Transcript T14 - Role of the Internet - Abby Parish.pps

www.Can-The-InternetHelp-Our-Inpatients.com
THE ROLE OF THE INTERNET IN FACILITATING
COMMUNICATION IN THE DYING PHASE
Abby Parish
FP1 Doctor in Palliative Medicine, YBN, Bridgend
Communication difficulties for
patients...

Multiple medical and psychological
causes

Also being physically removed from
society when an inpatient
The Problem
Case: Patient D
57 y old male with locally advanced
rectal cancer
 Acute admission in final weeks of life
 Bed bound (pain, open tumour)
 Discharge not possible
 Business man - main concern was being
able to tie up his business so he could
provide for his family

Patient Management
 Pain
control
 Wound management
 Supportive treatment
 How
to help him tie up his business
affairs…..
Background
Internet
Increasingly a part of everyday life
 Useful for a variety of purposes
 Could be used by anyone regardless of
age

Internet usage
Patients use of the internet
Information gathering
 Support
 Socialisation/blogging
 Purchasing aids
 Therapeutic outlet

Palliative Care Inpatients
Some will never leave hospital
 Others have relatives around the world
 They may seek information
 Others seek solace in strangers
 Some want to tie up business affairs
 Some may just want to buy a CD or a
pair of shoes

Survey
Aims

To look at the provision and use of the
internet for palliative care inpatients in
specialist palliative care units in Wales

Ultimately to find a solution for patient D
Method

Telephone survey of 17 Welsh inpatient
units
– Both adult & paediatric
– Both NHS and funded by charity
Results

5 units provide internet access
– All funded by charitable contributions

12 units had no internet provision
– In 3 units patients did access the internet
via mobile broadband and was self-funded
Results II
Managing business
affairs
Games
Contacting distant
Friends/relatives
How the
internet
was used
by patients
Email
Internet banking
Shopping
Blogging/social
networking
The Solution
Patient D

After information gathering across Wales, we
advised D to bring in his laptop and use
mobile internet

His business affairs were completed via the
internet plus telephone

In his final weeks of life, he enjoyed peace of
mind and quality time with his family
Summary
Benefits
Allows patient to socialise on their own
terms
 Information gathering
 Facilitates process of tying up affairs
 Allows communication with friends and
families who are away
 Promotes patient well-being

Disadvantages
Not everyone can use the internet
 Not all patients will be well enough to
use the internet
 Confidentiality (e.g. communal laptops)
 Accessing inaccurate information online
 Mobile broadband may
not be available in all areas

Suggestions

Internet access is easy to provide
– Broadband & wireless router (<£20/month)
– Patients own laptop & mobile internet (£0
to hospice)
– IT security may be an issue within a trust
Suggestions II

What to do with this information
– Bring it up at a national conference for
discussion!

Next step…
– Qualitative study
Finally….

Internet is an increasingly important form of
communication in everyday life

Handy way for patients to communicate with
loved ones and tie up outstanding affairs

Allows us to ‘offers a support system to help
patients live as actively as possible until
death’ (WHO)
References
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Bach, L.A. Blogging during terminal care: Communication, color schemes and
creating a community, Journal of Clinical Oncology, 2008: 26, p. 4504-4506
Farmer A.D., Bruckner Holt, C.E.M., Cook, M.J., & Hearing, S.D. Social
networking sites: a novel portal for communication, Postgraduate Medical
Journal, 2009: 85; p. 455-459
McKay, B. Internet resources for hospice and bereavement, Journal of Pain &
Palliative Care Pharmacotherapy, 2009: 23; p.141-144
Tan, L. Psychotherapy 2.0: MySpace blogging as self-therapy, American
Journal of Psychotherapy, 2008: 62; p. 143-163
Weiss, J.B. & Lorenzi, N.M. Online communication and Support for Cancer
patients: A Relationship-centric Design Framework, AMIA annual symposium of
procedures, 2005:799-803
Weiss,J.B. & Lorenzi, N.M. Challenges of social networking technologies for
cancer care and social support, AMIA annual symposium of procedures, 2007:
1151
Willis, L., Demiris, G., & Oliver, D.P. Internet use by hospice families and
providers: a review, Journal of medical systems: 31; p. 97-101
Thank you

Any questions or discussion points?