Catherine Mary Burns

Defining distinct caregiver subpopulations by intensity of end-of-life care provided

Interventions designed to assist informal caregivers who serve individuals at or near the end of life have predominantly focused on caregiving spouses. Can we define other caregiver subpopulations – by intensity of care provided – so as to enable better a) identification of caregiver needs and b) targeting of support to caregivers? The Health Omnibus Survey, an annual face-to-face survey in South Australia, collects health-related data from a representative sample of 4400 households. Piloted questions included in the 2001–2005 Health Omnibus surveys addressed death of a loved one, caregiving provided, impact of caregiving and caregiver characteristics. Of 18,224 respondents, 5302 reported a loved one’s death due to terminal illness in the previous 5 years. In all, 502 (10%) provided daily care [5–7 days/week], 619 (12%) provided intermittent care [2–4 days/week] and 425 (8%) provided rare care. Active (daily plus intermittent) caregivers, compared with non-active (rare) caregivers, were more often women (63% vs 50%; P < 0.0001). Daily caregivers were distinguishable from intermittent; daily caregivers were more often widowed (95% vs 7%; P < 0.0001) and ≥60 years (80% vs 64%; P < 0.0001); intermittent caregivers were more commonly children/parents (35%), other relatives (33%), or friends (26%; P < 0.0001) and were better educated, more active in paid work and wealthier. Financial burden, experience at time of death, ability to move on after the death and need for grief support also differed by intensity of caregiving. Caregiver subpopulations can be defined according to intensity of caregiving with distinct demographic features helping to distinguish them.

Suicides on farms in South Australia, 1997–2001

OBJECTIVE Despite much having been written, both nationally and internationally, about rural suicides, no one in Australia knows either the number of residents on farms or the suicide rate for this group of people. This paper seeks to determine the number of residents on farms in South Australia, along with the suicide rate. DESIGN, SETTING AND PARTICIPANTS A retrospective audit review of the files of suicides completed between the 1 January 1997 and 31 December 2001 was undertaken in the South Australian Coroners Office. There were 1033 cases examined for sociodemographic details and 380 files were explored in detail. RESULTS Estimating both the number of agricultural establishments in South Australia and the resident population on farms for 2001, and determining the number of suicides on farms between 1997 and 2001, the farm suicide rate was found to be 33.8 for men, 6.7 for women and 21.6 per 100,000 for persons, much higher than the rural suicide rate for South Australia in 2001 (23.8 for men, 5.6 for women and 14.5 per 100,000 for persons) according to the Australian Bureau of Statistics. CONCLUSIONS This study provides an estimate of the number of farm residents in South Australia in 2001, the number and rate of suicides on farms in South Australia in 2001, and shows that this rate is significantly higher than the overall rate of suicide in South Australia in 2001.

Caregivers for people with end-stage lung disease: characteristics and unmet needs in the whole population.

Introduction End-stage lung disease (ESLD) (predominantly caused by chronic obstructive pulmonary disease and restrictive lung disease) is a significant cause of death. Little is known about community care for people with ESLD especially in the period leading to death. This paper describes demographic characteristics of caregivers, and key characteristics of the deceased irrespective of specialist service utilization. Methods The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey conducted statewide. For the last eight years questions about end of life have been asked of 3000 respondents annually (participation rate 77.9%). Directly standardized to the whole population, this study describes people who cared for someone with ESLD until death. Results One third (6370/18267) had someone die in the last five years from a terminal illness, 644 from ESLD (3.5% of respondents; 10.2% of deaths). One in five (20.8%) provided physical care: 43 respondents provided day-to-day and 63 provided intermittent hands-on care for an average of 40.1 months (SD 56.9). Caregivers were on average 51.2 years old (range 17–85; SD 16.5) and one in five was a spouse. Additional support to provide physical care was an unmet need by 17% of caregivers. The deceased were an average of 73.9 years old (range 47–92; SD 10.4). Only 31.1% were assessed as ‘comfortable’ or ‘very comfortable’ in the last fortnight of life. Discussion Given the health consequences of caregiving, caregivers of people with ESLD would benefit from prospectively defining their needs given the time for which intense caregiving is provided.

Uncovering an invisible network of direct caregivers at the end of life: a population study

Background: Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends. Aim: This population study aims to define the people who actually provide care at the end of life. Setting/participants: A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and ‘expected’ death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence. Results: People of all ages indicated they provided ‘hands on’ care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer. Conclusion: This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on ‘next-of-kin’ status in research will not identify them.

‘Who Will Talk for Me?’ Next of Kin is not necessarily the preferred substitute decision maker: Findings from an Australian intensive care unit

Little research appears to have been undertaken to explore how a Substitute Decision Maker (SDM) is chosen by a patient and particularly for an incompetent adult in the intensive care unit (ICU). Outpatient-based studies in France, Iran and the United States reveal that the Next of Kin (NOK) is not the preferred SDM in 30%–50% of patients, and the SDM is often unaware of the patient’s wishes.1–3 Differing cultural practices and milieu are important considerations. The expectation for a paternalistic approach from physicians remains common for patients from some European, Asian and Middle Eastern backgrounds, and this can create challenges.1 Also, the principle of enduring power of attorney and guardianship is not recognised in some countries when a person lacks competency. Muslim culture is often impacted by Sharia law where a mother is not recognised as a child’s guardian and can only be assigned as guardian with her husband’s consent.2 This would have implications in western culture where respect for a patient’s autonomy is the guiding principle impacting a SDM’s role.

Financial burden of caring until the end of life

Data from South Australia suggest that carers for people with chronic and life-limiting illnesses leading to death are neither accessing theCentrelinkCarer Payment (currently

The public's response to the obesity epidemic in Australia: weight concerns and weight control practices of men and women

546.80 per fortnight) nor the Carer Allowance (currently

Fluctuating awareness of treatment goals among patients and their caregivers: a longitudinal study of a dynamic process

100.60 per fortnight). Given the prevalence, constancy and financial burden of caring, health professionals need to actively ensure that carers are aware of available financial resources. Carers of people with life-limiting illnesses (cancer, AIDS, end-stage organ failure and neurodegenerative diseases) take on an enormous role when someone close to themneeds care that extends from diagnosis through until death. Caring has health and social consequences for the carer, both during the role and after having relinquished it. The strongest predictor for community-based care at the end of life continues to be the presence of a carer. This care generates an imperceptible crescendo of responsibilities that often cannot be foreseen, especially the documented financial burden. To understand better the uptake of Centrelink resources available to carers through until the death of the care recipient, the investigators included questions on care and use of Centrelink resources in the random wholeof-population face-to-face survey, the South Australian Health Omnibus. The Omnibus, run annually since 1991, canvasses a range of researcher-initiated health and social issues with a large, representative section of the whole population. Data are directly standardized to the State’s population for age, gender, place of residence and socioeconomic status. Of the 2999 respondents (71% participation rate), 991 had someone close to them die in the last 5 years from an ‘expected’ death and 100 (3%) provided hands-on care for more than 5 days per week for amedian of 7.5 months (mean 22 months). Of the 100 hands-on carers identified, 24 reported that theyhad experiencedfinancial difficulties as a result of caregiving, but only six drew on Centrelink payments. Fourteen people either had to reduce work hours (8) or cease work altogether (6) as a result of caring. These data reflect that not even the non-means-tested and tax-freeCarerAllowance that can be paid for as long as the person is in the caring role was widely accessed despite all 100 carers being eligible. With financial burden identified by one in four people, it is concerning that the use of available financial help was so low. Every health professional needs to continually reassess the financial burden on carers and to ensure awareness and uptake of resources that are readily available to better support carers in their crucial roles.