From Palliative Care Australia Inc.
Australia recognises National Palliative Care Week at the end of May. This is a time to raise awareness of palliative care issues amongst the general public. The theme for 2011 was ‘Let’s Chat about Dying’ which provided an important opportunity to establish a real dialogue with the community. To this end, Palliative Care Australia surveyed the Australian public on their attitudes about palliative care, and what actions they had taken regarding advance care planning.
Our findings are revealing, and I suspect they might easily translate to other Western cultures. It would be fascinating to see similar surveys conducted worldwide in order to compare national and cultural viewpoints.
As advocates for palliative care, we often campaign from a starting position which espouses that the general public doesn’t have a good understanding of the meaning of the term, but we found that almost three quarters of Australians surveyed demonstrated a clear comprehension. Since only 2% of respondents’ confused euthanasia with palliative care, it’s misguided to generalise that people conflate these two terms.
Building on the ‘Let’s Chat about Dying’ theme, we were keen to discover if Australians were actually talking about the end of their lives and if they were sharing their wishes with their loved ones including advance care plans. Unfortunately, there were no surprises.
Only 15% of respondents had formally prepared any type of plan that detailed how they wanted the end stages of their lives to be handled. A few more had talked with their loved ones about where they preferred to die, and 75% had no discussion with the very people who needed to support their decisions.
Data regarding the location of the death in Australia closely mimics studies in other English speaking countries -- 60% of Australians die in hospitals, around 10% in hospices, and the remainder die at home or in an aged care facility. A real contrast was found between where people state that they would like to die and where they actually die (74% want to die at home) -- unless things change rapidly, they won’t die at home.
Surprisingly, a lot of Australians said that they had not given much thought to where they would prefer to die. Not surprising, the older the cohort the more likely they were to have considered this issue.
Of course, dying at home is not an outcome that best suits everyone. Whereas some families can warmly support a loved one dying at home, others find the prospect daunting for a variety of reasons. It is important that the feelings of all family members are recognised in making a decision about the location of death.
Whilst acknowledging this, more families might feel comfortable if they knew that there was real support available to help them during the time when a loved one is dying. We need to ensure that high quality palliative care can be delivered in the community so that people can die in the location of their choice, surrounded by the people they choose, and with their cultural beliefs respected.
And when it comes to chatting about dying? Don’t believe the mantra that people don’t want to face this. 61% of Australians confirmed that they simply don't discuss death and dying enough. The media encourages conversation about deaths that are tragic or steeped in celebrity. However, as advocates of palliative care, we need to ensure that this is not the only manner in which death is portrayed.
The community has delivered its message -- now we need to chat about dying. Let’s get the conversation started.
Dr Yvonne Luxford
Chief Executive Officer
Palliative Care Australia Incorporated
PO Box 24
Deakin West
ACT 2600
Dr. Luxford is a member of the Board of Directors of IAHPC – her biography may be found at the following link: http://www.hospicecare.com/Bio/luxford.htm .
Israel
Providing Culturally Sensitive Palliative Care in the Desert –
The Bedouin Mobile Palliative Care Unit
Prof. Pesach Shvartzman
The Negev is a desert region in southern Israel which is spread over half of the country's geographic area. The population consists of two major ethnic groups—Jewish and Bedouin. The Bedouin population of the Negev consists of 180,000 Muslims, half of whom live in six townships. The other half is dispersed in small temporary settlements with a small minority who still follow a semi-nomadic lifestyle without access to full medical services. Most of the houses in these rural temporary settlements are without running water, sewage, and electricity. Accessibility is quite difficult because there are neither paved roads nor any form of motorized public transportation.
Of the leading causes for deaths in Israel each year, cancer accounts for 17.9% in the Arab population and 25.3% in the Jewish population. The total mortality rate per 1000 population of Israeli Arabs is 3.2 in males and 2.6 in females. Thus, we expect approximately 900 deaths per year in the Bedouin population. We assume that about half of them will die of cancer or a chronic illness that could benefit from a palliative care service.
For patients with advanced illnesses towards the end of their disease trajectory, it was clear that they could not receive adequate treatment in their rural homestead. This observation was the rationale for the development of a new palliative home care program.
A mobile palliative care unit (MPCU) has been established, with the aims to deliver palliative care to terminal patients living in remote regions and to provide palliative care consultation services to the local primary care teams. The mobile unit consists of a core team of a nurse, a social worker, a physician, and a Bedouin driver-interpreter/translator.
The MPCU cares for about 30 patients at any given time. Because of the distances involved and the difficult terrain, the team uses a four-wheel-drive vehicle. The vehicle is fully equipped with medications, including commonly used formulations of opioids, and the means needed to deliver appropriate home palliative care, such as syringe drivers for delivery of medications subcutaneously, catheters, and more.
The first home visit is usually an assessment. Physical suffering is evaluated, and a detailed social assessment is made to identify available family, financial, and other resources. A rough psychological assessment is also made that looks at styles and availability of coping mechanisms. The main caregiver is identified. A detailed explanation is given on how the MPCU works and what can be expected. Finally, a preliminary treatment plan is developed with the family. The next follow-up visit is usually planned with the primary health care team from the local clinic, and the scope of therapy for both the primary health care team and the mobile unit is defined. Occasionally, as needed, home visits to patients are conducted “out of hours.” Much emphasis is placed on giving the patient and his family the feeling that they are not alone.
The mobile unit incorporates conventional “Western” medicine with traditional Bedouin and Muslim culture and traditions, thus providing a unique experience.
This is a summary of an original paper previously published by Dr. Shvartzman who was a co-author --
Singer Y, Rotem B, Alsana S, Shvartzman P. Providing Cultural-Sensitive Palliative Care in the Desert - The Experience, the Need, the Challenges, and the Solution. J Pain Sympt Manage 2009; 38(2):315-21.
Dr. Shvartzman is a member of the IAHPC Board. His biography may be found at http://www.hospicecare.com/Bio/shvartzman.htm .
Palliative Care in India – e-learning
E-grandround GR165 - 22 September 2011 - 18:15-19:00 CET
Expert: Dr Gayatri Palat , INCTR India, Hyderabad, India
Discussant: Dr Fraser Black, Victoria Hospice, Canada
The European School of Oncology (http://www.e-eso.net/home.do) in co-operation with Nature Reviews in Clinical Oncology and Clinical Reviews in Oncology Hematology hold a series of distance learning programs on the Internet, called “e-session”: e-grandrounds and e-oncoreviews. E-grandrounds are weekly sessions on hot-topics held every Thursday from 18.15 to 19.00 CET and are CME accredited by ACOE, AMA and ESMO-MORA program.
The topic for the e-grandround GR 165-22 Septemeber 2011 was ‘Palliative Care in India’. The e-session was conducted live by Dr Gayatri Palat in India. During the session which included a slide presentation of 25-30 minutes, the participants had the opportunity to submit text questions both before and during the webcast.
Questions were received by Dr Fraser Black in Canada after which he put them forward, along with his own, for discussion during a 15-20 minute question-and-answer segment in the webcast. The session was very interactive with questions coming from participants from different parts of the world.
The e-sessions are archived and available for further access and CME accreditation for the next 6-months at www.e-eso.net (registration to the website is required).
Both Drs Palat and Black are both members of the IAHPC Board and their biographyies are found at http://www.hospicecare.com/Bio/palat.htm and http://www.hospicecare.com/Bio/black.htm
