Hospice Use Among Individuals With Severe Persistent Mental Illness

2020 ◽  
pp. 107839032091048
Author(s):  
Diana M. Hanan ◽  
Karen S. Lyons
Keyword(s):  
Mental Illness ◽  
End Of Life Care ◽  
Hospice Care ◽  
The United States ◽  
Factors Associated ◽  
Persistent Mental Illness ◽  
Advance Care ◽  
United States National Institute ◽  
Hospice Use ◽  
Fragmentation Of Care

BACKGROUND: Severe persistent mental illness (SPMI) currently affects an estimated 11.2 million adults in the United States (National Institute of Mental Health, 2019). Affected individuals are known to experience inequities in care, and on average, they die earlier than individuals without SPMI. Currently, little is known about hospice use among individuals with SPMI, including what factors contribute to the use of hospice services. OBJECTIVE: The aim of this integrated review was to identify factors associated with the use of hospice services by individuals with SPMI. STUDY DESIGN: A review of the available literature on this topic was performed in accordance with PRISMA guidelines. The databases Cumulative Index to Nursing and Allied Health Literature, PubMed, and PsycInfo were searched, and relevant records were identified. Ultimately, eight studies were identified and selected for analysis. RESULTS: Themes illustrating the factors associated with hospice use and, within them, challenges to obtaining hospice care were discovered. The three themes identified within the eight studies were fragmentation of care, inadequate communication, and the need for advance care planning. These patterns indicated that multiple barriers to utilizing hospice care exist for individuals with SPMI when compared with the general population. CONCLUSIONS: By recognizing and addressing factors influencing the use of hospice care, as well as barriers to receiving hospice, improved provision of timely end-of-life care that is consistent with individuals’ preferences may be facilitated.

scholarly journals Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Reviews of Recent Literature

2020 ◽  
pp. 104990912096658
Author(s):  
Mohsen Bazargan ◽  
Shahrzad Bazargan-Hejazi
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Scoping Review ◽  
End Of Life Care ◽  
Hospice Care ◽  
The United States ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Published Research

Objectives: Published research in disparities in advance care planning, palliative, and end-of-life care is limited. However, available data points to significant barriers to palliative and end-of-life care among minority adults. The main objective of this scoping review was to summarize the current published research and literature on disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanc Blacks. Methods: The scoping review method was used because currently published research in disparities in palliative and hospice cares as well as advance care planning are limited. Nine electronic databases and websites were searched to identify English-language peer-reviewed publications published within last 20 years. A total of 147 studies that addressed palliative care, hospice care, and advance care planning and included non-Hispanic Blacks were incorporated in this study. The literature review include manuscripts that discuss the intersection of social determinants of health and end-of-life care for non-Hispanic Blacks. We examined the potential role and impact of several factors, including knowledge regarding palliative and hospice care; healthcare literacy; communication with providers and family; perceived or experienced discrimination with healthcare systems; mistrust in healthcare providers; health care coverage, religious-related activities and beliefs on palliative and hospice care utilization and completion of advance directives among non-Hispanic Blacks. Discussion: Cross-sectional and longitudinal national surveys, as well as local community- and clinic-based data, unequivocally point to major disparities in palliative and hospice care in the United States. Results suggest that national and community-based, multi-faceted, multi-disciplinary, theoretical-based, resourceful, culturally-sensitive interventions are urgently needed. A number of practical investigational interventions are offered. Additionally, we identify several research questions which need to be addressed in future research.

Hospice Use Among Patients With Cancer: Trends, Barriers, and Future Directions

2020 ◽  
Vol 16 (12) ◽  
pp. 803-809
Author(s):  
Mihir N. Patel ◽  
Jonathan M. Nicolla ◽  
Fred A.P. Friedman ◽  
Michala R. Ritz ◽  
Arif H. Kamal
Keyword(s):  
End Of Life ◽  
Advanced Cancer ◽  
End Of Life Care ◽  
Hospice Care ◽  
Rapid Development ◽  
Spiritual Needs ◽  
Life Care ◽  
General Acceptance ◽  
Patients With Cancer ◽  
Hospice Use

Patients with advanced cancer and their families frequently encounter clinical and logistical challenges related to end-of-life care. Hospice provides interdisciplinary and holistic care to meet patients’ biomedical, psychosocial, and spiritual needs in the last phases of life. Despite increasing general acceptance and use among patients with cancer, hospice remains underused. Underuse stems from ongoing misconceptions regarding hospice and its purpose, coupled with the rapid development of novel anticancer treatments, such as immunotherapies and targeted therapies, that have changed the landscape of possibilities. Furthermore, rapid evolutions in how end-of-life care is structured and reimbursed for will affect how oncology patients will intersect with hospice care. In this review, we explore the current and future challenges to greater integration of hospice care in the care of patients with advanced cancer and propose five recommendations as part of the path forward.

Informal Caregivers’ Perceptions of Needs From Hospice Providers: An Integrative Review

2019 ◽  
Vol 36 (12) ◽  
pp. 1114-1123
Author(s):  
Ruth Anne Engbers
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Interpersonal Skills ◽  
Hospice Care ◽  
Informal Caregivers ◽  
The United States ◽  
Easy Access ◽  
Life Care ◽  
The United Kingdom ◽  
Formal Services

Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers. Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases. Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills. Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC’s transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.

scholarly journals End-of-Life Care among US Adults with ESKD Who Were Waitlisted or Received a Kidney Transplant, 2005–2014

2020 ◽  
Vol 31 (10) ◽  
pp. 2424-2433
Author(s):  
Catherine R. Butler ◽  
Peter P. Reese ◽  
James D. Perkins ◽  
Yoshio N. Hall ◽  
J. Randall Curtis ◽  
...  
Keyword(s):  
United States ◽  
End Of Life ◽  
Kidney Transplant ◽  
End Of Life Care ◽  
Reference Group ◽  
Deceased Donor ◽  
The United States ◽  
Life Care ◽  
Advance Care ◽  
Functioning Kidney

BackgroundThe care of patients in the United States who have ESKD is often shaped by their hopes and prognostic expectations related to kidney transplant. Little is known about how patients’ engagement in the transplant process might relate to patterns of end-of-life care.MethodsWe compared six measures of intensity of end-of-life care among adults in the United States with ESKD who died between 2005 and 2014 after experiencing differing exposure to the kidney transplant process.ResultsOf 567,832 decedents with ESKD, 27,633 (5%) had a functioning kidney transplant at the time of death, 14,653 (3%) had a failed transplant, 16,490 (3%) had been removed from the deceased donor waitlist, 17,010 (3%) were inactive on the waitlist, 11,529 (2%) were active on the waitlist, and 480,517 (85%) had never been waitlisted for or received a transplant (reference group). In adjusted analyses, compared with the reference group, patients exposed to the transplant process were significantly more likely to have been admitted to an intensive care unit and to have received an intensive procedure in the last 30 days of life; they were also significantly more likely to have died in the hospital. Those who died on the transplant waitlist were also less likely than those in the reference group to have been enrolled in hospice and to have discontinued dialysis before death.ConclusionsPatients who had engaged in the kidney transplant process received more intensive patterns of end-of-life care than other patients with ESKD. These findings support the relevance of advance care planning, even for this relatively healthy segment of the ESKD population.

Using cancer registry records linked with health insurance records to measure costs and services at end-of-life.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 186-186 ◽  
Author(s):  
Karma L. Kreizenbeck ◽  
Catherine R. Fedorenko ◽  
Kristine Stickney ◽  
Cara L McDermott ◽  
Ted Conklin ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Tumor Patients ◽  
Factors Associated ◽  
Western Washington ◽  
The Difference ◽  
Eol Care ◽  
Out Of Pocket Costs

186 Background: Studies suggest that end-of-life (EOL) care for persons with cancer in the United States is variable and often misaligned with patient and family preferences. To better understand these issues, we developed reports on high-priority quality indicators and costs at EOL. Methods: Surveillance, Epidemiology, and End Results (SEER) records for solid tumor patients diagnosed with cancer in Western Washington state between 1/1/2007 and 12/31/2015 were linked with enrollment and claims from two regional commercial insurers. Using claims, we then developed algorithms to characterize EOL care for breast, colorectal, and non-small cell lung cancer (NSCLC), including costs of care at 90- and 30-days prior to death. Costs include all claims paid for ED, hospital, outpatient, and pharmacy care. We estimated patient out-of-pocket costs as the difference between allowed and paid claim amounts. Results: See Table. Across the largest 10 clinics in the region there was considerable variability in the average costs of cancer care in the last 90 days of life. The clinic-specific average ranged from $24,532 to $72,931 for breast cancer, $30,495 to $65,975 for colorectal cancer and $23,320 to $59,641 for NSCLC. Conclusions: At the end of life, care for patients with advanced breast, lung, and colorectal cancer is highly variable, costly to patients, and may be misaligned with the goals and preferences for patients and their family members. While the results may reflect both appropriate and unnecessary care, the large variation across clinics suggests opportunities for improvement. Further research is needed to identify factors associated with use of low-value, high-cost services at the end of life. [Table: see text]

Hospice Use by Older Women Dying with Breast Cancer between 1991 and 1996

2003 ◽  
Vol 19 (1) ◽  
pp. 49-53 ◽  
Author(s):  
Nuha A. Lackan ◽  
Jean L. Freeman ◽  
James S. Goodwin
Keyword(s):  
Breast Cancer ◽  
Older Women ◽  
Hospice Care ◽  
Patient Characteristics ◽  
Geographic Area ◽  
The United States ◽  
Future Research ◽  
Time Period ◽  
Hospice Use ◽  
Medicare Database

The purpose of this study was to assess the use of hospice by women dying with breast cancer as a function of time period, geographic area, and patient characteristics. We used data from the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare database to study hospice care use in the United States in women aged 65 and older, diagnosed with breast cancer from 1986 to 1996, who died from 1991 to 1996. Of the 25,161 women who met those criteria, 5,198 (20.7%) were enrolled in hospice before they died. The rate of hospice use in this population increased from 11.5% in 1991 to 27.1% in 1996. Use of hospice care was inversely related to age and was higher among those who were married. There were no differences in use by ethnicity. Rates of use varied significantly by geographic area. Future research should further examine why rates of hospice use differ by geographic area and certain patient characteristics.

scholarly journals Palliative Care and Hospice: A Paradigm for End-of-Life Care in Developing Nations

2017 ◽  
Vol 6 (2) ◽  
pp. 38-44 ◽  
Author(s):  
Peter A. Clark
Keyword(s):  
United States ◽  
Palliative Care ◽  
End Of Life Care ◽  
Hospice Care ◽  
The United States ◽  
Developing Nations ◽  
Comfort Care ◽  
Loved One ◽  
Legal Perspective ◽  
Fear Of Abandonment

Traditionally, medical care has had two mutually exclusive goals: either to cure disease and to prolong life or to provide comfort care. Given this dichotomy, the decision to focus on reducing suffering is made usually only after life-prolonging treatment has been ineffectual and death is imminent, usually by days or hours. As a result, one of the best kept secrets in a hospital today in the United States is palliative care and hospice care. We estimate that of the 2.4 million Americans that die each year, about 80% end their lives in hospitals attached to the latest advances in technology; 300,000 die at home under hospice care. The reasons why more people do not receive palliative or hospice care range from the patient’s fear of abandonment and the unknown, the family’s denial of the inevitability of death of their loved one, and physician’s denial of medicine’s limitations. Unless the options of palliative or hospice care are given to patients the fears that people have of dying--fear of dying alone and fear of dying in pain--will continue to make the dying process one that lacks dignity and respect. In this review article we have reviewed the state of palliative and hospice care in the United States through a historical, ethical and legal perspective. We have discussed its scope in the developing world and the potential challenges.Journal of Advances in Internal Medicine 2017;06(02):38-44.

scholarly journals Hispanics and Hospice Care: A Systematic Review

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 329-330
Author(s):  
Valeria Cardenas ◽  
Susan Enguidanos ◽  
Gillian Fennell
Keyword(s):  
End Of Life ◽  
Hospice Care ◽  
Meta Analysis ◽  
Full Range ◽  
Symptom Relief ◽  
The United States ◽  
Cultural Barriers ◽  
Comprehensive Overview ◽  
Mesh Terms ◽  
Hospice Use

Abstract Hospice care has demonstrated improved pain and symptom relief for patients at end-of-life, however, Hispanics have significantly lower rates of hospice use compared to Whites. Moreover, few studies have examined factors associated with these lower enrollment rates and barriers to hospice care experienced by Hispanics. This systematic literature review aims to provide a comprehensive overview of studies examining Hispanic hospice use. We conducted a comprehensive search using three electronic databases (Ovid Medline, EMBASE, and CINAHL) from January 1946 to March 2019 using MESH terms for Hispanics, hospice, and end-of-life care. Our review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P). Studies of Hispanic adults living in the United States that examined hospice use, outcomes of care, or knowledge and attitudes towards hospice were included. Commentaries, case studies, editorials, literature reviews were excluded. Of the 4,230 abstracts reviewed, 43 peer-reviewed articles met the inclusion criteria. Among these studies, barriers to hospice among Hispanics included lack of hospice knowledge and awareness, language barriers, and cultural barriers. Among most studies, Hispanics were less likely to receive hospice care than Whites, although some studies found that among those that enrolled in hospice, Hispanics had longer lengths of stay than whites. Overall few studies examined Hispanics use of hospice, and among those we found most were of moderate and low quality. More research is needed to understand the full range of Hispanics experiences of hospice care. Such research could guide efforts to develop culturally tailored care for this community.

scholarly journals 458 - End-of-life decision-making capacity in an elderly patient with schizophrenia and terminal cancer

2020 ◽  
Vol 32 (S1) ◽  
pp. 179-179
Author(s):  
C Kotzé ◽  
JL Roos
Keyword(s):  
Decision Making ◽  
Mental Illness ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Decision Making Capacity ◽  
Advance Care ◽  
End Of Life Decision

Medical practitioners are confronted on a daily basis with decisions about patients’ capacity to consent to interventions. To address some of the pertinent issues with these assessments, the end -of-life decision-making capacity in a 72-year old lady with treatment resistant schizophrenia and terminal cancer will be discussed.In the case discussed there were differences in opinion about the patients decision-making capacity. In light of this, the role of the treating clinician and importance of health-related values in capacity assessment are highlighted. It is recommended that the focus of these assessments can rather be on practical outcomes, especially when capacity issues arise. This implies that the decision-making capacity of the patient is only practically important when the treatment team is willing to proceed against the patient’s wishes. This shifts the focus from a potentially difficult assessment to the simpler question of whether the patient’s capacity will change the treatment approach.Compared to the general population, people with serious mental illness have higher rates of physical illness and die at a younger age, but they do not commonly access palliative care services and are rarely engaged in end-of-life care discussions. Older people with serious mental illness can engage in advance care planning. Conversations about end -of-life care can occur without fear that a person’s psychiatric symptoms or related vulnerabilities will undermine the process. Clinicians are also advised to attend to any possible underlying issues, instead of focusing strictly on capacity. Routine documentation of end-of-life care preferences can support future decision making for family and clinicians at a time when patients are unable to express their decisions.More research about palliative care and advance care planning for people with serious mental illness is needed. This is even more urgent in light of the COVID-2019 pandemic, as there are potential needs for rationing of health care in the context of scarce resources. Health services should consider recommendations that advanced care planning should be routinely implemented. These recommendations should not only focus on the general population and should include patients with serious mental illness.

Parity and Difference: The Value of Parity Legislation for the Seriously Mentally Ill

2003 ◽  
Vol 29 (2-3) ◽  
pp. 185-201
Author(s):  
John V. Jacobi
Keyword(s):  
Mental Health ◽  
United States ◽  
Mental Illness ◽  
Mental Health Services ◽  
Health Services ◽  
Serious Mental Illness ◽  
The United States ◽  
Persistent Mental Illness ◽  
Seriously Mentally Ill ◽  
People With Mental Illness

Mental illness affects the health status of about one in five Americans each year. More than five percent of adult Americans have a “serious” mental illness—an illness that interferes with social functioning. About two and one-half percent have “severe and persistent” mental illness, a categorization for the most disabling forms of mental illness, such as schizophrenia and bipolar disorder. All mental illness interferes to some degree with social activities. Left untreated, serious mental illness can be disabling—disrupting family life, employment status and the ability to maintain housing. Nevertheless, privately insured people in the United States (that is, the majority of insured people in the United States) are not covered for mental health services to the same extent that they are covered for physical health services. Second-class coverage of mental health services reduces access to care for people with mental illness because cost becomes a significant barrier to service. The resulting lack of treatment fuels the disabling potential of mental illness.

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