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5 Comments

  1. 1

    hptns

    A friend was involved a couple of years ago in a major study of palliative care. It struck her that a significant minority proportion of those dying at home, were doing so largely alone. Amongst other things, they craved attention from the researchers in order to create social contact. The issue of social contact loomed for them as large as issues such as pain management. The medical support system, however, seemed geared to paying large sums for them to be regularly re-hospitalised, or for professionals to visit, to in part, from the patients view, meet these social needs. It struck her that through the use of social media, including video, social interaction for those who were alone, could in many situations be organized more cost effectively and on a more timely basis.

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  2. 2

    carolinestorm@iinet.net.au

    Melissa Sweet, this may be of no use to you, but I ask you to consider those whose deaths are the most cruel; many of the the long-term seriously mentally, who having watched their lives disintegrate around them, knowing their diseases are intractable to treatment, (incurable diseases of the brain, schizophrenia, bipolar 1 disorder and some some severe affective disorders such as clinical depression) determine their own death, almost always violent and always alone. The WHO has said that the severely mentally ill complete 90% of suicides globally. Anyone who has lived with someone for many years, with such a degenerative disease causing suffering which never ends knows they would
    do anything to help that end. But, as my daughter said to me “If you helped me they’d get you for murder”. So, she went alone onto a train line, and we cannot ever recover fully.
    Please, consider incurable and degenerative mental illness as well as incurable physical illness when considering palliative care and physician-assisted death.

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  3. 3

    Carolyndv

    Glad to see this topic is included in the program! The potential for using social media to engage clinicians, patients, carers and govt is enormous. The conversations are already occurring, especially amongst patients and carers. A search of blogs will lead you down a very long path.u I follow one which continues to surprise me: the level of support and compassion, extremely honest commentary about dying, death and grief, swapping of information about disease, and even discussions about hope and the future. So much more than a phone call can provide! The use of social media to provide timely feedback to palliative care patients and their carers is an untapped resource. It’s not an expensive way to prevent people from admitting into ED about matters that could have been dealt with via a secure SM platform. The need to contribute to on line communities with correct information is also important and this is a role that healthcare professionals can add to.
    The global trend towards receiving information and communicating via portable technology opens up access to everyone: doctors need not be desk bound to consult with their patients, nurses can provide advice and support via micro blogging platforms, test results can be communicated quickly, psycho-social support in your pocket or tablet, and government and policy writers can have access to real thoughts, real experiences and a level of honesty about death and dying and the services provided via
    communities using social media. Education and feedback is just the tip of the iceberg!

    Reply

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