Interstitial lung diseases (ILD) represent a heterogenous group of illnesses with significant multidimensional suffering and varied prognoses. Integration of palliative care (PC), though beneficial, is limited for this group of individuals. The complex care needs of people with ILD and their caregivers are underrecognized and incompletely addressed. This gap necessitates shared care by a multidisciplinary team along the illness trajectory. PC clinicians need to understand the illness patterns, prognoses, therapeutic options including lung transplant, symptom management, and other supportive interventions in ILD care. This article distills the current evidence into 10 practical tips to assist PC clinicians in delivering comprehensive care to people with ILD. These tips have been compiled by a multidisciplinary and interprofessional group consisting of pulmonologists, intensivists, academic clinicians, policy makers, physicians, nurses, and psychologists from specialist PC teams. Well-informed PC teams can significantly influence the illness experience of individuals with ILD and their caregivers, thereby reducing serious health-related suffering.
Capacity-based frameworks of personhood risk marginalizing individuals whose agency, cognition, or consciousness are diminished by illness, brain injury, or proximity to death. This article introduces the concept of liminal personhood, which describes the persistence of moral and relational identity even as conventional markers of personhood fade. Drawing on ethical, philosophical, and neuroethical scholarship, the paper argues that failing to recognize enduring personhood can fracture patient identity and erode clinician and caregiver moral integrity. Recognition of liminal personhood has clear clinical utility: It guides dignity-conserving care, supports relational engagement, and sustains clinicians' ethical coherence amid profound vulnerability, thus offering a practical framework for humane care at the edges of consciousness and decisional capacity.
Serious illness threatens both the body and the self: the coherent, continuous sense of who one is, from bodily integrity to psychosocial identity. When illness disrupts identity and patients confront mortality and dependence, a range of responses may follow, including behaviors such as relentless demands, devaluation of clinicians, insistence on additional treatment, or rage at perceived care failures. These presentations are often labeled "narcissistic," yet such a formulation can foreclose clinical understanding. Heinz Kohut's self psychology offers a more generative framework: one that understands these behaviors as attempts to preserve self-cohesion when illness threatens identity, autonomy, competence, and roles. Because needs for recognition, connection, and reliable support persist throughout life, serious illness often exposes vulnerabilities that were previously stabilized through work, relationships, and social roles. Informed by self psychology's core concepts-self-object needs, mirroring, idealizing, twinship, and empathic attunement-this paper presents practical serious illness communication tools designed to reduce interpersonal conflict, strengthen therapeutic alliance, and support patients in maintaining a coherent sense of self as illness progressively reshapes what is possible.
BACKGROUND:The palliative care needs of patients with noncancer diseases are increasingly recognized, yet the prevalence, models, and delivery of outpatient specialist palliative care for these populations remain understudied. OBJECTIVE:To describe outpatient palliative care clinics for noncancer diseases across Canada, including clinic prevalence and models of care. METHODS:Cross-sectional survey study of practicing Canadian palliative care physicians recruited nationally. Quantitative data were analyzed descriptively, and qualitative data were analyzed using thematic analysis. RESULTS:Eighty-eight physicians responded (response rate = 13.2%). Fifty-six physicians from seven provinces completed the survey, representing 49 noncancer palliative care clinics. Most clinics (71%) were disease-agnostic or focused on neurological or transplant populations. Majority were stand-alone clinics (55.5%, 95% confidence interval [CI] = 37%-72%), with the remainder embedded in disease-specific clinics (37%, 95% CI = 28%-63%). Joint specialist-palliative visits were uncommon (32%; 95% CI = 18%-51%). Few initial visits were virtual (2%; interquartile range [IQR] = 0%-5% for telephone and 0%-6% for video), and rural patients constituted a minority of caseloads (median = 20%; IQR = 10%-50%). Referral criteria varied, with some incorporating prognosis and functional scores. Barriers included logistical constraints, staffing, and variable disease specialists and institutional supports. Communication and collaboration were identified as key strategies to overcome barriers. CONCLUSIONS:While outpatient palliative care clinics for noncancer diseases in Canada appear to be growing, survey respondents identified ongoing challenges including variable referral practices, limited resources, and gaps in rural access. These preliminary findings should be interpreted with caution given the response rate and missing data. Nevertheless, they underscore the need to address barriers to equitable and timely palliative care access in these populations.
BACKGROUND:Palliative surgery plays a critical role in alleviating symptom burden and thus improving quality of life in patients with advanced disease. CASE PRESENTATION:This is a case of a 23-year-old female in rural Uganda with an untreated, massive right breast mass present since infancy and progressive abdominal distention of unclear etiology. Over time, the breast mass impaired her mobility, rendering her largely homebound and dependent on others for basic movement. Despite evidence of profound malnutrition, the patient expressed a clear goal: to regain the ability to walk in the time she had left. After multidisciplinary discussions and goals-of-care conversations, she was able to undergo medical optimization. She underwent a right total mastectomy under limited anesthesia. A 9.6 kg mass was successfully removed without complication. Postoperatively, she regained independent ambulation and reported significant improvement in quality of life. DISCUSSION:This case highlights the value of palliative surgery in restoring function and dignity in the context of limited life expectancy. Patient-centered decision-making prioritizing patient values, clear communication, and interdisciplinary collaboration are all important considerations in decision-making. In low-resource settings, where access to early diagnosis and treatment is often limited, palliative surgical interventions can offer meaningful improvements in autonomy and well-being. CONCLUSION:Palliative surgery, when aligned with patient goals, can provide substantial functional and psychosocial benefits.
BACKGROUND:Pancreatic Ductal Adenocarcinoma (PDAC) is associated with substantial morbidity and poor quality of life (QOL). Early palliative care (EPC) has been shown to improve QoL and reduce symptom burden in PDAC, but only a minority of PDAC patients receive it. Using three conceptual models, we developed a community health worker (CHW)-led intervention to help facilitate stepped PC. OBJECTIVES:To evaluate the feasibility, acceptability, and preliminary effectiveness of PAL-CHW-PDAC. DESIGN:A single-center prospective single-arm pilot study. SETTING/SUBJECTS:Newly-diagnosed PDAC patients (n = 48). MEASUREMENTS:Acceptability and Feasibility were defined using the RE-AIM framework. Secondary outcomes were symptom burden, QOL, attitudes toward PC, and advance care planning (ACP) completion. RESULTS:Ninety-four percent of patients strongly agreed that the intervention was acceptable. Themed common responses highlighted by patients centered around the critically important role of the CHW in their care, especially as symptoms worsened. Patients' physical QoL and symptom burden improved from baseline to 12 weeks, while 83% of patients completed their ACP. CONCLUSIONS:The PAL-CHW-PDAC intervention was feasible and acceptable to PDAC patients and improved symptom burden. Prospective clinical trials are needed to assess the intervention's ability to address the QOL needs of PDAC patients.
Patients with relational trauma, including histories of maltreatment, abandonment, exploitation, or profound misattunement in caregiving relationships, may face unique psychological and interpersonal stressors when diagnosed with a serious illness. Because serious illness requires dependence on others, patients' past traumatic experiences with caregivers may be reactivated in medical relationships, manifesting in behaviors that can be confusing, contradictory, inconsistent, or difficult to understand. These dynamics may evoke intense countertransference responses in clinicians, at times making it difficult to offer therapeutically attuned care. By understanding relational trauma through the lens of psychodynamic and neuropsychological principles, palliative care clinicians can develop more empathic and clinically useful approaches to managing complex interpersonal dynamics. This article illustrates how these principles can be adapted to inform serious illness communication strategies for patients with relational trauma, including calibrating the treatment frame, validating emotions while maintaining boundaries, enhancing empathy to promote the therapeutic relationship, and repairing ruptures in the treatment relationship.
BACKGROUND:The Affordable Care Act established concurrent hospice care for children, yet access and timely referral remain limited. Pediatric oncology prognostic trajectories are variable, complicating hospice timing. OBJECTIVE:To quantify survival after hospice enrollment among pediatric patients with cancer and identify characteristics associated with death ≤6 versus >6 months. METHODS:Three-year retrospective decedent cohort study at a single site, including all children with cancer (0-21 years) who died while enrolled in concurrent hospice care between October 1, 2022, and October 1, 2025. Electronic health record variables were structured by Andersen's Behavioral Model (predisposing, enabling, and need factors). Univariate tests preceded multivariable Cox proportional hazards modeling. Kaplan-Meier six-month overall survival (OS) was estimated. RESULTS:Among 213 decedents (mean age 12.2 years), median hospice length of stay was 112 days (mean 163; range 7-801). Six-month OS after hospice enrollment was 36.6%. In adjusted analyses, an out-of-hospital do not resuscitate (hazard ratio [HR] 2.69, 95% confidence interval [CI]: 1.96-3.70), financial stressors (HR 1.40, 95% CI: 1.05-1.85), and referral by an oncologist trained before institutional palliative care establishment (HR 4.19, 95% CI 3.00-5.86) were associated with death within six months. Greater exposure to chemotherapy was associated with a modestly lower hazard (HR 0.98 per dose, 95% CI: 0.97-0.99). Several biomedical factors, including diagnoses and relapse status, were not associated with time to death after adjustment. CONCLUSIONS:The findings underscore prognostic uncertainty and the influence of enabling factors on hospice enrollment timing. The study suggests reconsideration of six-month prognostic eligibility for pediatric concurrent hospice. Health service and policy-relevant studies are warranted.
Patients with serious illness coupled with a history of difficulty coping with challenging situations often exhibit behaviors consistent with emotion dysregulation and low distress tolerance. Dialectical behavior therapy (DBT), an evidence-based psychological treatment originally developed for patients with borderline personality disorder and now widely applied across clinical settings, offers skills-based tools to support patients navigating the intense and understandable distress that arises with illness. This article explores the care of a patient with advanced cancer who presents with significant emotion dysregulation and low distress tolerance, which negatively affects their interactions with the medical team and generates secondary distress among clinicians. Drawing on foundational DBT principles, including distress tolerance skills, emotional validation, dialectical thinking, and clinician self-regulation, we demonstrate how DBT-informed communication strategies can help patients manage distress more effectively. We also explore how clinicians can use these skills to manage their own distress while interacting with patients experiencing high distress.
BACKGROUND:Understanding the factors associated with the place of death is important for planning individual care and health care services. OBJECTIVES:To determine the place of death of community-living Canadians in a cohort study; and to investigate the factors associated with the location of death. DESIGN:The Canadian Longitudinal Study on Aging (CLSA) is a prospective cohort study of aging which commenced in 2010, with a sample of 51,338 community-living participants aged 45-85. There were 1287 participants with completed proxy decedent questionnaires. SETTING:The original sampling frame was from representative sampling frames across Canada. MEASUREMENTS:Community was defined as the participant's home or other non-health-care settings. Other locations were: hospice/palliative care, hospital, and nursing home/residential (long-term care [LTC]) setting. Age, sex, and income were from the CLSA survey. Cause of death, functional status prior to death, and the functional trajectory to death were from the proxy report of the decedent questionnaire. RESULTS:In total, 25% died in the community, 49% died in a hospital, 17% died in hospice/palliative care, and 9% died in LTC. Older age was associated with death in LTC. In multinomial regression models, the cause of death and the trajectory of death were associated with the place of death. CONCLUSIONS:Hospitals are the most common place of death in Canada, and different diseases and disease trajectories are associated with the place of death. These heterogeneous factors may complicate attempts to increase the proportion of people who die at home.
Stimulant use disorder (StUD) is common in the hospice and palliative care (PC) setting, though guidance for clinicians remains limited. Stigma around stimulant use is widespread and can lead to impaired clinician/patient communication, poor symptom control, and lower quality of care. PC clinicians should be able to diagnose StUD, understand the potential pharmacologic and nonpharmacologic management options, engage with patients in a trauma-informed way, and refer to addiction medicine colleagues when appropriate. When utilizing opioids for pain management, PC clinicians should be aware of the impact of stimulant use on opioid risk and toxicity. In this article, a multidisciplinary group of PC, hospice, addiction medicine, psychiatry, ethics, and pharmacy clinicians presents ten practical tips for caring for seriously ill patients with current or prior StUD.
Objective: To investigate the use, feasibility and tolerability of bolus subcutaneous injection of pantoprazole in the specialist palliative care hospice inpatient setting. Method: A retrospective review of the electronic records and paper administration charts of the first 10 patients who received a slow bolus subcutaneous injection of pantoprazole in a hospice inpatient unit. Results: The most common indications for a proton pump inhibitor were gastro-esophageal reflux disease and gastroprotection. Loss of swallow in the last days of life was the most common reason for the subcutaneous route. 80% of patients tolerated bolus subcutaneous pantoprazole and may have received clinical benefit. Two patients developed skin irritation at the subcutaneous injection site. Conclusion: Bolus subcutaneous pantoprazole is a potential alternative treatment when a proton pump inhibitor is indicated, and the oral route is not available or effective. There is a risk of skin irritation requiring careful monitoring. Controlled research is needed.
INTRODUCTION:An Advance Care Directive (ACD) allows a person to document their future health care wishes, guiding health care professionals in times when the person is unable to speak for themselves. In the United States, the Patient Self-Determination Act was passed into federal law in 1990, marking the beginning of the advance care planning movement in the United States. Despite ongoing efforts, ACD completion rates are poor, particularly among those coming into general practice. This narrative review sought to identify and synthesize community-based interventions designed to improve ACD completion rates to inform local approaches. METHODS:A narrative review using a systematic approach was conducted. Two databases-Ovid Medline and CINAHL-were searched for original research published in English between 2000 and January 2025. Titles/abstracts and full texts were independently reviewed by two authors for eligibility. Conflicts were resolved by a third author. Data were extracted from included articles and synthesized narratively to describe the interventions and their impact on ACD completion rates. RESULTS:Database searches yielded 1200 articles, of which 40 studies were included. While studies were predominately from the United States, research was conducted in settings of varying size and employed diverse randomized, nonrandomized and quality improvement study designs. The interventions trialled targeted patients and/or primary care providers and commonly comprised a suite of complementary strategies that spanned education/training, resources/decision aids, system improvements/quality improvement activities, support/consults/visits, and reminders/prompts. The outcomes were predominately positive, with most studies showing improvements in ACD completion rates following the intervention. CONCLUSION:There is increasing research interest and evidence for interventions supporting ACD completion rates among patients in primary care settings. Health care administrators and clinicians should consider and test which interventions or intervention components are most likely to drive higher completion rates in their local contexts. Further research is now needed to evaluate the extent to which interventions can enhance ACD completion rates in diverse countries and settings.
BACKGROUND:The Clinical Frailty Scale (CFS) is widely used, but the "terminally ill" category 9-defined by a <6-month prognosis-may limit nuanced survival estimation in geriatric oncology. OBJECTIVE:To evaluate the prognostic utility of the CFS when category 9 is omitted. METHODS:This retrospective study analyzed 901 older adults (≥65 years) with incurable cancer at a palliative clinic. Patients were stratified into CFS 2-5 (n = 618) and CFS 6-8 (n = 283). Survival was assessed using multivariate Cox regression. RESULTS:Median survival was significantly shorter for CFS 6-8 compared to CFS 2-5 (90 vs. 158 days; p < 0.001). For 3-month mortality, CFS 6-8 demonstrated a hazard ratio (HR) of 2.25 compared to CFS 2-5. After adjusting for age, symptoms, albumin, and comorbidities, the CFS remained an independent predictor of 3-month (HR 2.07) and 6-month mortality (HR 1.57). CONCLUSION:Omitting category 9 allows the CFS to provide meaningful prognostic data, facilitating better end-of-life planning in geriatric oncology.
BACKGROUND:Despite growing recognition of palliative care as a global health priority, postgraduate academic programs in palliative care remain highly heterogeneous and lack operational frameworks for quality evaluation. OBJECTIVE:To develop a consensus-based set of quality indicators for the evaluation of postgraduate academic programs in palliative care, based on expert consensus within the Spanish context. METHODS:A modified Delphi study was conducted with a panel of 19 experts in palliative care and education. Over three rounds, participants assessed proposed indicators according to essentiality, clarity, and measurability. Consensus was defined as a mean score ≥3 and ≥75% agreement. RESULTS:The process resulted in 21 indicators grouped into six domains. Agreement increased across rounds, and all final indicators achieved mean scores above 3.0 across the three dimensions assessed. All final indicators were considered both essential and measurable. CONCLUSIONS:A consensus-based set of 21 quality indicators for postgraduate academic programs in palliative care was developed, providing a structured framework for evaluation. The findings highlight a key challenge in balancing essential educational domains with their measurability. These indicators may support more consistent assessment and comparability across programs, although further validation, implementation testing, and international adaptation are needed.
BACKGROUND:Day hospices are a new type of specialized outpatient palliative care facility. Recommendations regarding the exact structure of day hospices are heterogeneous. OBJECTIVES:This study aimed to evaluate the content and social and therapeutic services offered by day hospices from the perspective of patients and their relatives. DESIGN AND SETTING:This cohort study was conducted as part of the IMPULS study, a quality-assured investigation of day hospices guided by the Medical Research Council Framework for the Development and Evaluation of Complex Interventions. PARTICIPANTS:The study included patients (guests of a single day hospice versus non-guests) and their relatives to evaluate a day hospice in Germany. PROCEDURES:The TGHS11 and TGHS14 questionnaires were used at three time points in time. RESULTS:Patients (n = 58) and their relatives (n = 14) rated the content and services offered by a single day hospice as positive, particularly the nursing staff, physiotherapy, walks, and foot care (each rated 4-5 out of 5). Conversations with other guests and nursing staff and shared meals were the most important social activities (each rated 3.5-5 out of 5). Social contact/support, nursing, and health care were the main reasons for visiting the day hospice. Additionally, relatives cited their relief as a reason. CONCLUSIONS:From the perspective of day hospice guests and their relatives, social contact with nursing staff and other guests, nursing care, and mobility-promoting treatments are important core elements of day hospices. Other services and content are tailored to individual preferences and appear as optional extras.
