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Costs and Benefits of Caregiving Caregiving and Health Care Reform Creating Better Conditions for Care
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The Charlottetown Declaration on the Right to Care (2001) This Declaration was initiated during the National Think Tank on Gender and Unpaid Caregiving, held in Charlottetown in November 2001, led by the National Co-ordinating Group on Health Care Reform and Women, a group that crosses the Centres of Excellence for Women’s Health, and hosted by the Maritime Centre of Excellence for Women’s Health (now the Atlantic Centre of Excellence for Women’s Health) and the PEI Health Research Institute, of the University of Prince Edward Island. This article was prepared by Ann Pederson, British Columbia Centre of Excellence for Women’s Health and Patsy Beattie-Huggan, The Quaich Inc.
It was apparent throughout the National Think Tank on Gender and Unpaid Caregiving that taking action to improve the conditions of care was a common objective of the 55 participants. Experts from the academic, policy and caregiver communities drafted The Charlottetown Declaration on the Right to Care to suggest principles for a national home care strategy that would ensure equity for both women and men, and make home care an integral part of a publicly administered health care system. The Charlottetown Declaration
on the Right to Care The right to care requires: access to a continuum of appropriate, culturally sensitive services and supports; appropriate conditions; the choice to receive or not receive, or to provide or not provide unpaid care; that there is no assumption of unpaid care; access to reasonable alternatives and sufficient information. Care is: essential; an interdependent relationship; skilled work; multidimensional; diverse. Care should be: equitable; available; accessible; continuous; responsive; and transparent. Care should incorporate diversity and be participatory; enforceable; standards-based; be publicly administered; and respectful. These rights to care must be viewed through lenses that recognize the importance of gender analysis, diversity, interdependence between paid and unpaid care, and linkages among social, medical and economic programs. Understanding the Declaration The right to care requires access to a continuum of services and supports. Our public health care system began by financing hospitals and then moved on to pay for physicians. But the Hall Royal Commission (1964) that led to Medicare clearly understood an effective and efficient public system had to provide a full range of coordinated services and supports, including public home care.[1] The Commission asserted that only with a continuum of services would people receive care at the most appropriate level, move easily from one service to another and avoid costly duplication. Such a continuum does not currently exist. Caregivers and recipients also need supports such as training, care leave, job security and income programs. Such services and supports must be culturally sensitive. The right to care requires appropriate conditions. We know that health is determined by cultural, physical and social environments, social support, security, gender, economic and educational resources, and coping skills, as well as by biology, genetic makeup and health services. These all count in the provision of care, and some are even more important given the fragility of people who are ill or have a disability. Homes are not necessarily havens and hospitals can be dangerous to the health of patients and providers if conditions do not meet their particular needs or ignore the determinants of health. The right to care requires the choice to receive or not receive, or to provide or not to provide unpaid care. As the Prime Minister’s National Forum on Health (1997) reports, women "conscripted" into care end up in poor health and may be unable to provide adequate care.[2] Women who need care may not want to receive such care from relatives conscripted into service. At the same time, many who want to provide care may need help to do so (e.g., flexible hours at work, support from other family members), and both care providers and those receiving care may need help from government for financial assistance and health and social services. The right to care requires that there is no assumption of unpaid care. Care is not a choice if it is assumed families in general and women in particular are willing and able to provide care. The majority of women rely on income from paid work. The right to care requires access to reasonable alternatives and sufficient information. For many, but not all, the home may be the best place for care. For some, but not many, facilities may best serve their needs; such alternatives must be available to ensure appropriate and culturally sensitive care. Reliable, accessible information on the benefits of and problems with alternatives and on how to access them, as well as on how to give and receive care, is a necessary component of a public care system. To ensure the right to care, it must be understood that care is essential. We cannot leave people without necessary care. And care must also be understood as an interdependent relationship. It is not simply about what one person does to or for another: care involves reciprocity. Care is skilled work, requiring education, training and experience; it is not something women do naturally by virtue of being women. Care includes everything from feeding, injecting and hugging to bandaging, chatting and intubating. Care is diverse. People are different. Their cultures and experiences shape their needs and how those needs ought to be addressed. Care should be … equitable. Equitable does not mean the same care for everyone. It means a fair distribution of care based on appropriately assessed needs, and a fair distribution of care work. The Canada Health Act (1984) defines equitable care as care provided under "uniform terms and conditions." This principle should apply to home care. … Available. Public services must be provided within a reasonable distance without unreasonable delays. … Accessible. The Canada Health Act says that necessary services must be provided in a manner that "does not impede or preclude, either directly or indirectly" access to care. This includes user fees or other charges that can undermine the right to care. …Continuous. A smooth transition among services and a range of services, and continuity in care providers and services, is essential. …Responsive and Transparent. Care should respond to the particular needs of those giving and receiving care. People need to know how to access such services and how decisions about services are made. This includes decisions about what care is publicly provided and what is not. …Incorporate diversity. Responsive care recognizes cultural, regional, age and gender diversity, as well as differences related to sexual orientation, and socioeconomic and family status. Particular attention must be paid to traditional practices and activities of First Nations, Inuit and Métis peoples. …Participatory. Both those providing and those receiving care should be involved in decisions about how, when, where and by whom care is provided. The public should be part of determining how the system is organized and how care is delivered. …Enforceable. It is necessary to put mechanisms in place to ensure that the rights to care are protected. …Standards-based. Standards for care must be based on evidence about the effectiveness and the appropriateness of care. …Publicly administered. In terms of cost savings and coordination, there are clear benefits to a publicly administered health care system. It is also easier to hold such a system accountable. …Respectful. Respectful care recognizes that paid and unpaid caregivers and care recipients have individual preferences, abilities, feelings, experiences and histories. These rights to care must be viewed through lenses…: Lenses are analyses and methodologies that are able to recognize the importance of gender, diversity, interdependence between paid and unpaid care, and linkages among social, medical and economic programmes. The National Think Tank on Gender and Unpaid Caregiving was funded in part by the Government of Canada. The views expressed in The Charlottetown Declaration on the Right to Care do not necessarily represent the views of the Government of Canada or any of Canada’s provincial or territorial governments. For a full copy of the declaration visit http://www.womenandhealthcarereform.ca/ NOTES |
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