By Professor Peter Hudson (Australia)
The World Health Organisation advocates that palliative care should not only improve the quality of life for patients but also that of their families. Standards of care in numerous countries dictate that the family carers’ needs are assessed and addressed with relevant psychosocial supports made available.
Despite a mandate for health professionals to support family carers, in many instances such support is inadequate. Family carers’ psychological needs are frequently considered secondary to those of the patient or overlooked and there is neither consistency nor a systematic approach to assessing needs. Furthermore, carers are often not aware of available support, they usually have limited prior exposure to death and dying and feel excluded from information and care planning. The burden of providing such support is high, with up to 40 per cent of family careers suffering emotional distress. Without sufficient family career support many patients cannot be cared for at home. Furthermore, health professionals acknowledge that providing psychosocial support to family members as well as to patients presents an enormous challenge and they may not be resourced or have the required skills to provide such support.
To try to improve this situation researchers at the Centre for Palliative Care (St Vincent’s Hospital & Collaborative Centre of The University of Melbourne, Australia) have led the development and evaluation of a series of strategies which have been labeled “The Melbourne Family Support Program”. A summary of these initiatives has been published as an ‘open access’ article (available on line) in the British Medical Journal: supportive and palliative care (doi:10.1136/bmjspcare-2013-000500).
These strategies include:
These strategies have demonstrated improvements including careers’ sense of preparedness for their role; they reduced their unmet needs and there were lower levels of distress in bereaved family careers. In addition, the research team has also developed guidelines to help health professionals provide much needed support to family careers. A range of resources have also been developed to complement these initiatives. We hope these strategies can be used and adapted and evaluated to help family careers.
Peter Hudson, MD, is Director of the Centre for Palliative Care (St Vincent’s Hospital & Collaborative Centre of The University of Melbourne) and Professor of the University of Melbourne (Australia), and Professor of Palliative Care, Queens University (UK)
Dr. Hudson is a Member of the IAHPC Board. His bio may be found here.
By Dr. Yvonne Luxford (Australia)
Advance care planning is certainly not the exclusive province of palliative care, but it is an important tool within the sector. An advance care plan assists clinicians to tailor care to the wishes and needs of the patients, and relieves the burden of uninformed decision making from loved ones at a time which is already stressful.
Australian policy makers have been supportive of advance care planning with most of the eight states and territories having some form of legislation adding legal protection for both the patient and clinician. The Northern Territory is currently undertaking consultation around development of their own legislation, and New South Wales, which does not yet have specific laws, has recently released an action plan to ensure better implementation of advance care planning over the next five years. http://www.health.nsw.gov.au/patients/acp/Pages/acp-plan-2013-2018.aspx
Palliative Care Australia has been advocating strongly for consistency of legislation across the country. It seems a pity that the complexity of Federal/State relations could negatively affect the positive outcomes of having clearly understood and accepted laws that help deliver better patient centered care. This was also a strong recommendation of the Senate Inquiry into Palliative Care in Australia which reported last October.
Another recommendation both by Palliative Care Australia and the Senate Inquiry was for the inclusion of advance care plans within electronic health records. Australia is currently developing a Personally Controlled Electronic Health Record, and the Federal Minister for Health has recently announced significant levels of funding to ensure that advance care plans can be integrated. This in itself is a challenge – technicians would prefer the use of a single form, whereas the whole premise of advance care planning rests on individual choice, including recognition of requirements of different religious and cultural groups. There is also the dilemma of ensuring that the documentation can be updated as people’s wishes change.
A financial component of the aged care reforms Australia is undergoing funding for a telephone advice line focusing on advance care plans. This will be coupled with training packages to assist General Practitioners and aged care professionals to develop plans both in aged care facilities and in the community. In addition there are brochures and programs regarding advance care planning which receive government funding and support. Many can be accessed from http://www.palliativecare.org.au/AdvanceCarePlanning.aspx
So, you might think that with this clear commitment from government that having an advance care plan would be as common in Australia as saying G’Day!
I’m sorry to say that nothing could be further from the truth. Research released by Palliative Care Australia in May 2012 revealed that 87% of Australians do not have an advance care plan. Close to half the people who had recently lost a loved one who were part of follow up research undertaken this year recommended ensuring that your loved one has an advance care plan. The same study demonstrated that when a dying person’s wishes were known, their wishes were respected in nine out of ten cases. Clearly if we want our preferences, values and wishes to be respected, we need to have the conversation and engage in advance care planning.
The way to make this happen is to ensure that it is easy. We need to make sure that all health professionals, not just those in palliative care, understand the purpose and value of advance care planning. We also need to ensure that they either have proficiency in having the conversations, or that they know who to refer people to in order to facilitate the conversation. We need to make plans highly visible such as in electronic health records, but also clearly flagged in paper based records.
And we need to break down barriers about discussing death and dying. None of this will happen overnight, but we are working well towards getting the policy work right, we now need to focus on implementation.
Dr. Yvonne Luxford is the Chief Executive Officer, Palliative Care Australia (PCA)
Dr. Luxford is a Member of the IAHPC Board. Her bio may be found here.