Aged Care Research Projects
Advance Directives
An advance directive, otherwise known as a living will, or (in South Australia) an anticipatory direction, is a legally binding document which is created to record a person’s wishes for refusal of treatment in case that individual is unable to make a decision at the appropriate time.
It is meant to enable the patient to record his or her wishes about what medical care and treatment is wanted, or not wanted, should decisions need to be made about these things towards the end of life and that person is no longer able to communicate those wishes.
Some Australian hospitals (for example Melbourne’s Austin Hospital, Adelaide’s Queen Elizabeth Hospital) are implementing ‘advanced care planning programs’ which promote the creation of advance directives, and other end-of-life mechanisms such as enduring power of attorney, which allows a nominated person to make decisions on behalf of an incompetent patient. An American program that inspired the Australian version reported an increase in advance directives and and appointment of medical power of attorney from 4% of patients to 96% of patients over a period of two years.
When an elderly person is admitted to a nursing home or a residential aged care facility, this is often a crisis point in their life and they or their family may suddenly feel it is urgent to make a record of the person’s wishes. Sometimes staff in the facility may be required to assist or to witness these documents. Other times the staff may be involved in locating and trying to use an advance directive when the elderly resident can no longer make decisions.
Advance directives are immediately and intuitively appealing to many people. They seem to easily solve a difficult problem. Yet their use has been limited prior to the creation of these advanced care planning programs. It is well worth investigating the practical, theoretical, and moral basis and the outcomes of advance directives, before they become a common feature of end-of-life care in South Australian institutions.
We propose a project to examine the ethical implications of advance directives and advance care planning programs, with a particular focus on their use in aged care. This project will consist of:
1. A thorough review of the available literature and
research
2. The creation of a survey tool based on the findings of the literature
review
3. Application of this survey tool to a relevant sample of Southern Cross
Care employees, to establish their immediate and practical concerns and
responses, and to cross-reference these with the issues raised by the
literature review.
4. Identifying problems that are directly related to advanced directives
and advanced care planning programs.
5. An analysis of these problems with respect to the ethical principles
of Southern Cross Care.
6. A response to advance care planning programs in general, or proposals
for overcoming potential dangers in existing programs.
Paid carers: what might be the realistic and ethical expectations in a relationship where the carer is paid?
Residential aged care involves the residents, and paid carers employed by a third party. These caring relationships, between the resident and the paid carer, are unique for many reasons. For example the resident and their family have particular expectations of the facility and the carer, and the provider must meet standards imposed by the resident, the family, and external organisations. The provider must also operate efficiently and consistently. So boundaries and clear expectations are very important, and, as in all caring relationships, the well-being of the carer is tied up with the well-being of the resident.
Unfortunately almost all research on carers refers to unpaid and informal care in the home. Maybe it has been assumed that paid carers in residential facilities have a clear contractual role. But paid carers and their employers face a variety of problems, including (but not limited to) residents’ aggression and violence, resistance to care, issues related to restraint, staff “burnout”, cost-benefit trade-offs, and so on.
Talking simply about rights can be useful but is not a complete account of these situations. Many questions remain. For example: What are the obligations of the resident? What kind of care can we realistically expect of paid carers? How can aged care providers maximise the quality of such caring relationships, and achieve continuity of care, within the context of budgetary limitations?
SCBI will use ethical and philosophical analysis, qualitative interviews, and collection of empirical data to assist in the development of recommendations for appropriate and practical policies and guidelines for residential care.
Some other questions relating to the care of elderly
people are:
· Can the patient exist as an autonomous person without their carer?
· Separating the caregiver from the patient - autonomy versus community.
· Obligations and rights of carers
· Nurses and carers as advocates for their patients.
· The objectivity of care
· Blurring the burdens on the caregivers with the burdens on the
patients.
Dementia care
The incidence of dementia is rising in Australia, and this has direct and serious implications for health and residential services. Aged care providers are at the forefront of dealing with this epidemic. Southern Cross Care is now providing specialised accommodation and services for individuals suffering from dementia.
Dementia-specific care involves many ethical difficulties, including restraint, consent, decisions about cost versus benefit, and so forth.
We may be able to develop a project in consultation with, or in partnership with, Southern Cross Care and perhaps also Alzheimers Australia.
· What kind of restraint is ethical in aged care?
In what situations?
· What do the public and family members understand about restraint?
· How do carers and healthcare providers determine whether the
demented patient has given their consent to treatment or a
procedure? When is it necessary to find a surrogate decision maker?
· Matters of privacy: when should carers and relatives be able
to access patient information in cases of dementia?
· What are the ethical aspects of treatments to improve memory?
· How and why should facilities accepting and encourage the dementia
patient’s “alternative reality”? What about
“reorientation”?
· Should aggressive medical treatment take place for persons with
Alzheimer’s’ Disease?
· Surrogate decisionmaking
· Differing expectations, attitudes and desires of the sick versus
the healthy.
