Palliative and Spiritual Care of Persons with HIV and AIDS

2010 ◽  
Author(s):  
Mary Ann Cohen ◽  
Joseph Z. Lux
Keyword(s):  
Palliative Care ◽  
Spiritual Care ◽  
Cultural Sensitivity ◽  
Care Delivery ◽  
Clinical Care ◽  
Symptom Control ◽  
Hiv And Aids ◽  
Hiv Care ◽  
Hospice Movement ◽  
Health Organization

Palliative care of persons with HIV and AIDS has changed over the course of the first three decades of the pandemic. The most radical shifts occurred in the second decade with the introduction of combination antiretroviral therapy and other advances in HIV care. In the United States and throughout the world, progress in prevention of HIV transmission has not kept pace with progress in treatment, thus the population of persons living with AIDS continues to grow. Furthermore, economic, psychiatric, social, and political barriers leave many persons without access to adequate HIV care. As a result, persons who lack access to care may need palliative care for late-stage AIDS while persons with access to AIDS treatments are more likely to need palliative care for multimorbid medical illnesses such as cardiovascular disease, cancer, pulmonary disease, and renal disease. Palliative care of persons with HIV and AIDS cannot be confined to the end of life. We present palliative care on a continuum as part of an effort to alleviate suffering and attend to pain, emotional distress, and existential anxiety during the course of the illness. We will provide guidelines for psychiatric and palliative care and pain management to help persons with AIDS cope better with their illnesses and live their lives to the fullest extent, and minimize pain and suffering for them and their loved ones. This chapter reviews basic concepts and definitions of palliative and spiritual care, as well as the distinct challenges facing clinicians involved in HIV palliative care. Finally, issues such as bereavement, cultural sensitivity, communication, and psychiatric contributions to common physical symptom control are reviewed. The terms palliative care and palliative medicine are often used interchangeably. Modern palliative care has evolved from the hospice movement into a more expansive network of clinical care delivery systems with components of home care and hospital-based services (Butler et al., 1996; Stjernsward and Papallona, 1998). Palliative care must meet the needs of the “whole person,” including the physical, psychological, social, and spiritual aspects of suffering (World Health Organization, 1990).

Palliative Care and Spiritual Care of Persons with HIV and AIDS

2017 ◽  
Author(s):  
Anna L. Dickerman ◽  
Yesne Alici ◽  
William Breitbart ◽  
Harvey Max Chochinov
Keyword(s):  
Palliative Care ◽  
Spiritual Care ◽  
Cultural Sensitivity ◽  
Symptom Control ◽  
Physical Symptom ◽  
The United States ◽  
Hiv And Aids ◽  
Course Of Illness ◽  
Doctor Patient Communication ◽  
Medical Interventions

The meaning and role of palliative and spiritual care have evolved over the last decades, along with the dramatically changing clinical picture of AIDS. Although advances in antiretroviral therapy and medical interventions have allowed persons with HIV/AIDS and access to care to live longer and healthier lives, many persons in the United States and throughout the world continue to die of AIDS. There is an increased need for a comprehensive, multidisciplinary approach to care including psychosocial and family support. Curative, palliative, and spiritual care should be integrated, without dichotomizing curative and palliative approaches, in order to meet the challenges of AIDS throughout the course of illness. This chapter reviews basic concepts of palliative and spiritual care, as well as specific challenges facing clinicians involved in HIV palliative care. Finally, issues such as bereavement, demoralization, dignity, meaning, cultural sensitivity, doctor–patient communication, and psychiatric contributions to physical symptom control are reviewed.

Palliative care delivery models

2021 ◽  
pp. 111-120
Author(s):  
Irene J. Higginson
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Clinical Care ◽  
Symptom Control ◽  
Palliative Care Service ◽  
Specialist Palliative Care ◽  
Course Of Illness ◽  
Medical Speciality ◽  
Care Services ◽  
Healthcare Settings

Palliative care has grown rapidly across the globe, with a network of services. It is variably a medical speciality or subspeciality, often with academic departments and with different levels of integration. As the population ages and as treatments extend life for children, younger and older people with chronic diseases, and in particular as multimorbidity is growing, so palliative care is more important. Specialist palliative care service are dedicated to palliative care, have staff trained in palliative care, and in addition to providing clinical care, engage in education, research, and the measurement of outcomes. As palliative care extends to support patients with organ failure, dementia, and earlier in the course of illness, new models are emerging. These include short-term palliative care services, working in an integrated way with other services. Principles common to all services include a holistic approach (physical, emotional, social, and spiritual), considering the patient and those important to them as the unit of care, and with impeccable attention to listening, communication, individualized care, and support in decision-making. People with advanced and progressive illness are found in almost all healthcare settings. Therefore, all doctors, nurses, and other health and social care professionals have to offer and know general palliative care and symptom control. Specialist palliative care teams often support those working in general settings with specific tools and/or training.

Pathways, partners and payers: The trifecta of palliative care integration.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 129-129
Author(s):  
Diane G. Portman ◽  
Sarah Thirlwell
Keyword(s):  
Palliative Care ◽  
Strategic Alliance ◽  
Care Delivery ◽  
Clinical Pathways ◽  
Clinical Care ◽  
Symptom Control ◽  
Hematologic Malignancies ◽  
Cancer Center ◽  
Care Pathways ◽  
Disease States

129 Background: Moffitt Cancer Center has developed proprietary oncology clinical pathways. Multiple external partnership agreements which require adoption of these pathways have been completed. Our Center has enacted new cancer care delivery and payment arrangements with payers to foster cost and quality balance via use of the pathways and earlier involvement of palliative care (PC). Methods: Executive and PC leadership collaborated with the clinical pathways and strategic alliance teams to identify high priority disease states for integration of PC. Working with oncologist pathway developers, critical junctures in the pathways for inclusion of PC consultation were proposed and refined. EHR mechanisms to promote pathway adherence by clinicians were initiated. The value of pathway utilization and care coordination to involve PC was promoted to prospective oncology partners and payers. Results: PC has been mandated in oncology clinical care pathways, with a focus on thoracic, breast, gastrointestinal, prostate, gynecologic and hematologic malignancies, as directed by specific payer arrangements. Partnerships have expanded, resulting in greater utilization of PC by other centers as well. Increased referral volumes to PC, broader symptom control, and enhanced advance care planning have resulted. Conclusions: Incorporation of PC in oncologic clinical care pathways, with dissemination to internal providers, external partners and as part of novel payment models, optimizes PC integration. [Table: see text]

Principles of Palliative Care

2014 ◽  
pp. 3-10 ◽  
Author(s):  
William S. Breitbart
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Clinical Care ◽  
Early Palliative Care ◽  
Life Threatening Illness ◽  
Hospice Movement ◽  
Medical Discipline ◽  
Life Threatening ◽  
Research Findings

Palliative medicine refers to the medical discipline of palliative care. Modern palliative care has evolved from the hospice movement into a more expansive network of clinical care delivery systems with components of home care and hospital-based services. Palliative care begins with the onset of a life-threatening illness and proceeds past death to include bereavement interventions for family and others, with a mission to meet the physical, psychological, social, spiritual, and existential needs of the “whole patient.“ This chapter includes an overview of definitions of palliative care, the global need for palliative care, and ideal components of palliative care programs. A comprehensive review of the most recent research findings on impact of early palliative care on quality of life and survival is provided.

Psychosocial Palliative Care

2014 ◽  
Author(s):  
International Psycho-Oncology Society
Keyword(s):  
Palliative Care ◽  
Cultural Sensitivity ◽  
Symptom Control ◽  
Physical Symptom ◽  
Global Perspective ◽  
Life Threatening Illness ◽  
Online Resource ◽  
Life Threatening ◽  
Psychiatric Complications ◽  
And Training

This online resource guides the psycho-oncologist through the most salient aspects of effective psychiatric care of patients with advanced illnesses. It reviews basic concepts and definitions of palliative care and the experience of dying, the assessment and management of major psychiatric complications of life-threatening illness, including psychopharmacologic and psychotherapeutic approaches, and covers issues such as bereavement, spirituality, cultural sensitivity, communication and psychiatric contributions to common physical symptom control. A global perspective on death and palliative care is taken throughout, and an appendix provides a comprehensive list of international palliative care resources and training programs.

scholarly journals Palliative medicine in the intensive care unit: needs, delivery, quality

2021 ◽  
pp. bmjspcare-2020-002795
Author(s):  
Stephanie A Hill ◽  
Abdul Dawood ◽  
Elaine Boland ◽  
Hannah E Leahy ◽  
Fliss EM Murtagh
Keyword(s):  
Palliative Care ◽  
Intensive Care ◽  
Length Of Stay ◽  
Care Delivery ◽  
Multiorgan Failure ◽  
Symptom Control ◽  
Palliative Care Team ◽  
Care Team ◽  
Specialist Palliative Care ◽  
Treatment Limitation

Background15%–20% of critical care patients die during their hospital admission. This service evaluation assesses quality of palliative care in intensive care units (ICUs) compared with national standards.MethodsRetrospective review of records for all patients who died in four ICUs (irrespective of treatment limitation) between 1 June and 31 July 2019. Descriptive statistics reported for patient characteristics, length of stay, admission route, identification triggers and palliative care delivery.ResultsForty-five patients died, two records were untraced, thus N=43. The dying process was recognised in 88% (n=38). Among those where dying was recognised (N=35), 97% (34) had documented family discussion before death, 9% (3) were offered religious/spiritual support, 11% (4) had review of hydration/nutrition and 6% (2) had documented preferred place of death. Prescription of symptom control medications was complete in 71% (25) opioids, 34% (12) haloperidol, 54% (19) midazolam and 43% (15) hyoscine. Combining five triggers—length of stay >10 days prior to ICU admission 7% (3), multiorgan failure ≥3 systems 33% (14), stage IV malignancy 5% (2), post-cardiac arrest 23% (10) and intracerebral haemorrhage requiring mechanical ventilation 12% (5)—identified 60% (26) of patients. Referral to the palliative care team was seen in 14% (5), and 8% (3) had specialist palliative care team review.ConclusionsRecognition of dying was high but occurred close to death. Family discussions were frequent, but religious/spiritual needs, hydration/nutrition and anticipatory medications were less often considered. The ICUs delivered their own palliative care in conjunction with specialist palliative care input. Combining five triggers could increase identification of palliative care needs, but a larger study is needed.

scholarly journals Factors Affecting the Implementation of Electronic Antiretroviral Therapy Adherence Monitoring and Associated Interventions for Routine HIV Care in Uganda: Qualitative Study

10.2196/18038 ◽  
2020 ◽  
Vol 22 (9) ◽  
pp. e18038
Author(s):  
Jessica E Haberer ◽  
Lindsey Garrison ◽  
John Bosco Tumuhairwe ◽  
Robert Baijuka ◽  
Edna Tindimwebwa ◽  
...  
Keyword(s):  
Health Care ◽  
Antiretroviral Therapy ◽  
Clinical Outcomes ◽  
Care Delivery ◽  
Low Cost ◽  
Clinical Care ◽  
Hiv Care ◽  
Health Care Administrators ◽  
Adherence Monitoring ◽  
Data Informed

Background High, sustained adherence to HIV antiretroviral therapy (ART) is critical for achieving viral suppression, which in turn leads to important individual health benefits and reduced secondary viral transmission. Electronic adherence monitors record a date-and-time stamp with each opening as a proxy for pill-taking behavior. These monitors can be combined with interventions (eg, data-informed adherence counseling, SMS-based adherence support, and/or alarms) and have been shown to improve adherence in multiple settings. Their use, however, has largely been limited to the research context. Objective The goal of the research was to use the Consolidated Framework for Implementation Research (CFIR) to understand factors relevant for implementing a low-cost electronic adherence monitor and associated interventions for routine HIV clinical care in Uganda. Methods We conducted in-depth qualitative interviews with health care administrators, clinicians, and ART clients about likes and dislikes of the features and functions of electronic adherence monitors and associated interventions, their potential to influence HIV care, suggestions on how to measure their value, and recommendations for their use in routine care. We used an inductive, content analysis approach to understand participant perspectives, identifying aspects of CFIR most relevant to technology implementation in this setting. Results We interviewed 34 health care administrators/clinicians and 15 ART clients. Participants largely saw the monitors and associated interventions as favorable and beneficial for supporting adherence and improving clinical outcomes through efficient, differentiated care. Relevant outside factors included structural determinants of health, international norms around supporting adherence, and limited funding that necessitates careful assessment of costs and benefits. Within the clinic, the adherence data were felt likely to improve the quality of counseling and thereby morale, as well as increase the efficiency of care delivery. Existing infrastructure and care expenditures and the need for proper training were other noted considerations. At the individual level, the desire for good health and a welcomed pressure to adhere favored uptake of the monitors, although some participants were concerned with clients not using the monitors as planned and the influence of poverty, stigma, and need for privacy. Finally, participants felt that decisions around the implementation process would have to come from the Ministry of Health and other funders and would be influenced by sustainability of the technology and the target population for its use. Coordination across the health care system would be important for implementation. Conclusions Low-cost electronic adherence monitoring combined with data-informed counseling, SMS-based support, and/or alarms have potential for use in routine HIV care in Uganda. Key metrics of successful implementation will include their impact on efficiency of care delivery and clinical outcomes with careful attention paid to factors such as stigma and cost. Further theory-driven implementation science efforts will be needed to move promising technology from research into clinical care. Trial Registration ClinicalTrials.gov NCT03825952; https://clinicaltrials.gov/ct2/show/NCT03825952

Barriers to the delivery of palliative care

2015 ◽  
Author(s):  
Barry J.A. Laird
Keyword(s):  
Palliative Care ◽  
Clinical Care ◽  
World Health ◽  
Human Right ◽  
Care Services ◽  
The World ◽  
Effective Delivery ◽  
Palliative Care Services ◽  
The Many ◽  
Health Organization

This chapter discusses several key barriers to the delivery of palliative care, firstly considering the definition of ‘palliative care’. It describes the World Health Organization (WHO) definition and notes that the ideology of palliative care being a concept with which to approach management of patients may still not be fully understood. Furthermore, the differences between generalist and specialist palliative care may also contribute to confusion. Although palliative care as a concept has largely been embraced throughout the world, its implementation into routine clinical care is lacking. Essential to the change from palliative care being a principle available to the few, to being available to all, and a human right, is the need to address the many barriers to the efficient and effective delivery of high-quality palliative care. The chapter argues that the WHO is the key group necessary to develop palliative care worldwide and, together with international palliative care organizations, to help countries advance palliative care services.

Integration of spiritual care into palliative care service delivery models

2021 ◽  
pp. 1072-1080
Author(s):  
Yvan Beaussant ◽  
Alexandra Nichipor ◽  
Tracy A. Balboni
Keyword(s):  
Palliative Care ◽  
Spiritual Care ◽  
Care Delivery ◽  
Palliative Care Team ◽  
Care Team ◽  
Clear Understanding ◽  
Care Provision ◽  
Serious Illness ◽  
Palliative Care Teams ◽  
Religious Dimensions

Addressing spirituality within serious illness is a core dimension of palliative care delivery. However, spiritual care frequently lacks integration within the care of patients and families facing serious illness. This chapter discusses the integration of spiritual care into palliative care delivery. Requisite to this integration is a clear understanding of definitions and palliative care guidelines informing spiritual care provision. Furthermore, integration is informed and motivated by a large body of evidence showing how spiritual and religious factors frequently play salient roles in serious illness and influence palliative care outcomes. The integration of spiritual care into palliative care practice relies on a generalist–specialist model, within which all members of the interdisciplinary palliative care team are responsible for spiritual care provision. Non-spiritual care specialist members of the palliative care team are responsible for generalist spiritual care delivery, including taking spiritual histories and screening for spiritual needs. The care team also includes spiritual care specialists, typically board-certified chaplains, who provide in-depth spiritual care delivery to patients and families and aid the care team in understanding the spiritual and religious dimensions of care. Additionally, data regarding tested spiritual care interventions are discussed as potential tools palliative care teams can employ to improve patient care and outcomes. Finally, the integration of spiritual care into palliative care teams presents both opportunities and challenges that must be considered as efforts needed to foster more seamless spiritual care delivery within palliative care.

A Public Health Approach to Palliative Care in the Canadian Context

2019 ◽  
Vol 37 (7) ◽  
pp. 492-496 ◽  
Author(s):  
Giovanna Sirianni
Keyword(s):  
Public Health ◽  
Palliative Care ◽  
Care Delivery ◽  
World Health ◽  
Public Health Approach ◽  
Multiple Streams ◽  
Multiple Streams Framework ◽  
Canadian Context ◽  
Health Organization

Palliative care helps improve the quality of life of individuals facing life-limiting illness throughout the course of their disease. In Canada, delivery and access to palliative care has been fraught with challenges including differential availability of services based on geography, funding, language, and socioeconomic status. Many groups, including the World Health Organization, have advocated for a public health approach to palliative care as an antidote to fragmented service delivery. Multiple scholars, academics, and public health advocates have suggested that a public health approach to palliative care can help with issues of access, equity, and cost. Through the lens of Kingdon’s Multiple Streams Framework, this commentary will explore potential reasons why a public health approach to palliative care has not been adopted in the Canadian context and why this is an opportune time to consider this policy innovation. The Compassionate Communities concept is discussed as a potential solution to a public health approach to palliative care delivery.

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