfaction and compassion fatigue. Regression analysis indicated that both short-term and cumulative dimensions of professional bereavement significantly predicted professional quality of life, with cumulative changes explaining 30–38% of the variance in compassion fatigue.
Significance of results
Professional bereavement is a significant predictor of nurses’ professional quality of life, highlighting the need for bereavement-focused support to promote psychological well-being and sustainable care. This study uniquely demonstrates differential effects of short-term versus cumulative professional bereavement on compassion satisfaction, burnout, and compassion fatigue and suggests that postgraduate education may paradoxically increase vulnerability to cumulative grief among nurses.
This editorial highlights the UK’s drug regulatory double standards. Drugs for assisted suicide would bypass standard regulation despite limited evidence, while psychedelics face significant barriers despite promising evidence internationally. I argue that drugs for assisted suicide should meet the same regulatory standards, and psychedelics should be rescheduled to enable further clinical research.
To raise awareness of fertility preservation and counseling in palliative care and explore considerations for practice.
Methods
This case report describes the rapid decline and death of a 36-year-old man with astrocytoma. Despite early fertility discussions with the palliative care team, sudden clinical deterioration prevented semen collection prior to death. Following death, the spouse requested post-death sperm retrieval.
Results
Post-death sperm retrieval and cryopreservation were successfully completed within the viability window. To achieve this, urgent interdisciplinary coordination across palliative care, emergency medicine, reproductive specialists, and hospital legal and executive teams was required.
Significance of results
The case highlights the importance of early and ongoing fertility counseling for patients of reproductive age in palliative care. It demonstrates that clear pathways and coordinated systems can enable post-death sperm retrieval when aligned with patient and partner wishes. The development of evidence-based policies, training, and patient resources may reduce barriers and support clinicians to conduct sensitive, informed fertility discussions.
In this editorial, I examine the parallels between conventional and assisted suicide. Psychedelic therapy has been shown to alleviate end-of-life distress and reduce suicidality. I advocate for rescheduling psychedelics to enable research into their effectiveness as an adjunct to palliative care, prior to institutionalising assisted suicide in the UK.
Early integration of pediatric palliative care (PPC) offers significant benefits for children with cancer, yet referrals often occur late in the child’s cancer trajectory.
Objectives
As part of a larger project looking at barriers and facilitators to early integration of PPC, this study explored the perspectives of healthcare providers (HCPs) on the pros and cons of a universal referral system where all children with cancer are referred to PPC at diagnosis.
Methods
Using the grounded theory method, semi-structured interviews were conducted with 66 oncology and PPC providers across 4 tertiary cancer centers in Canada. Interviews were coded line-by-line to explore patterns and themes across the dataset.
Results
Three key benefits emerged that included: reducing stigma and normalizing PPC as standard care, fostering early relationship building with patients and families, and minimizing HCP subjectivity in making PPC referrals. Cons included the idea that universal referral was a poor use of resources, particularly for children with curable cancers, and that this system lacked usefulness for patients and families.
Significance of results
Universal referral can promote equitable, timely, and family-centered integration of PPC in pediatric oncology. However, these types of referral systems face substantial challenges, particularly around resources. There was also wide variation of opinions and acceptability of universal referral among providers. The adoption of standardized or tiered referral criteria, guided by disease risk, prognosis, or symptom burden, may represent a practical middle ground. Future work should evaluate the impact of such criteria-based referral models on patient and family outcomes, provider experiences, and healthcare resource use.
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.
The hospital setting is often perceived as slow to change. While employee-driven approaches offer a promising alternative to traditional top-down methods, guidance is limited. This study provides a description and formative evaluation of an employee-driven working group (WG) approach to tailor ward-specific measures to improve care in the dying phase. The aim is to evaluate the WG process and offer practical insights for transferability to other hospitals.
Methods
Formative mixed-methods evaluation of a WG process to tailor ward-specific evidence-informed measures on 10 wards outside specialized palliative care at 2 German medical centers. To analyze factors relevant for the WG process, the Consolidated Framework for Implementation Research 2.0 was applied. Data included baseline evaluation (medical record analysis, staff survey and focus groups, informal caregiver interviews), WG protocols, and an online survey with WG participants.
Results
Multiprofessional WGs were established on all hospital wards, with an average of 7 meetings per ward within 1 year and 4 participants per meeting. Adapting the process to participants’ wishes and needs were crucial, particularly regarding the desired degree of external input. We identified 4 barriers (e.g. declining participation, institutional limits) and 7 facilitators (e.g. involvement of staff in leading positions, multiprofessional composition). The WGs tailored 34 measures, e.g. team meetings to improve communication within the team. Participants’ views were generally positive: 91% felt able to share their thoughts, 66% were satisfied with the outcome, and 77% would participate again.
Significance of results
The employee-driven approach was feasible and useful for tailoring ward-specific measures. However, integrating top-down elements proved to be beneficial. The identified barriers and facilitators provide insights for transferring an employee-driven approach to other hospitals to improve care in the dying phase outside specialized palliative care settings.
Clinical trial registration
The study was registered in the German Clinical Trials Register (DRKS00025405).
This study explored bereaved relatives’ experiences of end-of-life care (EoL care) in the last 3 days in an acute private hospital in Australia.
Methods
An interpretative qualitative study was conducted. Semi-structured interviews with 8 bereaved relatives whose family member had died at an acute private hospital shared their experiences of the EoL care during the last 3 days of life. The transcribed interviews were analyzed using inductive thematic analysis.
Results
Bereaved family members had mixed experiences, and their primary concerns related to the need for improvements in support for the family; communication; and clinicians partnering with families. The need for family support encompassed care for the person dying and the bereaved relatives, before and during the last days of life, and after death. Bereaved relatives perceived that hospital based EoL care could be positive when the care was collaborative with health professionals, patients, and relatives and there was effective communication.
Significance of results
A patient- and family-centered approach to EoL care should be provided in hospitals, and it requires understanding of the needs of both patients and family members, including informational requirements, communication approaches, and care delivery. Health-care organizations have a responsibility to care for families and this must be considered as part of organizational readiness and ongoing assessment to determine if the standards for EoL care are met. The findings serve as a guide for evidence-informed practice and may contribute to the development of resources and guidelines for delivery of quality EoL care.
Patient dignity is a key concern during end-of-life care. Dignity Therapy is a person-centered intervention that has been found to support patient dignity interviews focused on narrating patients’ life stories and legacies. However, mechanisms that may affect utility of the Dignity Therapy have been little studied. In this study, we evaluate whether the extent to which patients are more communal in their interviews acts as a mechanism for increased patient dignity.
Methods
We analyzed the written transcripts from Dignity Therapy interviews with 203 patients with cancer over the age of 55 receiving outpatient palliative care (M = 65.80 years; SD = 7.45 years, Range = 55–88 years; 66% women). Interviews followed core questions asking patients about their life story and legacy. We used content-coding to evaluate the level of communion narrated in each interview, and mediation analyses to determine whether communion affected dignity impact.
Results
Mediation analyses indicated that the extent to which patients narrated communion in their interview had a significant direct effect on post-test Dignity Impact. Communion partially mediated the effect of pre-test on post-test Dignity Impact. For both the life story and legacy segments of the session, narrating communion had a direct effect on post-test Dignity Impact.
Significance of results
Narrating communion serves as a mechanism for enhancing patient dignity during Dignity Therapy. Providers may consider explicitly guiding patients to engage in, elaborate on, communal narration to enhance therapeutic utility. In addition, encouraging patients with advanced illness to positively reflect on relationships in life may improve patient dignity outcomes in palliative and end-of-life care.
In 2022, assisted suicide (AS) was legalized in Austria. We aimed to investigate the experiences and attitudes of palliative care (PC) and hospice nurses toward AS in Austria after the first year of implementation of the new law.
Methods
A cross-sectional survey was distributed online to nurses in every known specialized and general hospice and PC units in Austria (n = 255 units). The questionnaire included sociodemographic characteristics, the Assisted Suicide Attitude Scale, the Comfort Discussing Assisted Suicide Scale, and questions on recent experiences with AS requests. We used Spearman’s correlation coefficient for determining associations between sociodemographic characteristics and attitudes toward AS, as well as comfort discussing AS. For comparison of frequencies, we applied ꭓ2 tests. We computed a linear regression model to examine predictors for attitudes toward AS.
Results
The total sample were N = 280 nurses. More than half (61.2%) indicated that they had cared for a patient who expressed a wish for AS within the first year of implementation. Though responses varied widely, more nurses expressed support for AS than those were opposed (50.36% and 31.75%, respectively). Factors that statistically contributed to more reluctance toward AS in the regression model were older age, religiousness, and experience of working with patients expressing a wish for AS.
Significance of results
This work provides valuable insight into nurses’ perceptions toward the legislation of AS in the first year since the new law was passed. The results can inform the future development of the AS system and support for nurses in end-of-life care, and critically contribute to international discussions on this controversial topic.
Although caring for dying patients and their family caregivers (FC) is integral to patient care, training in communication about approaching death is almost inexistent in medical and nursing curricula. Consequently, many health professionals have insufficient knowledge about conducting these conversations. In order to gain a broader insight into essential aspects of this communication from different perspectives, we conducted focus groups with key stakeholders.
Methods
Medical specialists, nurses, medical students, bereaved FC and patient representatives participated in five focus groups (n = 30). Following a focus group schedule, we elicited relevant aspects of communication about approaching death, associated emotions, and appropriate communication frameworks. We analyzed data thematically.
Results
Four main themes were central to conversations about approaching death: (1) embracing care within medical expertise, (2) preparing the conversation while remaining open to the unexpected, (3) recognizing and reflecting on own emotions and reactions, and (4) establishing a meaningful connection with others.
Significance of results
Communicating about approaching death with dying patients and their FC can be complex and challenging at a professional and personal level. With the recognition of the dying phase, a process is initiated for which health professionals need solid clinical knowledge about but also effective communication skills, constant self-reflection and self-care strategies. Comprehensive training and supervision while dealing with the challenges of communicating approaching death to dying patients and their FC are key, particularly for trainees, less experienced physicians and nurses. The essential components identified in this study can help health professionals to master these conversations.
Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams.
Methods
Ambispective study with the participation of 14 PPCT working in Spain.
Results
From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years’ experience (66.7% vs. 45.5%, p = 0.018).
Significance of results
PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.
Death anxiety (DA), a condition characterized by fear, angst, or panic related to the awareness of one’s own death, is commonly observed in advanced cancer patients. The aim of this study was to examine the psychometric properties of the Italian version of the Death and Dying Distress Scale (DADDS-IT) in a sample of patients with advanced cancer.
Methods
The sample included 200 Italian advanced cancer patients meeting eligibility criteria to access palliative care. Patients’ levels of DA were assessed by using the DADDS-IT, while the levels of depression, anxiety, demoralization, spiritual well-being, and symptom burden were assessed using the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7, the Demoralization Scale, the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale, and the Edmonton Symptom Assessment System, respectively; Karnofsky Performance Status was used to measure functional impairment. Confirmatory factor analyses (CFA) of previous structures and exploratory factor analyses (EFA) were conducted.
Results
CFA revealed that none of the previous structures adequately fitted data from our sample. EFA revealed a 4-factor model comprising Finitude (α = 0.91), Regret (α = 0.86), Dying (α = 0.88), and Relational Burden (α = 0.73), accounting for the 77.1% of the variance. Dying subscore was higher in hospice patients than in those recruited in medical wards.
Significance of results
The present study provides further evidence that DA is a condition that deserves attention and that DADDS-IT shows good psychometric properties to support its use in research and clinical settings.
To determine sociodemographics and caregiver burdens associated with overnight hospitalization, hospice utilization, and hospitalization frequency among persons with dementia (PWD).
Methods
Cross-sectional analysis of PWD (n = 899) of the National Health and Aging Trends Study linked to the National Study of Caregiving. Logistic and proportional odds regression determined the effects of caregiver burdens on overnight hospitalization, hospice use, and hospitalization frequency. Differences between PWD alive not-alive groups were compared on overnight hospitalization and frequency.
Results
Alive PWD (n = 804) were 2.36 times more likely to have an overnight hospital stay (p = 0.004) and 1.96 times more likely to have multiple hospitalizations when caregivers found it physically difficult to provide care (p = 0.011). Decedents aged 65–74 (n = 95) were 4.55 times more likely to experience overnight hospitalizations than 85+, hospitalizations were more frequent (odds ratio [OR] = 4.84), and there was a significant difference between PWD alive/not alive groups (p = 0.035). Decedents were 5.60 times more likely to experience an overnight hospitalization when their caregivers had financial difficulty, hospitalizations were more frequent when caregivers had too much to handle (OR = 8.44) and/or no time for themselves (OR = 10.67). When caregivers had no time for themselves, a significant difference between alive/not alive groups (p = 0.018) was detected in hospitalization frequency. PWD whose caregivers had emotional difficulty helping were 5.89 times more likely to utilize hospice than caregivers who did not report emotional difficulty.
Significance of results
Care transitions among PWD at the end of life are impacted by the circumstances and experiences of their caregivers. Subjective caregiver burdens represent potentially modifiable risks for undesired care transitions and opportunities for promoting hospice use. Future work is warranted to identify and address these issues as they occur.
The aim of this article is to review and synthesize the evidence on end-of-life in burn intensive care units.
Methods
Systematic scoping review: Preferred Reporting Items for Systemic Reviews extension for Scoping Reviews was used as a reporting guideline. Searches were performed in 3 databases, with no time restriction and up to September 2021.
Results
A total of 16,287 documents were identified; 18 were selected for analysis and synthesis. Three key themes emerged: (i) characteristics of the end-of-life in burn intensive care units, including end-of-life decisions, decision-making processes, causes, and trajectories of death; (ii) symptom control at the end-of-life in burn intensive care units focusing on patients’ comfort; and (iii) concepts, models, and designs of the care provided to burned patients at the end-of-life, mainly care approaches, provision of care, and palliative care.
Significance of results
End-of-life care is a major step in the care provided to critically ill burned patients. Dying and death in burn intensive care units are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Different dying trajectories were described, suggesting the possibility to develop further studies to identify triggers for palliative care referral. Symptom control was not described in detail. Palliative care was rarely involved in end-of-life care for these patients. This review highlights the need for early and high-quality palliative and end-of-life care in the trajectories of critically ill burned patients, leading to an improved perception of end-of-life in burn intensive care units. Further research is needed to study the best way to provide optimal end-of-life care and foster integrated palliative care in burn intensive care units.
End-of-life dreams and visions (ELDVs) have been reported throughout history. We aimed to synthesize the research literature on ELDVs to determine the proportions of patients, bereaved families, healthcare professionals, and volunteers reporting ELDVs; ELDV content, timing, and interpretation; and any evidence-based approaches to ELDV-related care.
Methods
A systematic review protocol was registered with PROSPERO (CRD4021282929). CINAHL, Medline, Embase, Emcare, and APA PsycInfo were searched for peer-reviewed English language articles reporting qualitative, quantitative, or mixed methods studies that explored reports of ELDVs by patients, bereaved families, healthcare professionals, or volunteers. Synthesis used both meta-analysis and a narrative approach.
Results
Of 2,045 papers identified by searches, 22 were included, describing 18 studies in a variety of settings. Meta-analyses indicated that 77% (95% confidence intervals [CIs] 69–84%) of patients (n = 119) reported an ELDV compared with 32% (95% CIs 21–44%) of bereaved relatives (n = 2,444) and that 80% (95% CIs 59–94%) of healthcare professionals (n = 171) reported either witnessing or being told of an ELDV in the preceding 5 years. Studies of volunteers reported 34% (95% CIs 20–48%) (n = 45) either witnessing or being told of an ELDV over their entire period of service, with 49% of volunteers (95% CIs 33–64%) (n = 39) reporting events occurring in the preceding year. ELDVs reported by patients, bereaved families, healthcare professionals, and volunteers were perceived as being a source of comfort. Healthcare professionals and volunteers expressed a need for further education on how to support patients experiencing ELDVs and their families.
Significance of results
ELDVs are experienced by the majority of dying patients and need consideration in delivering holistic end-of-life care. Little if any research has been conducted in acute care facilities.
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.
Method
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.
Results
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.
Significance of results
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.
Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis.
Method
We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes.
Results
From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: “Significant people and things”; “Remarkable moments”; “Acknowledgments”; “Reflection on the course of life”; “Personal values”; “Messages left to others”; and “Requests and last wishes”.
Significance of results
Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting.
Preserving personal dignity is an important aim of palliative care. Little is known about how physicians perceive and preserve dignity of patients from non-western migration backgrounds. Insight in this is important given the increased demand for culturally sensitive palliative care.
Aim
To gain insight in how Dutch physicians perceive and preserve dignity in the last phase of life for patients from non-western migration backgrounds.
Design
Qualitative thematic analysis of semi-structured interviews.
Participants
Fifteen physicians experienced in palliative care.
Results
Physicians experienced dilemmas in preserving dignity of non-western patients in three situations: (a) relief of suffering in the terminal phase, (b) termination of interventions and treatment, and (c) disclosure of diagnosis. Physicians wanted to grant the needs of patients in the last phase of their lives, which was central to physicians’ view on dignity, but dilemmas arose when this conflicted with physicians’ other personal and professional values. To make the dilemmas manageable, physicians assessed whether needs of patients were authentic, but due to linguistic, cultural, and communication barriers, this was difficult with non-western patients. To find a way out of the dilemmas, physicians had three strategies: accept and go along with patient's wishes, convince or overrule the patient or family, or seek solutions that were acceptable for all.
Conclusions
Physicians encounter dilemmas providing palliative care for people from non-western backgrounds. Future physicians can be trained in connective strategies and seeking middle grounds to optimally preserve patients’ dignity while being in concordance with their personal and professional values.
Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions.
Context
The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death.
Methods
Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life.
Results
Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase.
Significance of results
Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.