Public Perspectives and Preferences on End-of-life Care

Survey and Research Consultation

SURVEY OF OLDER PEOPLE ON END-OF-LIFE PERCEPTIONS AND PREFERENCES

The Public consultation with older consumers commenced in 2015 with a survey of members of the public aged 60 years and over, to understand their perceptions of end-of-life, care preferences, preferred place of death and attitides towards doctors predicting risk of death.

The goal was to identify current perceptions and potential points for interventions.

Objectives

a)      To characterise public perception of the use of the screening to predict risk of death based on clinical history and concerns and preferences about end-of-life care

b)      To gauge respondent’s reactions to potential news on short life expectancy and their wish to be involved in or removed from decision making

c)      To identify socio-demographic predictors of variation in perception and action on end-of-life issues

d)      To establish public uptake of advance care directives among the target group and stimulate debate about the appropriateness of family making end-of-life decisions on a patient’s behalf

The survey was completed in August 2015 including people in their own home, and residents of aged care facilitites. Analysis completed in 2016.

===>Manuscript accepted by the Australasian Journal on Ageing. In Press [2019]

Cardona M, Lewis E, Shanmugam S, Nicholson M, Williamson M, Hanly L, Hillman K. Dissonance on perceptions of end-of-life needs between healthcare providers and members of the public: quantitative cross-sectional surveys. Australasian Journal on Ageing 2019; 00:1–10.  https://www.ncbi.nlm.nih.gov/pubmed/30868725

 

PATIENT/FAMILY DECISION-MAKING AT THE END OF LIFE

A review of the literature has been completed of articles published between 1995 and 2015 to describe the range of decision support tools for end-of-life and examine their effectiveness.The quality criteria framework endorsed by the International Patient Decision Aids Standards (IPDAS) was used to assess suitability.

Out of 1,419 initial publications found, 17 met the eligibility criteria for review. Many tools did not provide prognostic information or cover patient values, and half were designed for self-administration, which we consider inappropriate. Genuine informed decision making cannot take place in view of these gaps.

===> Manuscript published in the Patient Education and Counseling journal. http://www.pec-journal.com/article/S0738-3991(16)30457-8/abstract 

 

PATIENT AND FAMILY PRIORITIES NEAR END OF LIFE

A qualitative consultation with 3 focus group discussions and 6 in-depth interviews.

===> Manuscript published  in Health Expectations, Jan 2019; Lewis E, Harrison R, Hanly L, Psirides A, Zammit A, McFarland K, Dawson A, Hillman K, Barr, Cardona M. End-of-life priorities of older adults with terminal illness: a qualitative consultation. DOI https://doi.org/10.111/hex.12860

 

PATIENT AND FAMILY PERCEPTIONS OF INAPPROPRIATE CARE

A rapid review of the literature to examine acceptability or evidence of consultation with patients before ICU admission.

===> Manuscript released as pre-print. Cardona M, Shanmugam S, Lewis ET, Psirides A, Anstey M, Hillman K. A rapid review of patient and family perspectives on inappropriateness of intensive care treatments at the end of life. MedRxv  https://www.medrxiv.org/content/10.1101/19007138v1

 

CONSUMER ADVISORY GROUP

http://www.theherald.com.au/story/4076980/bringing-death-talk-to-life/

http://www.theleader.com.au/story/4032411/report-finds-unnecessary-end-of-life-treatment-is-widespread/

In late 2015 we established a Consumer Advisory Group to undertake more detailed consultations and focus groups with members of the public.

Over two dozen people from all walks of life have joined and we would like to enrol more so we can have wider representation of the community.

INVITATION TO PARTICIPATE IN THE CONSUMER ADVISORY GROUP

ON IMPROVING END OF LIFE

What  is the Group composition?

We are inviting to our pool of consumer representative people who are, or give care to, older patients suffering from at least one chronic and life-limiting disease: advanced cancer or terminal lung or liver disease; stroke; chronic kidney disease; neurological degenerative disorders; dementia; etc.

Representatives can be patients, relatives, caregivers or aged care workers (community and nursing homes).

 What do we do?

Our group of academic researchers will benefit from consumer views on emotional, physical and financial perspectives derived from their experience after contact with the health system (or that of their relative/patient). The projects have been funded by a grant from the National Health and Medical Research Council of Australia.

 What Projects are researchers conducting?

Several qualitative projects about the end of life care received by older Australians will commence in 2016, mainly looking at patients’ perspectives on inappropriate care, unnecessary procedures, decision-making on when to cease active management, and timing of referral to palliative or comfort care.

Our collaborators have also trained our consumers at promoting end-of-life conversation in August every year, on Dying To Know Day.

http://www.thegroundswellproject.com/dyingtoknowday/

 

 What experience is required?

-First-hand experience of contact with the hospital system for own care or care of a terminal patient/relative aged 60 years or older

OR

-Living with or working for an advance chronically ill older person (aged 60 years and above) or experience participating in their end-of-life care in a caregiver’s capacity (not health professionals)

OR

-Previous experience in deciding whether to initiate or discontinue aggressive treatments for elderly acquaintance or relative

AND

-Willingness and ability to express opinions, tolerate diverse views, and participate in fair and open discussions without judgment or antagonism

 What is the meeting frequency?

Every 2nd or 3rd month. Different representatives will be invited according to need. Representatives can attend via teleconference or in person. The duration of each meeting is one-and-a-half hours.

 

 

Project team

Professor Ken Mark Hillman
Faculty of Medicine
Miss Ebony Lewis
Faculty of Medicine

Key contact

Faculty of Engineering