Networks of Palliative Care

April 5th, 2006

I was listening to a radio 4 programme yesterday about Palliative care, something that unfortunately I do have a personal engagement with at the moment as my father-in-law is dying of cancer caused by Asbestosis.

Tony lives with us, and is supported by a loving family and a dedicated team of doctors, nurses, carers and MacMillan nurses. I cannot say Tony has not been supported.

However, on the radio 4 programme, the issue came up as to why Hospices were set up and why they function so very differently to the NHS. The programme also discussed issues around pain control and why it is such a problematic area to get right. I discussed this with Tony and a cancer nurse last night. She talked about each district having a network of resources, knowledge etc.,

And indeed google “Palliative care networks” and you get a whole list. The one I spotted and looked at was the Glasgow Palliative Care Information Network The site is very informative and comprehensive. And geographically focused.

This got me thinking about collaborative networks of Palliative care. Was there one? Could there be one? I reflected on the seminal paper by Yochai Benkler Coase’s Penguin or, Linux and the nature of the firm.

Benkler states his belief that Commons-based peer production is the third model of production, relying on decentalised information gathering and exchange. Benkler also believes that peer production provides the ability to self-identify for tasks or projects, and that in doing so leverages the most critical of values, human creativity.

Further costs of collaboration are low, whilst the quality of information outputed is high. Why? Beacuse the combined collaborative intelligence of the many is always going to be more powerful the combined intelligence of the few.

Then there are issues around motivation, why do we want to engage in peer co-creation? Honour, a desire to contribute to the public good, peer recognition, self-esteem, are but a few examples, and they are all deeply social.

In such a peer system, innovation can be incremental and asychronous, where different combinations of peers work to create value.

Kevin Kelly of Wired magazine once wrote

Peer-to-peer flows of information and communications, unleash involvement and interactivity at levels once thought unfashionable or impossible. It transforms reading into navigating and enlarges small actions into powerful forces. We have gone from spectator art to full blown participatory democracy.

I went in search of a Palliative network and found some research on a Dutch intiative Function of local networks in palliative care: a Dutch view.

In 1998 the Ministry of Health of The Netherlands started a 5-year stimulation program on palliative care by founding and funding six regional Centres for the Development of Palliative Care. These centers were structured around pivotal organizations such as university hospitals and comprehensive cancer centers. As part of the stimulation program a locoregional network model was introduced within each center for the Development of Palliative Care to integrate palliative care services in the Dutch health care system.

The results of this intiative

According to the vast majority of responders, the most important reason to install the networks was the lack of integration between the existing local health care services. The networks were initiated to stimulate mutual collaboration, improve accessibility to health care services and increase the quality of these services. The most important achievements obtained by the palliative care networks were: increase in personal contacts between colleagues in a region, improved engagement and collaboration between participating organizations, enhanced insight in the health care provisions, joined initiatives for the development of new care products, and organization of patient-tailored care. Important success factors for the networks were deemed: fruitful mutual contacts, regular funding and the collective development of care products. By logistic regression analyses, the collective development of new care products and the organization of case discussions between caregivers from different health care services turned out to be the most important predictors for success of the palliative care networks.
CONCLUSIONS: Projects that stimulate the communication between professionals appear to improve the mutual collaboration between individual participants and between the participating organizations, which consequently enhances the quality of palliative care.

So could there be a more integrated system of collaboration for palliative care, where the learnings and shared knowledge could be collated into a living resource for the medical profession as well as those suffering from Cancer?

In many ways, OhMyNews and the Boeing World Design Team are perfect examples of peer collaboration, with very different motivators and pyschological and social drivers, that have proven to be successful.

In his final paragraph Benkler states

Commons-based peer production presents a fascinating phenomonen that could allow us to tap substantially underutilised reserves of human creative effort. It is of central importance that we do not squelch peer production, but that we create the institutional conditions needed for it to flourish

In the preface to her book Improving Palliative Care for Cancer Kathleen Foley M.D. says

It is innately human to comfort and provide care to those suffering from cancer, oarticuarly, those close to death. Yet what seems self evident at an individual, personal level has, by and large, not guided policy at the level of institutions in this country (USA). There is no argument that Palliative care should be integrated into cancer care from diagnosis to death. But significant barriers ? attitudinal, behavourial, economic, educational, and legal ? still limit access to care for a large proportion of those dying from cancer, and in spite of tremendous scientific opportunities for medical progress against all the major symptoms associated with cancer and cancer death, public research institutions have not responded

Foley references a report from 1997 Approaching Death: Improving Care at the End of Life which identified significant gaps in knowledge and the sharing of information.

Surely a collaborative network which was open and could be fed by a range of institutions, experts and individuals, that looked holistically at how best to help the sufferer, medically, socially and spiritually to their inevitable death would be beneficial to all.

It is my personal belief that when bad things happen, one is compelled to look for the good in them, this for me provides some sense of hope, solace and optimism.

I would welcome any thoughts and or comments on whether such a network exists and or should exist.

How might it exist to bring additonal benefit to release and create knowledge in new and powerful ways?

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