Health care is in crisis worldwide, with millions suffering from life-limiting illness and disease. Many current health care models exclude the voices of those they serve, resulting in sub-optimal care and outcomes.
To begin addressing this need, Altarum Institute led the first research and demonstration project of Decent Care Values, a unique model that constructs care based on affected people voicing what they need and want while living with disease and illness.
The Diana, Princess of Wales Memorial Fund (The Diana Fund) recently awarded an additional grant to Altarum to support the dissemination of the Decent Care Values in a Palliative Care Demonstration Project results. Results may appear in upcoming forums, conferences or publications.
The Decent Care Values in a Palliative Care Demonstration Project began in 2009 when Altarum, the World Health Organization and The Diana Fund joined together to explore possibilities for using palliative care services as the platform on which to launch Decent Care Values in the care of people affected by cancer and HIV/AIDS.
Decent Care Values is an innovative model aimed at transforming and improving health care at three levels: individual, social and systemic; and seeking to bridge human rights principles with the practice of medicine to improve health care. The six Decent Care values are: Agency and Dignity (personal decision power and respect), Interdependence and Solidarity (connecting with providers and community) and Subsidiarity and Sustainability (aligning and influencing systems resources).
To demonstrate the implementation of Decent Care Values for the first time in real-world settings, Altarum conducted an international competition and commissioned grants to palliative organizations care in Kuala Lumpur, Malaysia and Nairobi, Kenya.
The two grantees were funded in 2010 for an 18-month study during which Altarum provided ongoing support and on-site technical assistance and evaluation support to ensure that each grantee had the tools needed to be successful. In Kenya, the grantee used Decent Care Values to improve its capability to provide home-based palliative care services and to deliver opioids, and established new partnerships with hospitals and the Ministry of Health.
In Malaysia, the grantee used Decent Care Values to create new tools to empower affected persons and help caregivers feel less isolated and better able to care for families; these tools are now being used by the Ministry of Health to create changes in the local care system.
The demonstration projects made significant improvements in their direct services to over 1,500 patients and their families. They also reported improved patient survival, satisfaction, and pain management, and enhanced relationships internally and within health systems. Altarum will use its new grant from The Diana Fund to submit abstracts to palliative care journals that will outline the successes, lessons learned and implications of the findings.
Applying Decent Care Values to real-world applications within Kenyan and Malaysian cultures proved to be feasible and rewarding. Although the two locations are radically different, both found resonance and applicability of the values. This project has also demonstrated that using a values-based approach can facilitate change in either a resource-poor or a resource-rich environment – it levels the playing field for all.
Finally, the values provided a way for communities to engage in dialogue with affected people about what they need and what they value in health care settings to create paths forward to address needs and gaps at the individual, community and social levels.
The Diana, Princess of Wales Memorial Fund
The Diana, Princess of Wales Memorial Fund continues the Princess’ humanitarian work in the U.K. and overseas. By giving grants to organizations, championing charitable causes, advocacy, campaigning, and awareness raising, the Fund works to secure sustainable improvements in the lives of the most vulnerable people in the U.K. and around the world. www.theworkcontinues.org
What are Decent Care Values?
Decent Care Values directly address the disadvantage of marginalization at the individual level by asserting the rights and power of the individual to identify her or his own needs (agency and dignity). These values address the disadvantages of stratified and compartmentalized care by attending to the resources and strengths of families and communities (solidarity and interdependence). Decent Care Values address also the continuing disadvantages of inadequate resource allocation from policy and systems levels through the values of subsidiarity and sustainability. Finally, Decent Care Values have the potential to address the disadvantages known to exist at health systems and policy levels, where lack of clear or unified values has created systems of care that exacerbate problems for vulnerable and marginalized people.
Agency and Dignity - Agency and dignity are in many ways the centerpiece of Decent Care. These are the values that focus on the inherent value that all humans share, the recognition of the unique needs each individual has, and the direct control and decision-making every individual should have in the care he or she receives and how he or she receives it. At the root of the care process, every affected individual must be recognized as having the power (the agency) to construct, direct, and manage the care he or she receives (or elects not to receive).
Interdependence and Solidarity - Interdependence and solidarity are social values that focus on the unique relationship all individuals have to their particular social contexts and the communities around them. Interdependence and solidarity focus on the social nature of being cared for and caring for another – caring as a social process. The value of interdependence helps or benefits not only affected people and their families and communities, but also the caregivers who serve them. Solidarity focuses on the specific communities each individual identifies with and how people live together and advocate for each other. Despite the many differences that separate individuals and communities, the real challenge is to find ways for individuals to stand by and with each other.
Subsidiarity and Sustainability - The final two values of Decent Care, subsidiarity and sustainability, draw attention to the systemic nature of the provision of care and to issues such as need assessments, resource allocation, health care models, and the short- and long-term development of access to care. The fundamental concept of subsidiarity is straightforward: The individuals or groups closest to problems “on the ground,” who deal with the problems or issues directly and at the most fundamental level, should be the ones who help to resolve those issues or problems and help inform funding decisions. For a community, this means that care processes are developed and implemented directly around those needing or receiving care (the affected individual), and that those who receive care help develop their own care processes. Subsidiarity is also about creating and sustaining priorities that support Decent Care Values. There is one overarching challenge to sustainability in health care systems – sustainability does not mean sustaining the status quo. Rather, it means being open to and aware of who has access to care and who does not – sustainability does not close the door on these issues: It should always be an open and reflective process that places the affected individual and the goal of humans flourishing at its center.
Background and Overview
Decent Care Values (DCV) is an innovative, values-based model to transform health care at three levels - individual, social, and systemic - and to bridge human rights principles with the practice of medicine. The six values are: agency and dignity (personal decision power and respect), interdependence and solidarity (connecting with providers and community), and subsidiarity and sustainability (aligning and influencing systems resources). The six values form a unique model that constructs care based on affected people voicing what they need and want while living with life-limiting disease and illness.
Overview of the Altarum DCV Demonstration Project
The DCV philosophy of care was developed by the World Health Organization (WHO), international ethicists, people affected by life-limiting illnesses (affected people), philosophers, social scientists, and religious leaders to help create a framework within which people living with illness have the ability to construct, direct, and manage their care.
The Altarum Decent Care Values in Palliative Care Services Project (Decent Care Values Project) builds upon the philosophy of DCV. The Decent Care Values Project features demonstration projects in organizations from the WHO regions of Africa (AFRO) and the Western Pacific (WPRO).
Applying DCV has untapped potential to redefine how care is constructed and delivered, and to improve the systems of care that serve all people, but especially those who live on the margins of society. For example, globally, the poor and marginalized are at greatest risk for HIV/AIDS. Despite the increased availability of anti-retroviral treatment, in 2008, 1,776,300 people died of HIV/ AIDS. Cancer death rates are no better, it is estimated that globally, 7.6 million people die of cancer every year. Many people do not have access to palliative care, which focuses on pain and symptom control, psychosocial, spiritual, and family support. Additionally, many people are not treated in a way that embraces the DCV, which reflect a holistic, integrated care system that centers on the affected person and supports them in their living or in their dying.
Altarum Institute led the Decent Care Values Project using its own internal research and development funds, supplemented by grants and contracts with the World Health Organization (WHO) and the Diana, Princess of Wales Memorial Fund. The project’s goal was to use palliative care services for people affected by cancer and HIV/AIDS as the first health care arena for understanding the effects of Decent Care Values (DCV) on the delivery of health services. An international advisory committee comprising leaders from health care systems and palliative care, WHO regional staff, the U.S. Agency for International Development, funding partners, and people who live with or are affected by illness and disease provided support and advised the project.
On 15 April 2010, Altarum released a request for funding package via Internet to more than 150 participants from the DCV global and regional meetings. Eligible organizations were invited to apply for up to US$15,000 to fund year-long demonstration projects in WHO global regions of the Western Pacific, the Middle East and Sub-Saharan Africa. We received 11 applications from the Western Pacific and Sub-Saharan Africa regions. A review committee with representatives from the International Advisory Committee, the project team, and people affected by life-limiting illnesses was convened and selected two palliative care non-governmental organization grantees in Kuala Lumpur, Malaysia (Hospis Malaysia), and Nairobi, Kenya (Kibera Community Self-Help Program (KICOSHEP), to demonstrate for the first time, in real-world settings, the implementation of DCV.
Each applicant was invited to design a demonstration project to answer research questions about the impact of applying DCV in palliative care services. The demonstration projects participated in a year-long program of technical assistance and evaluation that enabled them to develop the skills and knowledge required to infuse their programs with DCV. The formative research gathered from the two demonstration projects aimed to expand the body of knowledge on DCV.
Kibera Community Self-Help Program (KICOSHEP) applied for and received a grant from Altarum Institute to conduct a demonstration of the application of Decent Care Values (DCV) in palliative care. KICOSHEP works at the community and national levels to help people cope with the effects of HIV/AIDS, providing special attention to the needs of women, people living with HIV/ AIDS (PLWHA), young people, sex workers, grandmothers, and injecting drug users. It delivers integrated services to the community through various programs, which include building capacity and linking PLWHA to support groups and other institutions to help them build livelihoods and enhance positive living.
KICOSHEP’s project focused on an initial assessment process and development of a DCV intervention. Through a needs assessment process, finalized in January 2011, KICOSHEP determined that it could improve its services to affected persons and their caregivers living in Nairobi’s slum communities. They found a need for increased knowledge and skill in their provision of palliative care. In particular, KICOSHEP needed to engage the wider health care community to a much greater degree so that its clients would experience a greater sense of their own agency in dealing with the health and life issues of their loved ones. It also needed to promote and encourage greater solidarity among the KICOSHEP staff.
Altarum Team with Hospis Malaysia
Hospis Malaysia (Hospis) applied for and received a grant from Altarum Institute to conduct a demonstration of the application of Decent Care Values (DCV) in palliative care. Hospis is a palliative care organization based in Kuala Lumpur that features three key service components: home care, daycare, and teaching. In 2010, Hospis Malaysia served 1,650 patients who had an average length of stay of 3 months.
The demonstration project occurred in several phases, which included a needs assessment phase to understand individual needs, as well as barriers and facilitators to enhancing communication among patients, carers, and health care providers. Following the needs assessment, Hospis designed and implemented a DCV intervention. The program engaged stakeholders to develop organizational policies and implementation strategies based on the DCV.
The needs assessment process (documented in a March 2011 report) pointed to a gap in supportive services for informal caregivers (whom they refer to as ‘carers’). Hospis found a need for information for and attention focused on caregivers. Hospis then developed a guide designed to provide such information and supportive tools for caregivers; the intended outcome was that caregivers would experience a greater sense of their own agency in dealing with the health and life issues of their loved one, and experience a greater sense of solidarity with the Hospis staff.
Resources and Publications ↵
- Report: Decent Care Values: A Demonstration in Palliative Care
Final report from the Altarum Institute led research and demonstration project of Decent Care Values, an innovative, values-based model aimed at transforming and improving health care at three levels - individual, social, and systemic - and seeking to bridge human rights principles with the practice of medicine to improve health care.
- News: Decent Care Values Add Patient Voices to Help Transform Global Health Care
Health care is in crisis worldwide, with millions suffering from life-limiting illness and disease. Many current health care models exclude the voices of those whom they serve, resulting in sub-optimal care and outcomes. To begin addressing this need, Altarum Institute led the first research and demonstration project of Decent Care Values, a unique model that constructs care based on affected people voicing what they need and want while living with disease and illness.
- Blog post: Health Care: Dignity is the Core of the Decent Care Values Approach
For the last few years, Altarum has been engaged in partnering with global palliative care providers to demonstrate the Decent Care Values through demonstration projects that explored the effect of Decent Care Values on actual palliative care services.
Technical Assistance and Tools
Altarum's approach to providing technical assistance is to combine tools, training, reflection, and dialogue with the site wanting to implement the Decent Care Values (DCV). Outlined here is the template for technical assistance used with our demonstration projects in Kenya and Malaysia:
Training Site Vists. Three formal site visits were conducted with Kibera Community Self-Help Program and two with Hospis Malaysia. The first site visit was conducted early in the process to provide training with leadership and providers from the organization, affected people and other stakeholders. Project leaders with expertise in DCV and palliative care developed and led the trainings.
Day 1: Organizational Self-Assessment and Tour of Facilities. Activities focused on learning more about the grantees’ work and infrastructure, and included on-site visits with staff to patient homes. The training team worked with the grantee project team to review its organizational self-assessment and how successfully it was applying DCV to patient, family, provider, community, and systems interactions.
Day 2: Key Stakeholder Training on DCV. The training focused on providing information on the DCV through didactic and interactive discussion groups. Both demonstration projects reached out to affected people and their carers and family, as well as to other key stakeholders on local and governmental levels, to attend the training. The training staff led a DCV session based on a module developed by Rev. Ted Karpf. The trainings included a facilitation of “narratives” around health care and values. This was followed by training on the background and description of DCV and how these support palliative care services and goals.
Day 3: Action Planning and Next Steps. The visits were concluded with a planning session with key staff, who developed an action plan for the next steps for the project to gather input from affected people, create an intervention, and develop evaluation tools. The goal of the action plans was to create interventions informed by the needs assessments to address gaps in the DCV.
Research Team and Advisors
Altarum Research Team: Altarum Institute Decent Care Values in Palliative Care Project Team
Jesse Milan, Jr., JD
Altarum, Co-Principal Investigator
Stephen Connor, PhD
Consultant, Co-Principal Investigator
Antigone Dempsey, MEd
Altarum Project Manager/
Technical Assistant Lead
Brad Smith, PhD
Altarum, Evaluation Lead
Janice Lynch Schuster, MFA
Altarum, Senior Advisor
Cathleen Crain, MA
LTG Associates, Inc.
Nathaniel Tashima, PhD
LTG Associates, Inc.
J. Todd Ferguson, MA, PhD
Decent Care Senior Advisor
Altarum Institute Decent Care Values in Palliative Care Project International Advisory Committee
The Reverend Cannon Ted Karpf, Boston University School of Theology
World Health Organization
The Diana, Princess of Wales Memorial Fund, London
World Health Organization
Dr. Cecilia Sepulveda
World Health Organization
Dr. Jean-Marie Dangou
World Health Organization/Africa
African Palliative Care Association
Dr. Ibtihal Fadhil
World Health Organization/Eastern Mediterranean
Professor Michael Silberman
Middle East Cancer Consortium
Dr. Massimo N Ghidinelli
World Health Organization/Western Pacific
Dr. Cynthia Goh
Asia Pacific Hospice Palliative Care Network
King’s College School of Medicine
Dr. John Palen
Abt Associates, Inc.
Social and Scientific Systems, Inc.
Dr. Anil Kumar Paleri
Institute of Palliative Medicine
Winnie Ssanyu Sseruma
Cambodian People living with HIV/AIDS Network