Center for Palliative Care

Erwin, NC, United States

Center for Palliative Care

Erwin, NC, United States

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Unroe M.,Duke University | Kahn J.M.,University of Pennsylvania | Carson S.S.,University of North Carolina at Chapel Hill | Govert J.A.,Duke University | And 7 more authors.
Annals of Internal Medicine | Year: 2010

Background: Growing numbers of critically ill patients receive prolonged mechanical ventilation. Little is known about the patterns of care as patients transition from acute care hospitals to postacute care facilities or about the associated resource utilization. Objective: To describe 1-year trajectories of care and resource utilization for patients receiving prolonged mechanical ventilation. Design: 1-year prospective cohort study. Setting: 5 intensive care units at Duke University Medical Center, Durham, North Carolina. Participants: 126 patients receiving prolonged mechanical ventilation (defined as ventilation for ≥4 days with tracheostomy placement or ventilation for ≥21 days without tracheostomy), as well as their 126 surrogates and 54 intensive care unit physicians, enrolled consecutively over 1 year. Measurements: Patients and surrogates were interviewed in the hospital, as well as 3 and 12 months after discharge, to determine patient survival, functional status, and facility type and duration of postdischarge care. Physicians were interviewed in the hospital to elicit prognoses. Institutional billing records were used to assign costs for acute care, outpatient care, and interfacility transportation. Medicare claims data were used to assign costs for postacute care. Results: 103 (82%) hospital survivors had 457 separate transitions in postdischarge care location (median, 4 transitions [interquartile range, 3 to 5 transitions]), including 68 patients (67%) who were readmitted at least once. Patients spent an average of 74% (95% CI, 68% to 80%) of all days alive in a hospital or postacute care facility or receiving home health care. At 1 year, 11 patients (9%) had a good outcome (alive with no functional dependency), 33 (26%) had a fair outcome (alive with moderate dependency), and 82 (65%) had a poor outcome (either alive with complete functional dependency [4 patients; 21%] or dead [56 patients; 44%]). Patients with poor outcomes were older, had more comorbid conditions, and were more frequently discharged to a postacute care facility than patients with either fair or good outcomes (P < 0.05 for all). The mean cost per patient was $306 135 (SD, $285 467), and total cohort cost was $38.1 million, for an estimated $3.5 million per independently functioning survivor at 1 year. Limitation: The results of this single-center study may not be applicable to other centers. Conclusion: Patients receiving prolonged mechanical ventilation have multiple transitions of care, resulting in substantial health care costs and persistent, profound disability. The optimism of surrogate decision makers should be balanced by discussions of these outcomes when considering a course of prolonged life support. Primary Funding Source: None. © 2010 American College of Physicians.


Barclay J.S.,University of Virginia | Barclay J.S.,Veterans Affairs Medical Center | Barclay J.S.,Center for Palliative Care | Kuchibhatla M.,Veterans Affairs Medical Center | And 6 more authors.
JAMA Internal Medicine | Year: 2013

Importance: Terminally ill patients with lower incomes are less likely to die at home, even with hospice care. Objectives: To examine the relationship between income and transfer from home before death and the interaction between income and level of hospice care as a predictor of transfer from home in patients admitted to routine home hospice care. Design: We matched zip codes to US census tracts to generate median annual household incomes and divided the measure into $10 000 increments (≤$20 000 to >$50 000). We abstracted data from the central administrative and clinical database of a hospice care provider. We analyzed the relationship between income and transfer from home before death using logistic regression adjusted for demographics, diagnosis, region, and length of stay. Level of hospice care was examined as any continuous care vs none. Unlike routine care, which includes periodic visits by hospice, continuous care is a higher level of care used for short periods of crisis to keep a patient at home and includes hospice services in the home at least 8 hours in a 24-hour period. Setting: A for-profit hospice provider, VITAS Healthcare, operating 26 programs in 8 states. Participants: Hospice patients admitted to routine care in a private residence from January 1, 1999, through December 31, 2003. Main Outcome Measure: Transfer from hospice care in a private residence to hospice care in a site outside the home before death. Results: Of the 61 063 enrollees admitted to routine care in a private residence, 13 804 (22.61%) transferred from home to another location (ie, inpatient hospice unit or nursing home) with hospice care before death. Patients who transferred had a lower mean median household income ($42 585 vs $46 777; P<.001) and were less likely to have received any continuous care (49.38% vs 30.61%; P<.001). The median number of days of continuous care was 4. For patients who did not receive continuous care, the odds of transfer from home before death increased with decreasing median annual household incomes (odds ratio range, 1.26-1.76). For patients who received continuous care, income was not a predictor of transfer from home. Conclusions and Relevance: Patients with limited resources may be less likely to die at home, especially if they are not able to access needed support beyond what is available with routine hospice care. © 2013 American Medical Association. All rights reserved.


PubMed | University of Washington, University of Houston, Vrije Universiteit Brussel, Center for Palliative Care and 8 more.
Type: | Journal: European journal of pediatrics | Year: 2017

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n=40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR=0.91, 95% CI: 0.83-1.00) and Sweden (OR=0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys.This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: There is a scarcity of population-level studies investigating where children with CCC die in different countries. Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.


PubMed | Karolinska Institutet, University of Washington, Vrije Universiteit Brussel, Center for Palliative Care and 9 more.
Type: | Journal: Palliative medicine | Year: 2016

To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed.To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries.This is a cross-sectional study using death certificate data.All adults (18years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand (N=4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively.The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%-58%) than in the United States (41%-76%) and varied from 31%-83% in Hungary to 42%-79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs.These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level.


PubMed | Observatoire National de la Fin de Vie, University of Washington, University of Houston, Vrije Universiteit Brussel and 6 more.
Type: Journal Article | Journal: Social psychiatry and psychiatric epidemiology | Year: 2016

The places of death for people who died of suicide were compared across eight countries and socio-demographic factors associated with home suicide deaths identified.Death certificate data were analyzed; using multivariable binary logistic regression to determine associations.National suicide death rates ranged from 1.4 % (Mexico) to 6.4 % (South Korea). The proportion of suicide deaths occurring at home was high, ranging from 29.9 % (South Korea) to 65.8 % (Belgium). Being older, female, widowed/separated, highly educated and living in an urban area were risk factors for home suicide.Home suicide deaths need specific attention in prevention programs.


Glasdam S.,Copenhagen University | Timm H.,Center for Palliative Care | Vittrup R.,Center for Palliative Care
Clinical Nursing Research | Year: 2010

An increasing number of people today live with chronic diseases that affect their quality of life and that of their families. Health professionals confirm this finding based on their clinical interventions targeting families of chronically ill patients. The aim of this study was to describe and evaluate these interventions. A systematic literature review was conducted, including previous reviews and controlled studies from 1997 to 2007 of interventions targeting caregivers of adults with stroke, diabetes, cardiovascular disease, and cancer.Ten out of the 32 studies included found the interventions to have no effect, whereas effects were found in the other 22 studies in one or more areas, including burden, knowledge level, mastering skills, and satisfaction. The literature review concludes that the impact of these interventions is neither unique nor significant. The defined concepts of the randomized clinical studies appear problematic when implemented and underscore the importance of strict requirements on future randomized, controlled designs. © The Author(s) 2010.


Chapman M.D.,Center for Palliative Care | Le B.H.C.,Melbourne Health | Gorelik A.,Melbourne Health
BMJ Supportive and Palliative Care | Year: 2013

Objectives: Frailty denotes a vulnerability to poor outcomes and is a common risk factor for mortality in older persons. The Vulnerable Elders Survey (VES) is an easy to administer validated screening tool to detect a frail population. Assessment of frailty has the potential to aid in prognostication for the older community dwelling palliative population. This study seeks to evaluate the relationship of the VES to prognosis in this population. Methods: Prospective cohort study of patients over 65 years old admitted to a community palliative care service. The VES was performed in addition to the usual assessments of physical function. Comorbidity was assessed using the Charlson Comorbidity Index (CCI). Physical function and CCI were assessed to determine whether they improved the prognostic power of the VES. Patients were followed-up for 8 months with the primary endpoint of survival. Results: 197 patients completed the study with a high proportion of malignant diagnoses (87.5%); 98% of patients died during the study with a median survival of 61 days; 93.4% of patients were vulnerable on the VES and high risk scores predicted death within 100 days. Conclusions: In this study the VES demonstrated high rates of vulnerability and has the potential to improve the accuracy of prognosis in older palliative community dwelling patients. Improving prognostication has potential clinical benefits, including aiding clinical communication and determining the best use of community services. The limitations of this study and the evolving understanding of frailty suggest that further work in this area is required.


Steinhauser K.E.,United Road Services | Steinhauser K.E.,Center for Palliative Care | Steinhauser K.E.,Duke University | Arnold R.M.,University of Pittsburgh | And 8 more authors.
Journal of Pain and Symptom Management | Year: 2011

Context: At advanced stages, cancer, congestive heart failure (CHF), and chronic obstructive pulmonary disease (COPD) produce high rates of hospitalization, disability, and annual mortality. Despite similar prognoses, patients with cancer often are treated differently than those with other illnesses, the former being seen as terminal vs. chronic. Objectives: The purpose of this study was to compare the functional capacity, emotional well-being, and quality of life of patients in three disease groups to assess whether diagnosis distinguishes differences in patient experience, and compare patients with cancer and noncancer diagnoses. Methods: Baseline data from a cohort study of 210 patients who had an estimated 50% two-year mortality were analyzed. The patients had Stage IV breast, prostate, or colon cancer; Stage IIIb or IV lung cancer; New York Heart Association Stage III or IV CHF with a left ventricular ejection fraction of <40%; or COPD with hypercapnea (pC02 > 46) and at least one hospitalization or Emergency Department visit during the past year. Measures included the Rosow-Breslau Activities of Daily Living/Instrumental Activities of Daily Living tool, Profile of Mood States anxiety subscale, brief Centers for Epidemiologic Studies Depression Scale, and the Functional Assessment of Cancer Therapy-General quality-of-life instrument. Analyses included descriptive statistics, analysis of variance, and adjusted linear regression models. Results: A majority of illness outcomes did not differ by diagnostic category. Functional status was associated with diagnosis, with CHF and COPD patients faring worse than those with cancer. Overall, illness experience was most significantly related to disease severity, demographics, and emotional and social well-being. Conclusion: Comparing patients with advanced cancer, CHF, and COPD, illness experience was more similar than different. Patients living with life-limiting illnesses other than cancer may benefit from whole-person services often extended to cancer patients. © 2011 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.


Grant M.,Center for Palliative Care | Ugalde A.,Center for Palliative Care | Vafiadis P.,ISIS Primary Care | Philip J.,Center for Palliative Care
Supportive Care in Cancer | Year: 2014

Methods: Semi-structured interviews were held with patients presenting to a metropolitan general practice clinic in Melbourne, Australia. A grounded theory framework underpinned the data collection and thematic analysis undertaken.Results: Interviewees (15) were aged 24–81, with a variety of experiences with cancer care and previous morphine use. Interviewees were highly supportive of morphine use in cancer care, with this attitude founded on the perceived severity of cancer pain and the powerful nature of morphine. They described a number of reasons morphine may be used in cancer care: to treat pain, to enable peace and also as a treatment for cancer.Conclusion: The public view of morphine to emerge from this study is markedly different from that discussed in the myths of morphine. It is viewed as a medication that has the ability to provide peace and control both pain and the course of cancer. The participants in this study described a wish for greater involvement in pain control decisions, perceiving morphine as a facilitator rather than a barrier to good cancer care.Background: Morphine is widely used in cancer care, and understanding the concerns and perceptions of patients, family and friends is vital to managing pain and distress effectively. The ‘myths of morphine’ have frequently been discussed in medical literature, yet the extent to which such views are held is not clear. This qualitative project explores the perceptions and attitudes of the wider community towards morphine use in cancer care, to understand this ‘mythology’ according to those who in the future may themselves require its use. © 2014, Springer-Verlag Berlin Heidelberg.


PubMed | Center for Palliative Care
Type: Journal Article | Journal: Palliative & supportive care | Year: 2016

Ensuring a consistent and systematic approach to the delivery of care for people with advanced disease is a priority for palliative care services worldwide. Many clinical tools are available to aid in this process; however, they are often used sporadically, and implementation of a routine set of clinical tools to guide care planning in the specialist palliative care sector in Australia has not been achieved. This study sought to recommend key clinical tools that may assist with the assessment and care planning of specialist palliative care provision for patients and family caregivers admitted to specialist palliative care settings (home, hospital, and hospice).A mixed-methods sequential approach over four phases was employed, involving: (1) a palliative care sector survey, (2) a systematic literature review, (3) an appraisal of identified clinical tools, and (4) a focus group with an expert panel who critiqued and endorsed a final suite of clinical tools recommended for specialist palliative care.Twelve tools with practical relevance were recommended for use across settings of care.Palliative services should review current practices and seek to implement this recommended suite of tools to enhance assessment and guide care delivery across care settings. Subsequent evaluation should also occur.

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