merryn gott anzspm 2016 costs of care

The Cost of CaringMerryn Gott

University of Auckland

I shouldn’t talk about money at a time like

this….

What I’m going to cover ….

#ANZSPM16

Sheffield/me

Gott et al, 2008

Providing care closer to home and preventing inappropriate hospital admissions is a current

NHS priority (DoH, 2006b). This study will explore the extent to which this is in line with

the views and preferences of older people with palliative care needs and will explore the economic impact of avoidable hospital

admissions within an end of life context.

High-quality community-based services cost no more, and can cost

less, than hospital-based care.(Department of Health, 2010)

What costs do families incur at

end of life?Extent of costs

‘There is a stunning lack of good data surrounding the costs for

palliative care’

(Hughes-Hallett T, Craft A, Davies C, et al. Creating a fair and transparent funding system; the final report of the palliative care funding review. The Palliative Care Funding Review, London, July 2011)

Gardiner, C., Brereton, L., Frey, R., Wilkinson-Meyers, L., & Gott, M. (2014). Exploring the financial impact of caring for family members receiving palliative and end-of-life care: a systematic review of the literature. Palliative Medicine, 28(5), 375-390.

Chai H, Guerriere DN, Zagorski B, et al. The magnitude, share and determinants of unpaid care costs for home based palliative care service provision in Toronto, Canada. Health Soc Care Community 2014; 22(1): 30–39.Dumont, S., Jacobs, P., Fassbender, K., Anderson, D., Turcotte, V., & Harel, F. (2009). Costs associated with resource utilization during the palliative phase of care: a Canadian perspective. Palliative Medicine, 23(8), 708-717.Dumont, S., Jacobs, P., Turcotte, V., Anderson, D., & Harel, F. (2010). The trajectory of palliative care costs over the last 5 months of life: a Canadian longitudinal study. Palliative Medicine.Dumont, S., Jacobs, P., Turcotte, V., Turcotte, S., & Johnston, G. (2015). Palliative care costs in Canada: a descriptive comparison of studies of urban and rural patients near end of life. Palliative Medicine, 0269216315583620.

One-fifth to one-third of the overall costs of caring for people at the end of life fall on

informal caregivers…….

Round, J., Jones, L., & Morris, S. (2015). Estimating the cost of caring for people with cancer at the end of life: A modelling study. Palliative Medicine, 0269216315595203.

‘The costs of family care in the United States may constitute twice that of nursing home care and more than six times that of formal

care’

Casey B. The value and costs of informal care. http://www2.warwick.ac.uk/fac/soc/ier/news/casey_-_dilnot_commission_evidence_-_ as_sent.pdf

‘In the UK, the economic value of the contribution made by carers is now

£132 billion per year’

Buckner L & Yeandle S. Valuing Carers 2015: The Rising Value of Carers Support. Carers UK . 2015

Estimated that family and whanau carers save the NZ health economy NZ$10.8 billion a year (5% of GDP) [1]

In Australia, the estimated replacement value of unpaid care provided in 2015 is $60.3 billion - over $1 billion per week, or 3.8% of Gross Domestic Product [2]

[1] http://www.carers.net.nz/blog/economic-value-and-impacts-family-caregiving-new-zealand[2] http://www.carersaustralia.com.au/about-carers/statistics/

Challenges in making the invisible visible

Photo Credit: Mesosyn.com

Gardiner, C., Brereton, L., Frey, R., Wilkinson-Meyers, L., & Gott, M. (2015). Approaches to capturing the financial cost of family care-giving within a palliative care context: a systematic review. Health & social care in the community.

What costs do families incur at

end of life?Nature of costs

@PalliativeMedJ #OA #HPM #ANZSPM#

Medications

Food

Phone Utility bills

Telephone

Home helpParking

Laundry

Internet Bed linen

Trips and outings

Shopping

ClothingCare for visitors

Home modifications

Equipment

Alternative/complementary therapy

Professional carers

Funeral/tangi costs

EmploymentImpact

on own health

Bed linen

Benefits

Direct

Indirect

Figure 1. Four dimensions influence financial costs of care.

Merryn Gott et al. Palliat Med 2015;29:518-528

Kai/Food

Artwork and Photograph by MARKUS REUGELS

What is the impact of these

costs?

To avoid parking costs, sisters Marie and Jodie took turns sitting in the car

whilst their mother was dying because they could not pay for

parking.

Jacinda and her partner ate their children’s leftovers because they could not afford their food bill.

Hone was caring for his wife, but also had a chronic condition himself.

He would only pick up half the medication he needed at a time

because he could not afford to pay for all of it in one go.

John sold his house because he had been unable to work whilst caring for

his wife and could no longer afford the mortgage.

Marie ‘maxed out’ her credit cards and was left with debts she could not

pay after her mother died.

Tom had to sell his house after his wife died and move into rented

accommodation with his two children.

Impact of gender norms on who incurs costs

I’ve got three older brothers, but I’m the only girl and, of course, being of Cook Island descent,

it’s family first.

Annie: I lost eleven years of my working life. I gave up a paid job to look after my husband. I have a heart condition now.Barbara: That’s part of being married. I mean, we bring up kids, too.Annie: Oh true, true.

How are these costs being

exacerbated in palliative care

practice, policy and research?

They don’t come out and give you a brochure and say, ‘Here you go, here’s an application form, fill it in and you’ll get some money’. No, you’ve got to ask so that can sometimes be extremely frustrating because you don’t know how you’re going to survive this financially.

http://palliativecare.org.au/wp-content/uploads/2016/05/PCA-Election-Statement-Final.pdf

http://www.leavenetwork.org/fileadmin/Leavenetwork/Annual_reviews/2012_annual_review.pdf

There are around 622,000 people in poverty in New Zealand, or one in seven households.

It's so important because how can society understand the needs if they're not researched so you can understand what we go through; how we survive in today's society when it comes to costs?

Gardiner et al, in press.

‘Informal and family care’ was identified as a key cost domain; however very few economic evaluations have included this perspective and there is limited methodological guidance which incorporates this viewpoint.

How we can all make a difference

m.gott@auckland.ac.nz@merryngott