In response to MariJo's request, here's the full concept paper excerpted in my previous blog. Hope other friends will find it useful as well. Let me know if you would like to get in touch with the event organizers and/or some participants of that event, and I'll be happy to provide some contacts for you.
Decent Care Values in Palliative Care Services
WHO - Office of Partnerships, Geneva
In many ways palliative care transcends medicine
and is a reflection of the values of the community.
It is up to all of us to see that this vital humanitarian need is met.
. . . WHO Report on Palliative Care 2007
This paper is designed to frame the work that brings the practice of palliative care and the paradigm of decent care into conceptual alignment. Many involved in palliative care will recognize these values in their work, as will those involved with treatment advocacy and activism, and each will note the interrelationship between palliative care and their work. The presentation of decent care and its values presents the work of a global convening sponsored by the World Health Organization (WHO) and the Ford Foundation in 2006. The practice of palliative care is presented from the collected experience and perspective of the WHO.
The alignment of the relationship between decent care values, the work of treatment advocates and activists and the practice of palliative care is the challenge for the Global Consultation on Decent Care Values in Palliative Care Services in 2009. The purpose of this consultation is to bring together treatment advocates and activists, those needing care and the caregivers into a shared conversation, recognizing the decades of advocacy which has proceeded from both palliative caregivers and treatment activists.
Decent care describes caring particularly from within the experience of those living with HIV/AIDS, cancer and other diseases. There are multiple correlations between palliative care approaches and decent care, which are explored below. Fundamental to the best practices of both concepts of care delivery is the restoration of balance: in palliative care, the balance between being incurably ill and living as fully as possible; in decent care, in the restoration the balance of power between those receiving care and those providing care. At its center decent care can be summarized by three questions that the care recipient and caregiver might ask of themselves and of the health care system:
• What do I/we need now?
• How do I/we live in the face of disease?
• How might I/we flourish?
The answers may be that what we need most—in addition to excellent treatment, symptom management, and the array of what medicine can deliver—is our own agency, our own ability to assemble, direct and command the care and treatment that we need, and the needed support of the medical and health care community and institutions offering care to work to that end. This, of course, would include the agency of the larger community of family, friends, and colleagues as well as other community institutions organized to support care.
The notions of "decency" and "care" give life to the provision of ethical prevention, effective treatment and care services and collaborative support. Decent care also posits an approach to health services which is holistic (meaning comprehensive), inclusive and responsive to the community and which enrolls the community in the problem-solving and support for care.
Decent care reconciles the particular and the universal; the individual and the community; the haves and have-nots, such as health care professionals and those in their care. Decent care is based on the needs of real people, not on the needs of governments, agencies or systems.
Individuals treated decently experience their own agency, rather than empowerment (being given power by someone else). The concept of agency recognizes personal, moral, spiritual and physical authority and power which is not derived from others but is personal, authentic, informed by culture and tradition, and grounded in community. A person may seek out prevention, treatment and support services but should have a say in how such services are to be offered as well as which services are necessary. This is not only how we should care for those who are sick, but for those who are not; but also those who are at risk for infection or affliction by diseases such as cancer, HIV/AIDS, tuberculosis or hepatitis.
Palliative care (WHO, 2002a) is an approach that improves the quality of life of patients and their families facing the problems associated with incurable and life-threatening illnesses. This care prevents and relieves suffering by means of early identification, impeccable assessment, and prompt treatment of pain and other problems – physical, psychosocial and spiritual.
According to the WHO Guidelines (2002a) palliative care:
• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten nor to postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patient’s illness and in their own bereavement;
• uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy;
• includes the investigations needed to better understand and manage distressing clinical complications.
Decent Care Core Values
For those charged with developing health systems and providing health services, decent care implies a re-examination of assumptions – about what care is and how it should be practiced. Of key importance is that the people have to become full partners in designing and implementing their own care – and that professional and informal caregivers accept them in this role. This is the underlying premise of decent care.
Consistent with the WHO Palliative Care Guidelines, decent care facilitates a dialogue between those in care, the community and those organizations and agencies that provide prevention, care and support services. Decent care implies both (a) that the early diagnosis, prevention, care and support services designed, implemented, and provided by public health organizations and health services providers meet specific standards (i.e., “decency”); and (b) that the recipients of these services recognize the high standard (i.e., “decency”) of the services they are provided. In other words, decent care is both provider-oriented and recipient-oriented and respects the dignity of all persons in the health system. The values of agency and dignity are relevant regardless of the cultural context. Interdependence and solidarity focus on the relationship of individuals to their social context and the larger community of care to them. Sustainability and subsidiarity emphasize the need to consider the implications and needed considerations for long-term development of access to health and well-being for the world community. An exploration of the core values follows.
A. Dignity and Agency
The centerpiece of decent care is the dignity and agency of those receiving health care service. Unfortunately, a medical system built on the urgency to treat or the sheer shortage of those to do the treating has unintentionally denied the sick their dignity and agency, thereby denying them active roles in their own treatment, care, and support.
All humans regardless of race, income, social status, faith, gender, political beliefs, and sexual orientation, and whatsoever disease they suffer share the same trait – a common humanity. As expressed in the UN’s Universal Declaration of Human Rights, this common humanity is rooted in the innate value we all share as human beings: "recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world.” Recognizing the dignity of all persons in health care and respecting and protecting the value of each individual means including the individual and her/his community in designing and managing her/his own prevention and care processes.
However, if the agency of each person is also recognized and respected, then health care recipients should not be merely included or consulted in their care processes. As the focus and reason for care, it is imperative that people are recognized as having the agency (implicit) and voice (explicit) to construct and manage their own webs of care – that, in a fundamental way, they are the owners of their own diagnostic and prevention, treatment and care programs.
Within the paradigm of decent care, patients/clients are active agents in their care processes: they have direct control over, and direct input into, what care they receive and how they receive it. As the agents of control over their care, people are able to harmonize the specific care resources and services they receive – they are able to coordinate the specific elements of their care and treatment program and augment them with other services.
B. Interdependence and Solidarity
Of course, no one should have to face their diagnosis, their care and treatment, and the possibility of illness and death, alone. Yet the isolation of those to be cared for and their caregivers is prevalent in inflexible, overloaded, and under-resourced health systems throughout the world.
While individual members of the community must be at the center of the care process, they should be surrounded by family, friends, and the community they need and deserve to have, to support them in their care and treatment processes. The community in turn provides support and resources both to the affected persons and to one another.
Once people are recognized as active agents in the development and implementation of prevention, care and treatment programs, they are free to call on and utilize the wisdom, experience, and resources of those around them. Furthermore, as all humans share a common humanity, the same sense of dignity, we all share an interdependence that calls us to help and care for each other.
Decent care seeks to rebalance the power dynamic between those receiving care and those rendering care, including health services providers and staff. This fundamentally repositions the care recipient at the center of the care process and restores hope for the greater possibility of human – and community – flourishing. The very promise and activity of flourishing, of finding and creating meaning in life, contributes to well-being and thus to living a meaningful life – something essential to realizing and recognizing the dignity and agency of all human life. Decent care is built on the principle that all humans are active agents who should be at the center of their own care processes; it also recognizes that every human being – especially those who are ill or are in the final stages of their life – can, in their own capacity, flourish and live a dignified, meaningful life that is recognized and respected by others. Our capacity to flourish demands that we each direct our own health and the care that we receive. This is the underlying imperative of decent care. The enactment of decent care and the value of interdependence advantages not only the affected, their family and community, but also the clinicians who would serve them. By creating a web of care that is activated by the affected person, the clinicians are relieved of the singular burden and become actors in a larger and more far-reaching system of care.
C. Subsidiarity and Sustainability
Decent care begins by asking those who are ill a simple, yet essential, question: “What do you need?” By acknowledging and respecting the agency of those needing help and asking them what they need, decent care embraces and utilizes the value of subsidiarity. There are limits to the role of providers of health care. People closest to problems “on the ground”, who deal with these problems at the most fundamental level possible, are called upon to maintain effectiveness and efficiency. Subsidiarity is best promoted and protected by enabling actors on different levels to act collaboratively by their own agency.
As applied to health care, both stewardship and subsidiarity imply careful use of scarce resources. For the community this means that care processes are developed and implemented around (or directed by) those needing or receiving care – and those affected by the conditions of caregiving and support. All are consulted to ensure that the care and treatment a person receives meets, and is proportionate to, his or her needs.
This means that the individual collaborates directly with his or her community to design, develop, and change his or her care program (leveraging values of interdependence and solidarity), ensuring that the program itself is dynamic and responsive to the individual’s needs and desires. It also means that such “tailored” care programs not only respect (and respond to) the affected individual’s health needs but also respect her or his values and faith (leveraging values of dignity and agency) and can include faith-based resources as necessary.
Furthermore, as community-based FBOs/NGOs and health services programmes work directly with those needing care and their families to design care programs, these organizations will be better informed and equipped to request and solicit the resources they need from governmental agencies, international NGOs, and global health donors and philanthropies in order to be effective and sustainable.
The model of decent care not only enhances the sustainability of localized, community-based care and treatment programs but also enhances and buttresses the sustainability of the care programs. The value of subsidiarity places the sick and needy at the ground level of the entire care process, inverting the traditional and inflexible models of care where health systems are designed and treatment plans implemented before people are consulted and their needs, requests, and ideas are voiced and heard, A legitimate, community-approved care model has much greater potential for sustainability than a provider- or system-centered model.
Dimensions of Palliative Care Explored
Palliative care should be an integral part of comprehensive prevention, treatment, care and support services to whomever such services are needed. Palliative care is provided in the framework of a continuum of care from the time of diagnosis until the end of life. In order to ensure adequate population coverage, palliative care must be provided in health institutions as well as in home and community-based organizations (HCBOs). According to the WHO Guidelines for the Provision of Palliative Care:
• Ideally, palliative care services should be provided from the time of diagnosis of life-limiting illness, adapting to the increasing needs of patients and their families as the disease progresses into its terminal phase. Palliative care providers should also provide support to families in their bereavement.
• Effective palliative care services are integrated into the existing health system at all levels of care, especially community and home-based care. They involve the public and the private sector and are adapted to a specific cultural, social and economic setting.
• In order to respond to the needs in a community and make the best use of scarce resources, palliative care services should be strategically linked to prevention, early detection and treatment services for both adults and children. (WHO Palliative Care, 2007)
Palliative care, including symptom management, is applied as early as possible in the course of any chronic, life-limiting illness. Symptoms not treated at onset become very difficult to manage in the last days of life. For example, an individual does not “get used to” pain; rather, chronic unrelieved pain changes the status of the neural transmission of the pain message within the nervous system, with reinforcement of pain transmission, and activation of previously silent pathways. Control of symptoms throughout the course of illness has an impact not only on quality of life, but may also impact on length of life by influencing the course of disease. Palliative care is concerned with not only all aspects of the patient’s needs, but also the needs of the family and of the health care providers (WHO, 2002c).
The role of the hospice may extend beyond just the last few months of the patient’s life, to include the concept of long-term care. Bereavement care does not necessarily start at the time of the patient’s death, but actually earlier as the palliative care team prepares both the one who receives care and the family for the death of their loved one.
Good communication is the key to psychological support. Imparting information must be undertaken with honesty and openness in an atmosphere of sensitivity and compassion with adequate emotional support (Buckman, 1996). The level of information and pace at which it is given should be appropriate for an individual’s ability, needs and culture. Usually, patients want information on their illness (Simpson, 1991), but in many parts of the world, information with ominous portent is withheld from patients. While this practice is based on compassion and family concern, a “conspiracy of silence” and a “conspiracy of words” may add to a patient’s suffering.
Progressive acceptance by the patient of what is happening often occurs naturally and slowly in a truly supportive environment. Unless those living with fatal disease are enabled to unburden themselves and share their anxieties and fears, pain and other symptoms may become the intractable avenue through which psychosocial distress is expressed (Twycross, 1994). Although it may be impossible to offer hope of a cure, it is possible to offer pain relief, psychosocial support, improved quality of life and comfort in dying. However, as with pain management, there is need for specific training in communication skills (Faulkner, 1995).
Palliative care is not universally available. A 2006 report from the International Observatory on End of Life Care reported that although half of the 234 countries studied had established one or more palliative care services. Some 78 countries had no identifiable palliative care activities. The study also found a high correlation between palliative care and UN-defined levels of human development; a factor that considers a country’s development based on longevity, knowledge, and standard of living. The countries with the highest levels of human development (on the human development index) tended to have the highest levels of palliative care services. Among the 78 countries with no integrated palliative care services, only two are classified as being in the high human development level.
Alma Ata and Human Rights Approach to Palliative Care
A human rights approach to palliative care is founded upon the WHO definition of Health. When suffering is mitigated, a higher level of health can be maintained in the face of the incurable disease and death. With appropriate pain management, care and support, quality of life can be stabilized or improved, perhaps leading to the resumption of the normal functions of living and productivity.
At the International Conference on Primary Care held at Alma-Ata, USSR, participants affirmed in the Declaration “that health, which is a state of complete physical, mental and social wellbeing, and not merely the absence of disease or infirmity, is a fundamental human right and that the attainment of the highest possible level of health is a most important world-wide social goal whose realization requires the action of many other social and economic sectors in addition to the health sector."
The declaration subtly anticipated some of the challenges faced by those living with HIV/AIDS --for very soon after the conference, the disease was recognized. People infected or affected by HIV/AIDS came to understand their obligation to provide responsive care to members of their community. Participation in the planning, operation of their own health and health care, through real engagement with the health care system and health care providers, led PLHIV to seek out knowledge of their own disease and engage with others for mutual support and knowledge sharing. This is the reality of treatment activism.
Implicit in palliative care is the preservation of peoples’ right to have a place and a time of well-being, mentally and socially, regardless of physical well-being. Death, like other signficant human transitions (such as birth), is not something to be borne alone. No one should die alone, and no one should care alone, either.
With an estimated 100 million people needing palliative care annually, it is startling to realize that such services are so limited, when they are so badly needed. Likewise with 33 million living with HIV/AIDS it is essential that the conversation between affected communities and providers is needed for future planning and goal-setting. Decent care holds that effective planning and participation in such care services are best done in collaboration with the care providers and those in the systems, themselves. This consultation is a step in recognizing the learning and advocacy of all parties to the end that palliative care becomes the standard for care and that decent care values are recognized and upheld as crucial values for such care.
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Critical Documents on the Right to Health
The WHO Constitution
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Article 12 of the International Covenant on Economic and Social Rights (ICESR)
http://www.who.int/hhr/information/en/Series_2%20Domains%20of%20health%20responsiveness.pdf “Autonomy to participate in health-related decisions"
Health and Human Rights Working Paper Series No 2 The Domains of Health Responsiveness – A Human Rights Analysis