Link to article: http://www.guardian.co.uk/society/2009/jan/09/patient-starves-nhs
Global health is kind of a new interest of mine since I returned from Mexico. I found this article pretty shocking.
The first excerpt, about Martin Ryan reminded me of some of the children I saw in Mexico with evident feeding tube needs. I spent time at two different schools, one facility which strongly advocated for fitting a child with feeding difficulties or significant weight loss with a feeding tube and teaching the family to care for it. The other school did not consider feeding tubes to be an option because they felt the staff at the school and the parents would not be able to care for them. At the hospital in the UK, I find it unbelievable that the healthcare team was unable to communicate his basic human need for nutrients.
The other idea that popped into my head while reading this article is the many barriers to proper healthcare for individuals with developmental disabilities. From the story, Emma's death appeared to be a result of her inability to communicate with the hospital staff. Perhaps hospitals should require passing a competency or training in communication strategies with non-verbal patients. This could benefit all patients in these settings with communication challenges.
I'd like to think the healthcare teams at the hospitals I have been in would do a better job, but I also believe this story is a reminder not to assume that someone else has already asked the questions you want to ask a patient or family. It is a reminder that as a member of a healthcare team, we can, and must, be advocates for our patients, particularly in situations when their needs are not being met.
Friday, January 16, 2009
Friday, January 2, 2009
Self-determination: A reponse to discussion on trainee listserve
A great topic to generate discussion! I have two thoughts...
Self-determination, to me, seems to be a gold standard which many programs and services strive to practice. Every person or group that strives to practice self-determination has their own interpretation of how it is truly defined. One party may see self-determination as synonomous with free-will; another may see it as providing choices and allowing "self-determination" amongst the choices. Ultimately self-determination is limited to how it is defined by those who strive (or claim) to practice it's principles.
The second is that self-determination is more than just giving choices; it is a process. Self-determination is an innate desire in all of us, starting when we are young rebelious teenagers. We learn soon after this desire develops that each choice we make has its own set consequences, positive or negative. It may be that some programs that promote self-determination for persons with disabilities are trying to protect them from making decisions that will result negative consequences. It's kind of like a parent saying, "Would you like your curfew to be 11:00 or midnight?" It misses the point; the teen wants no curfew and wants to be trusted to decide when it is time to come home. As the teen matures, he may negotiate small decisions such as curfew time. He learns from his good and not-so-good decisions and eventually, the teen outgrows curfews and comes to be in charge of his own life and his own choices. That may be the piece that is missing from programs that claim to promote self-determination; they never allow the self-determined person to test the waters and learn from mistakes. Perhaps they never come to the point where the self-determined person is truly in control of her own life and choices.
Perhaps it is too simple of an analogy, but I do believe each of us desires our own degree of self-determination.
Be sure to see the AUCD message board at http://www.aucd.org/mb/index.cfm?which=trainee for original message.
Self-determination, to me, seems to be a gold standard which many programs and services strive to practice. Every person or group that strives to practice self-determination has their own interpretation of how it is truly defined. One party may see self-determination as synonomous with free-will; another may see it as providing choices and allowing "self-determination" amongst the choices. Ultimately self-determination is limited to how it is defined by those who strive (or claim) to practice it's principles.
The second is that self-determination is more than just giving choices; it is a process. Self-determination is an innate desire in all of us, starting when we are young rebelious teenagers. We learn soon after this desire develops that each choice we make has its own set consequences, positive or negative. It may be that some programs that promote self-determination for persons with disabilities are trying to protect them from making decisions that will result negative consequences. It's kind of like a parent saying, "Would you like your curfew to be 11:00 or midnight?" It misses the point; the teen wants no curfew and wants to be trusted to decide when it is time to come home. As the teen matures, he may negotiate small decisions such as curfew time. He learns from his good and not-so-good decisions and eventually, the teen outgrows curfews and comes to be in charge of his own life and his own choices. That may be the piece that is missing from programs that claim to promote self-determination; they never allow the self-determined person to test the waters and learn from mistakes. Perhaps they never come to the point where the self-determined person is truly in control of her own life and choices.
Perhaps it is too simple of an analogy, but I do believe each of us desires our own degree of self-determination.
Be sure to see the AUCD message board at http://www.aucd.org/mb/index.cfm?which=trainee for original message.
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