Browsing by Subject "Palliative care"
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Item Abbreviated dignity therapy for adults with advanced-stage cancer and their family caregivers: Qualitative analysis of a pilot study(Cambridge University Press, 2019-06) Beck, Adrienne; Cottingham, Ann H.; Stutz, Patrick V.; Gruber, Rachel; Bernat, Jennifer K.; Helft, Paul R.; Wilhelm, Laura; Schmidt, Karen; Stout, Madison E.; Willard, Claire; Johns, Shelley A.; Medicine, School of MedicineObjective Dignity therapy (DT) is designed to address psychological and existential challenges that terminally ill individuals face. DT guides patients in developing a written legacy project in which they record and share important memories and messages with those they will leave behind. DT has been demonstrated to ease existential concerns for adults with advanced-stage cancer; however, lack of institutional resources limits wide implementation of DT in clinical practice. This study explores qualitative outcomes of an abbreviated, less resource-intensive version of DT among participants with advanced-stage cancer and their legacy project recipients. Method Qualitative methods were used to analyze postintervention interviews with 11 participants and their legacy recipients as well as the created legacy projects. Direct content analysis was used to assess feedback from the interviews about benefits, barriers, and recommendations regarding abbreviated DT. The legacy projects were coded for expression of core values. Result Findings suggest that abbreviated DT effectively promotes (1) self-expression, (2) connection with loved ones, (3) sense of purpose, and (4) continuity of self. Participants observed that leading the development of their legacy projects promoted independent reflection, autonomy, and opportunities for family interaction when reviewing and discussing the projects. Consistent with traditional DT, participants expressed “family” as the most common core value in their legacy projects. Expression of “autonomy” was also a notable finding. Significance of results Abbreviated DT reduces resource barriers to conducting traditional DT while promoting similar benefits for participants and recipients, making it a promising adaptation warranting further research. The importance that patients place on family and autonomy should be honored as much as possible by those caring for adults with advanced-stage cancer.Item Cervical Cancer: 90-70-90 and Palliative Care(American Society of Clinical Oncology, 2021) Cleary, James F.; Medicine, School of MedicineItem Circumstances Surrounding End-of-Life in Pediatric Patients Pre- and Post-Heart Transplant: A Report from the Pediatric Heart Transplant Society(Wiley, 2022) Cousino, Melissa K.; Yu, Sunkyung; Blume, Elizabeth D.; Henderson, Heather T.; Hollander, Seth A.; Khan, Sairah; Parent, John Jerry; Schumacher, Kurt R.; Pediatrics, School of MedicineBackground: Although mortality has decreased considerably in pediatric heart transplantation, waitlist and post-transplant death rates remain notable. End-of-life focused research in this population, however, is very limited. This Pediatric Heart Transplant Society study aimed to describe the circumstances surrounding death of pediatric heart transplant patients. Methods: A retrospective analysis of the multi-institutional, international, Pediatric Heart Transplant Society registry was conducted. Descriptive statistics and univariate analyses were performed to 1) describe end-of-life in pediatric pre- and post-heart transplant patients and 2) examine associations between location of death and technological interventions at end-of-life with demographic and disease factors. Results: Of 9217 patients (0-18 years) enrolled in the registry between 1993 and 2018, 2804 (30%) deaths occurred; 1310 while awaiting heart transplant and 1494 post-heart transplant. The majority of waitlist deaths (89%) occurred in the hospital, primarily in ICU (74%) with most receiving mechanical ventilation (77%). Fewer post-transplant deaths occurred in the hospital (22%). Out-of-hospital death was associated with older patient age (p < .01). Conclusions: ICU deaths with high use of technological interventions at end-of-life were common, particularly in patients awaiting heart transplant. In this high mortality population, findings raise challenging considerations for clinicians, families, and policy makers on how to balance quality of life amidst high risk for hospital-based death.Item Developing Palliative Medicine as an Accredited Medical Specialty in Kenya(American Society of Clinical Oncology, 2022) Elias, Hussein; Dow, Lindsay A.; Boit, Juli; Asirwa, Chite F.; Cornetta, Kenneth; Medical and Molecular Genetics, School of MedicinePurpose: Most people living with life-limiting illnesses in Kenya lack access to palliative care. Globally, palliative medicine is a growing specialty that equips clinicians with the training required to improve the quality of life for people living with a wide variety of serious illnesses. Optimal delivery relies on a skilled workforce with specialty-level training, and we identified the absence of board-accredited training programs for clinical officers (COs) and physicians as a barrier to providing high-quality palliative care in Kenya. Methods: We held a series of stakeholder meetings with expert palliative care clinicians, leaders, and educators from Kenya and other countries to develop and implement a comprehensive, evidence-based palliative medicine curriculum for COs. Results: We developed a higher diploma program that is being administered by the Moi Teaching and Referral Hospital College in Eldoret, Kenya, with faculty from Moi University School of Medicine and affiliated institutions. We have collaborated to create the first diploma awarding program in palliative medicine in Kenya. Our efforts have led the Kenyan CO Council adding palliative medicine to their list of recognized and licensed specialties. COs are now enrolled in an 18-month program that will lead to a higher diploma and national recognition as palliative care specialists. Conclusion: Early building of consensus and educating policymakers, regulatory bodies, and government personnel was an important step to overcome the challenge of palliative care misconceptions. The unique capacity of global partnerships and early and frequent stakeholder involvement is critical in novel program development. Local ownership of such in-country programs is key, and the stakeholders should be included in strategies for sustainability.Item Do Life-sustaining Treatment Orders Match Patient and Surrogate Preferences? The Role of POLST(Springer, 2021) Hickman, Susan E.; Torke, Alexia M.; Sachs, Greg A.; Sudore, Rebecca L.; Tang, Qing; Bakoyannis, Giorgos; Heim Smith, Nicholette; Myers, Anne L.; Hammes, Bernard J.; School of NursingBackground: It is essential to high-quality medical care that life-sustaining treatment orders match the current, values-based preferences of patients or their surrogate decision-makers. It is unknown whether concordance between orders and current preferences is higher when a POLST form is used compared to standard documentation practices. Objective: To assess concordance between existing orders and current preferences for nursing facility residents with and without POLST forms. Design: Chart review and interviews. Setting: Forty Indiana nursing facilities (29 where POLST is used and 11 where POLST is not in use). Participants: One hundred sixty-one residents able to provide consent and 197 surrogate decision-makers of incapacitated residents with and without POLST forms. Main measurements: Concordance was measured by comparing life-sustaining treatment orders in the medical record (e.g., orders about resuscitation, intubation, and hospitalization) with current preferences. Concordance was analyzed using population-averaged binary logistic regression. Inverse probability weighting techniques were used to account for non-response. We hypothesized that concordance would be higher in residents with POLST (n = 275) in comparison to residents without POLST (n = 83). Key results: Concordance was higher for residents with POLST than without POLST (59.3% versus 34.9%). In a model adjusted for resident, surrogate, and facility characteristics, the odds were 3.05 times higher that residents with POLST had orders for life-sustaining treatment match current preferences in comparison to residents without POLST (OR 3.05 95% CI 1.67-5.58, p < 0.001). No other variables were significantly associated with concordance. Conclusions: Nursing facility residents with POLST are significantly more likely than residents without POLST to have concordance between orders in their medical records and current preferences for life-sustaining treatments, increasing the likelihood that their treatment preferences will be known and honored. However, findings indicate further systems change and clinical training are needed to improve POLST concordance.Item Factors associated with concordance between POLST orders and current treatment preferences(Wiley, 2021) Hickman, Susan E.; Torke, Alexia M.; Sachs, Greg A.; Sudore, Rebecca L.; Tang, Qing; Bakoyannis, Giorgos; Heim Smith, Nicholette; Myers, Anne L.; Hammes, Bernard J.; School of NursingBackground: POLST is widely used to document the treatment preferences of nursing facility residents as orders, but it is unknown how well previously completed POLST orders reflect current preferences (concordance) and what factors are associated with concordance. Objectives: To describe POLST preference concordance and identify factors associated with concordance. Design: Chart reviews to document existing POLST orders and interviews to elicit current treatment preferences. Setting: POLST-using nursing facilities (n = 29) in Indiana. Participants: Nursing facility residents (n = 123) and surrogates of residents without decisional capacity (n = 152). Measurements: Concordance was determined by comparing existing POLST orders for resuscitation, medical interventions, and artificial nutrition with current treatment preferences. Comfort-focused POLSTs contained orders for do not resuscitate, comfort measures, and no artificial nutrition. Results: Overall, 55.7% (123/221) of residents and 44.7% (152/340) of surrogates participated (total n = 275). POLST concordance was 44%, but concordance was higher for comfort-focused POLSTs (68%) than for non-comfort-focused POLSTs (27%) (p < 0.001). In the unadjusted analysis, increasing resident age (OR 1.04, 95% CI 1.01-1.07, p < 0.01), better cognitive functioning (OR 1.07, 95% CI 1.02-1.13, p < 0.01), surrogate as the decision-maker (OR 2.87, OR 1.73-4.75, p < 0.001), and comfort-focused POLSTs (OR 6.01, 95% CI 3.29-11.00, p < 0.01) were associated with concordance. In the adjusted multivariable model, only having an existing comfort-focused POLST was associated with higher odds of POLST concordance (OR 5.28, 95% CI 2.59-10.73, p < 0.01). Conclusions: Less than half of all POLST forms were concordant with current preferences, but POLST was over five times as likely to be concordant when orders reflected preferences for comfort-focused care. Findings suggest a clear need to improve the quality of POLST use in nursing facilities and focus its use among residents with stable, comfort-focused preferences.Item Fear of Palliative Care: Roles of Age and Depression Severity(Mary Ann Liebert, 2022) Alonzi, Sarah; Perry, Laura M.; Lewson, Ashley B.; Mossman, Brenna; Silverstein, Madison W.; Hoerger, Michael; Psychology, School of ScienceBackground: Palliative care is underutilized due in part to fear and misunderstanding, and depression might explain variation in fear of palliative care. Objective: Informed by the socioemotional selectivity theory, we hypothesized that older adults with cancer would be less depressed than younger adults, and subsequently less fearful of utilizing palliative care. Setting/Subjects: Patients predominately located in the United States with heterogeneous cancer diagnoses (n = 1095) completed the Patient-Reported Outcomes Information System (PROMIS) Depression scale and rated their fear of palliative care using the Palliative Care Attitudes Scale (PCAS). We examined the hypothesized intercorrelations, followed by a bootstrapped analysis of indirect effects in the PROCESS macro for SPSS. Results: Participants ranged from 26 to 93 years old (mean [M] = 60.40, standard deviation = 11.45). The most common diagnoses were prostate (34.1%), breast (23.3%), colorectal (17.5%), skin (15.3%), and lung (13.5%) cancer. As hypothesized, older participants had lower depression severity (r = −0.20, p < 0.001) and were less fearful of palliative care (r = −0.11, p < 0.001). Participants who were more depressed were more fearful of palliative care (r = 0.21, p < 0.001). An indirect effect (β = −0.04, standard error = .01, 95% confidence interval: −0.06 to −0.02) suggested that depression severity may account for up to 40% of age-associated differences in fear of palliative care. Conclusions: Findings indicate that older adults with cancer are more likely to favor palliative care, with depression symptom severity accounting for age-related differences. Targeted interventions among younger patients with depressive symptoms may be helpful to reduce fear and misunderstanding and increase utilization of palliative care.Item Global Assessment of Palliative Care Need: Serious Health-Related Suffering Measurement Methodology(Elsevier, 2024) Kwete, Xiaoxiao J.; Bhadelia, Afsan; Arreola-Ornelas, Héctor; Mendez, Oscar; Rosa, William E.; Connor, Stephen; Downing, Julia; Jamison, Dean; Watkins, David; Calderon, Renzo; Cleary, Jim; Friedman, Joseph R.; De Lima, Liliana; Ntizimira, Christian; Pastrana, Tania; Pérez-Cruz, Pedro E.; Spence, Dingle; Rajagopal, M. R.; Vargas Enciso, Valentina; Krakauer, Eric L.; Radbruch, Lukas; Knaul, Felicia Marie; Medicine, School of MedicineContext: Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. Objectives: In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. Methods and results: The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. Conclusions: The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.Item Hospice Care for End Stage Liver Disease in the United States(Taylor & Francis, 2021) Orman, Eric S.; Johnson, Amy W.; Ghabril, Marwan; Sachs, Greg A.; Medicine, School of MedicineIntroduction: Patients with end-stage liver disease (ESLD) have impaired physical, psychological, and social functions, which can diminish patient quality of life, burden family caregivers, and increase healthcare utilization. For those with a life expectancy of less than six months, these impairments and their downstream effects can be addressed effectively through high-quality hospice care, delivered by multidisciplinary teams and focused on the physical, emotional, social, and spiritual wellbeing of patients and caregivers, with a goal of improving quality of life. Areas Covered: In this review, we examine the evidence supporting hospice for ESLD, we compare this evidence to that supporting hospice more broadly, and we identify potential criteria that may be useful in determining hospice appropriateness. Expert Opinion: Despite the potential for hospice to improve care for those at the end of life, it is underutilized for patients with ESLD. Increasing the appropriate utilization of hospice for ESLD requires a better understanding of patient eligibility, which can be based on predictors of high short-term mortality and liver transplant ineligibility. Such hospice criteria should be data-driven and should accommodate the uncertainty faced by patients and physicians.Item Identifying Goals of Care(Elsevier, 2020-09) Comer, Amber; Fettig, Lyle; Torke, Alexia M.; Medicine, School of MedicineGoals of care conversations are important but complex for clinicians caring for older adults. Although clinicians tend to focus on specific medical interventions, these conversations are more successful if they begin with gaining a shared understanding of the medical conditions and possible outcomes, followed by discussion of values and goals. Although training in the medical setting is incomplete, there are many published and online resources that can help clinicians gain these valuable skills.