Monthly Archives: May 2016

Access to palliative care in the last year of life: who is still missing out?

This paper reports on a retrospective cohort study in Western Australia of persons with an underlying cause of death in 2009-10 from cancer, heart failure, renal failure, liver failure, COPD, Alzheimer’s disease, MND, Parkinson’s disease, Huntington’s disease and/or HIV/AIDS, that then compared the proportions of decedents receiving specialist palliative care with a 2000-02 cohort.  12,817 deaths (53.7% of all non-trauma and non-obstetric-related deaths) were included into the cohort: 56% from cancer, 4% from both cancer and non-cancer conditions, and 40% from non-cancer conditions.  Overall, 46.3% of decedents received community and/or hospital based specialist palliative care, a 3% increase on ten years earlier.

69% of decedents with cancer accessed palliative care in the last year of life compared with only 14% of decedents with non-cancer conditions, although this did represent a 6.1% increase for this group compared with ten years ago.  The median number of days under specialist palliative care was 25 days (IQR 8-75 days) but this varied greatly by the principal cause of death condition.  Compared to decedents with heart failure, increased odds of palliative care access were observed for decedents with cancer, renal failure or MND, and living in major cities, being female, having a partner and living in a private residence were associated with increased odds of access to specialist palliative care.

The authors conclude that there are encouraging signs that palliative care access is improving in rural and remote areas; note, overall, a small but significant increase in access to specialist palliative care services, specifically in patients dying with non-cancer conditions; but record that further work is needed to reach the goal of palliative care access for all who need it, regardless of diagnosis.

Lorna Rosenway, Katrina Spilsbury, Beverley A. McNamara and James B. Semmens, A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on?, BMC Palliative Care, 2016, 15:46, published online 10 May 2016, doi:10.1186/s12904-016-0119-2.

Note:  The datasets supporting the conclusions of this article are available from the corresponding author after relevant approval has been obtained.

Palliative care in people with Parkinson’s Disease – Irish guidelines released

University College Cork’s College of Medicine and Health has released new guidelines: Palliative Care in People with Parkinson’s disease:  Guidelines for professional healthcare workers on the assessment and management of palliative care needs in Parkinson’s disease and related Parkinsonian syndromes.  The guidelines were assembled by an advisory group of national and international experts with funding from the Irish Hospice Foundation.  You can download the guidelines here.

Building the palliative care evidence base

Last week, Anna Erskine, Cochrane Pain, Palliative and Supportive Care review group, wrote about their contribution to palliative care evidence.  The group’s systematic reviewer, Professor Philip Wiffen, noted that developing high quality evidence within palliative care has been challenging, due largely to a relatively low number of trials with small numbers of participants when compared to studies in acute and chronic pain.  The group has recently generated a database of studies in palliative care and has published over 250 reviews and protocols in the Cochrane Library, with palliative and supportive care titles making up 30% of the total portfolio.  You can read the complete article from the UK ehospice here.

Government responds to Senate Committee Report on Palliative Care in Australia

On 23 November 2011 the Senate referred consideration of palliative care provision in Australia to the Senate Community Affairs References Committee. The Committee tabled the Palliative Care in Australia Report on 10 October 2012. The Report included 38 recommendations. On 6 May 2016, the Australian Government response to the report was tabled and can be accessed here.  There is no indication in the response as to why it took more than three and a half years for the response to be finalised.  There are no associated media releases on either the Ministerial or Departmental media sites.

Decision Assist launches palliative care app

Launched on International Nurses Day last week, the palliAGEDnurse app has been designed for nurses caring for older people with palliative care needs in residential aged care, community care and general practice .  The app highlights a care framework built around three care processes – advance care planning, palliative care cases conferences and a care plan for the dying person.  The online-offline capacity means the nurse and updated GP apps can be used anywhere in Australia.  They are available for download from the iTunes App Store and from the Play Store for Android. 

Here’s how you will probably die

We are in no doubt that this headline in The Age online last Friday would have driven up the click rate on the story.  What readers got was a short video (2:16) from the Groundswell Project, “10 things to know about dying”, together with an article and a range of interactive graphs and charts from Inga Ting (byline Data journalist) that unpacked the latest data from the Australian Institute of Health and Welfare.  You can access the story and explore the embedded resources here.

Coping with Mortality


The Conversation this week has been running a series of articles looking at our fear of death across the ages and how to cope with the dying process. 

Monday, “Fear of death underlies most of our phobias”, explores a social psychological theory, terror management theory, which suggests we manage our fear of death by creating a sense of permanence and meaning in life.
Tuesday “Adults can help children cope with death by understanding how they process it” examines the importance of having age-appropriate dialogue with children about death.
Wednesday, “Everything dies and it’s best we learn to live with that” psychologist, James Kirby, discusses current approaches to treating death anxiety.
Thursday, “Spiritual care at the end of life can add purpose and help maintain identity”, argues for spiritual care to be provided in aged care settings.

Act, engage, apply

Online public consultation on National Strategic Framework for Chronic Conditions

The Australian Health Ministers’ Advisory Council (AHMAC) is auspicing the development of a National Strategic Framework for Chronic Conditions.  The framework will provide guidance for the development and implementation of policies, strategies, actions and services to address chronic conditions and improve health outcomes, and will supersede the National Chronic Disease Strategy 2005.  Online public consultation on a second draft Framework is now open and can be accessed here, with submissions closing on 22 June 2016.  Further information about the Framework and consultation process is available here.



The Moral Compass: “A Good Exit – Who Decides”

Last Sunday Compass on ABC TV discussed end-of-life choices with  Andrew Denton; Professor Colleen Cartwright, Professor Frank Brennan, Leslie Cannold, and palliative care physician Linda Sheahan. You can watch or download the program and a transcript here.

Futility and utility in end-of-life care

In the editorial in the May 2 issue of the MJA, Ian Maddocks suggests that ‘utility’ may be a more appropriate approach than ‘futility’ when assessing further management in end-of-life care. ‘Futility’ is an absolute term – an intervention is either futile or it is not – and a futile treatment should be suspended. ‘Utility’ is not an absolute – it assesses usefulness over a range of applications and opportunities, allows for an intervention that may assist one aspect of care but not another, and has the benefit of positive intent, relating to what can or will be done rather than what should be avoided.

The editorial is related to a paper that examines the use of the terms ‘futility’ and ‘futile treatment’ by 96 specialists and trainees from 16 end-of-life related specialties in three large Brisbane teaching hospitals.  The authors note that futile treatment has commonly been understood in two senses: firstly, the likelihood that treatment will confer patient benefit is unacceptably low (quantitative futility); and secondly, the quality of the resulting patient benefit is unacceptably low (qualitative futility).  From their interviews, they distilled the following definition: ‘Futile treatment is treatment that has only a very low chance of achieving meaningful benefit for the patient in terms of improving quality of life, sufficiently prolonging life of acceptable quality, or bringing benefits that outweigh the burdens of treatment’.

Despite a broad conceptual consensus about what futility means, the doctors noted variability in how the concept was applied in their clinical decision making.  Over half the doctors also identified treatment that is futile but nevertheless justified, such as short term treatment that benefits the patient or the family in non-clinical ways, although the authors suggest that rather than using the internally contradictory term ‘justifiable futile treatment’, this might be better rendered as ‘appropriate treatment, all things considered’.  They conclude that determining patient benefit requires discussing with patients and their families their values and goals as well as the burdens and benefits of future treatment.

Ian Maddocks, Futility and utility, MJA, Vol. 204, No. 8, 2May 2016.