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By: Aisha Langford, PhD, Deputy Editor
In our last newsletter, we asked three questions about your experiences making decisions for others. Below is a high level summary of what you said and some example responses.
What is the hardest health-related decision you had to make for someone else?
Not surprisingly, many people reported that they had to make hard decisions for their parents and children. These decisions included withdrawal of life support and beginning hospice care. Other hard decisions centered around patients. Example answers included:
· Decision about driving for 93-year-old mother after a small stroke.
· Setting up a DNR [do-not-resuscitate] for parent with severe Alzheimer's.
· Moving my father to a nursing home.
· Ear surgery for my 4-year old daughter.
· Decisions related to my son being born 3 months premature.
· Whether or not to transfer a patient with end-stage dementia who could not swallow
and was becoming dehydrated to a hospital.
How, if at all, do we need to support parents, caregivers, and other surrogates differently with regard to MDM tools?
Example answers included:
· Decision support acknowledging the 'cruel' reality and providing information on
scenarios and possible (palliative) options.
· I do not believe that different criteria should be applied depending on the relationship
with the patient or that it is the patient themselves who requests advice.
· Emotional, existential, spiritual, and religious components of decision-making should
receive additional attention.
· With the amount of Medicare plans for the elderly, the Part D plan is dynamic and
changes during the year, which puts patients at risk for high drug costs. We need a tool
that will inform patients on the most optimal plans that will reduce their costs and
prepare them for potential shifts in the Part D formulary
Has your MDM knowledge helped or hindered you in your role as a surrogate decision maker?
Most members said that their MDM knowledge has helped them. However, not everyone felt that way:
· A bit of both. It has helped to weigh options and set priorities (both for my elderly
parents/in-laws and self), but I struggle with communicating with empathy and allowing
myself to grieve. I also have become the go-to for friends and family on decision-
making information/strategy; sometimes that help isn't appreciated.
· Has not helped. The SMDM knowledge is too abstruse for use with family. Other family
members who need to be part of the decisions do not understand or relate to the
underlying assumptions, let alone the methods, of SMDM decision tools.
· It has made me aware that I am not doing a great job, but unclear about how to do a
better job.
Thank you for your time and participation.
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