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Towards a charter for Canadas Family Caregivers
Articles
Family caregivers unite!
Towards a charter for Canadas Family Caregivers
Dr Gordon Atherley
FamilycaregiversuniteArtcle.pdf
In a powerful argument for giving greater emphasis to caregiving in the training of physicians, Harvardmedical anthropology professor and physician Arthur Kleinman (2009) points to contrasting perspectives.
Caregiving, he writes, is understood by economists as a burden; by health-services researchers as a cost;by clinical psychologists as a coping process; and by physicians as a matter of clinical competency.
The perspectives change—or they should change—when the family caregiver is the deliverer of thecaregiving.
The notions of burden and healthcare cost are contradicted by a comprehensive body of robust knowledgethat positions family caregivers as private persons subsidizing the healthcare system wholly or partly bytheir own effort and expense.
The concept of a coping process fails the practical test of experience. Family caregivers are oftenindividuals who, while filling gaps in the healthcare system, struggle with the bureaucratic, political andeconomic forces of healthcare that Kleinman sees circumscribing the “physicians art”.
Drawing on his own experience as a family caregiver, Kleinman points out that, for many people, caregivingis a “foundational component of moral experience”. And also, the present writer argues, the way the familycaregiver is seen and respected is a foundational component of a nations fairness.
June 2009 saw the UK celebrate family caregivers with its Carers Week. There, family caregivers—partners,parents, children, siblings, friends and neighbours who look after a person with special needs—are recognizedas care providers essential to the healthcare system.
The UK pays family caregivers the equivalent of about $C400 per month for a 35-hour weekly minimum ofservices. It also supports them financially through close integration of pensions, social insurance andfamily income support. It provides them with practical help with their own needs as well as those of theperson they care for. It encourages them to liaise with the family physician to discuss changes in the healthof the person—or persons—they are caring for, and for care of their own health. It urges them take care ofthemselves.
Canada increasingly recognizes the importance of family caregivers; see for example Adalsteinn Brownspresentation, “The Day We Stop Caring” (2009). Canadian efforts in support of family caregivers are growing;see for example Ontarios Central East Local Health Integration Networks project, “Supporting CaregiverHealth and Well-Being” (2009). Canadas support of family caregivers nonetheless lags behind that of theUK.
Canada is experiencing the demographic challenge of the aging populations outpacing of birth rates.Provincial healthcare expenditures already approach half their total budgets. The dependency ratio (peopleabove 65 as a percentage of those below it) is now 20 percent and rising to a foreseeable crossover. Thelooming stimulus-related deficits of governments are expected to create pressures to curtail if not caphealthcare spending.
All of these and other trends press on Canadian public policy the urgent need to change the way familycaregivers are seen. Seeing family caregivers differently starts with the terminology of healthcare.
A common healthcare term is Client, one who is under the protection or patronage of another. In healthcareit describes a dependency relationship in which government, administrators, healthcare professionals andothers are positioned as organizers or providers of care for persons unequivocally positioned asrecipients.
The absence of the family caregiver from this dependency relationship is illuminated in the quotationattributed by Brown (2009) to Jane Jensen, Canadian Policy Research Network: “The responsibility ofcaregiving is a social one, with deep connections and dependencies with community, government andbusiness.”
For the family caregiver, the caregiving responsibility is the family caregivers, not that of someamorphous, abstraction notion of social responsibility. The community, government and business are, or shouldbe, helpers to the family caregiver.
The client relationship admits nothing of the role of family caregivers. It allows nothing of the ideathat one senior already burdened with some or other condition of aging is providing care for a partner who isonly marginally less well. It concedes nothing of the everyday reality that persons with special needscomprise all ages and embrace needs that lie outside as well as within healthcares scope. It reflectsnothing of the shifting emphasis in clinical care exemplified by Recommendation 28b of the Third CanadianConsensus Conference on the Diagnosis and Treatment of Dementia (2009) which called for “less relianceon promotion of patient self-management coupled with greater [family] caregiver involvement”.
Chronic disease management, another top-down term, derives from research and administration,where diseases are categorized for epidemiological and administrative purposes. For such purposes, a primarydiagnosis, such as ‘Type I Diabetic, is allocated. Other things that afflict the health and functioning ofthe person are labelled complications, such as ‘diabetic retinopathy, or they may be labelled comorbidities(meaning co-existent conditions) such as ‘dementia. But chronic disease management fails to adequatelyexpress the complications and comorbidities that compound the primary diagnosis and radically increase theburden on the family caregivers as the person loses (a) independence through blindness, (b) the ability forself-care and (c) the capability for self-management of the diabetes. Family caregivers should be seen asmore than managers of chronic disease.
As the persons health declines, complications and comorbidities parallel or even overshadow the primarydiagnosis. They require expansion of care which, for the best of outcomes, demands early detection. In thehome situation, the early signals of change are often detected by the family caregiver, who thus becomes animportant source of clinical observations.
The family caregiver is then positioned within the circle of care (the temporary organization ofhealthcare providers that forms around the person with special needs) as a provider of health-statusinformation to the primary care provider, usually the family physician. The positioning adds to the familycaregiver responsibilities of taking over self-care as well as organizing the functioning of the home notonly for the person with special needs, but also for the family caregiver and the family as a whole. Thefamily caregiver becomes the coordinator of care, the manager of appointments, the preventer of loneliness,and the maker of decisions even to the point of Power of Attorney.
The common, perhaps inevitable, progression of the primary disease, complications and comorbiditiescreates conditions and circumstances that require transitions from living at home to living with family, toassisted living, to long-term care. With each of the transitions, the responsibilities of the familycaregiver may change but they persist and even increase. In their analysis of Statistics Canadas 2007General Social Survey on Family, Social Support and Retirement, Cranswick and Dosman (2008) found that familycaregivers may continue to provide care to persons after a move into care facilities because they want tomaintain continuity, save costs or make up for staffing shortfalls in the care facilities.
The Canadian case for changing the way family caregivers are seen and supported is rooted in thefoundational component that is Canadas fairness. The Canadian Caregiver Coalition (2009) is guided byvarious values, which provide a starting point. As a minimum for fairness, family caregivers shouldreceive
1. Recognition for their
a. Financial and in-kind contributions to healthcare and to the economy, including redistribution fromgovernment to family caregivers through adjustments to taxation, pensions and other fiscal measures.
Closson (2009) reports that Ontario hospitals are achieving efficiencies through lower average inpatientlength of stay, fewer inpatient admissions, and using fewer staff hours of care for similar patients. Howmany of these efficiencies were achieved by transfer of the care load from the hospitals to familycaregivers, and how should this burden redistribution be fairly compensated for?
b. Role
i. as a member of the circle of care
ii. in the special but by no means rare instances that the family caregiver is also afrontline healthcare professional and thereby does double duty for the healthcare system.
a. Financial and in-kind contributions to healthcare and to the economy, including redistribution fromgovernment to family caregivers through adjustments to taxation, pensions and other fiscal measures.
Closson (2009) reports that Ontario hospitals are achieving efficiencies through lower average inpatientlength of stay, fewer inpatient admissions, and using fewer staff hours of care for similar patients. Howmany of these efficiencies were achieved by transfer of the care load from the hospitals to familycaregivers, and how should this burden redistribution be fairly compensated for?
b. Role
i. as a member of the circle of care
ii. in the special but by no means rare instances that the family caregiver is also afrontline healthcare professional and thereby does double duty for the healthcare system.
2. Respect for rights which they should be accorded
a. The right to know whats needed to be known by family caregivers in their particular circumstances aboutservices, supports and techniques for family caregiving, given that
i. too much of the healthcare information on the Web is confusing or evenquestionable
ii. uncertainty often clouds decisions about what constitutes appropriate use oftechnology in particular circumstances.
b. The right to protection, privacy and security given that persons with special needs, their familycaregivers and their families are particularly vulnerable i. to robbery and fraud resulting from identitytheft from electronic health record systems ii. violence and abuse from persons who gain access to theirhomes under false pretences.
c. The right to participate in decisions that affect them individually and collectively.
a. The right to know whats needed to be known by family caregivers in their particular circumstances aboutservices, supports and techniques for family caregiving, given that
i. too much of the healthcare information on the Web is confusing or evenquestionable
ii. uncertainty often clouds decisions about what constitutes appropriate use oftechnology in particular circumstances.
b. The right to protection, privacy and security given that persons with special needs, their familycaregivers and their families are particularly vulnerable i. to robbery and fraud resulting from identitytheft from electronic health record systems ii. violence and abuse from persons who gain access to theirhomes under false pretences.
c. The right to participate in decisions that affect them individually and collectively.
2. Relief relative to
a. stress (46 percent of family caregivers experience stress)
b. deterioration of the quality of life (15 percent of family caregivers describe their quality of life aspoor)
c. needs for help that family caregivers know they need, and not only help decreed by those who holdpatronage over the persons for whom they are providing care (61 percent of family caregivers say they needmore help)
d. their own care (19 percent were frail, disabled or needed care themselves).
a. stress (46 percent of family caregivers experience stress)
b. deterioration of the quality of life (15 percent of family caregivers describe their quality of life aspoor)
c. needs for help that family caregivers know they need, and not only help decreed by those who holdpatronage over the persons for whom they are providing care (61 percent of family caregivers say they needmore help)
d. their own care (19 percent were frail, disabled or needed care themselves).
The need for change in the way family caregivers are seen is so pressing that consideration should begiven to a Canadian Charter for Family Caregivers that spells out for governments, agencies, healthcareproviders and the public the recognition, respect and relief that family caregivers should receive insupporting not only their loved ones, but also in serving and saving Canadas healthcare system.
References
Brown, Adalsteinn (2009) The Day We Stop Caring http://www.longwoods.com/events.php?mode=past&selected=107&series=2008/09
Accessed 2009-07-10
Central East Local Health Integration Network (2009) http://www.centraleastlhin.on.ca/Page.aspx?id=9436 Accessed 2009-07-12
Closson, Tom (2009) The Five Most Important Ideas to Improve Ontario Healthcare http://www.longwoods.com/website/events/docs/BWTCTClossonJune22009.pdf
Cranswick, Kelly and Dosman, Donna (2008) Eldercare: What we know today Component of
StatisticsCanada Catalogue no. 11-008-X Canadian Social Trends
Accessed 2009-07-10
Kleinman, Arthur (2009) Healthcares Missing Care The Globe and Mail,
Saturday July 11, 2009 A15
The Canadian Caregiver Coalition (2009) Values http://www.ccc-ccan.ca/index.php Accessed2009-07-12
Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia http://www.cccdtd.ca/ Accessed 2009-07-12
* The population data is sourced from Brown (2009)