Friday, May 29, 2015

End of life wishes

John is mildly cognitively impaired but is losing quality of life physically, though more lowly than I expected when I last wrote about it.  After always saying he didn't want to be kept alive on machines, now that death is closer he doesn't want to give up, he wants more treatment.  In an effort to understand what the choices are, I wrote out what I would want so that I can then ask the question how are his wishes different.  My thoughts are below:

Pam’s Definition of Quality of life:

Major components:

  •  The ability to interact socially with others in some way
  •  Recognizing family members
  • Getting pleasure from some food (able to swallow safely)
  • Being able to spend time outdoors or at least looking out a window
  • Being able to communicate my wants and needs and be understood
  • Being able to enjoy some way of taking in information (reading, internet, music, TV)
  • Being reasonably content or happy most of the time
  • Not having serious chronic pain

 Less crucial components:

  • Being able to live independently
  • Being able to read books or magazines or the equivalent
  • Being able to regularly contribute something new to conversations
  • Having empathy and the ability to help others
  • Having insight into my situation

When I have lost two or more of the less crucial components or one of the major ones, I don’t want CPR, surgery (unless extremely trivial), dialysis, chemotherapy or radiation, or medications or devices to prevent long-term disease (such as a pacemaker).  More generally, I do not want any treatment that would cause months of discomfort to extend my life or that would extend my life at the cost of significant cognitive decline or decline in mobility.  Even though I have avoided them in the past, once I am in cognitive decline I do want antidepressants and pain medication if needed, particularly if I am no longer in touch with my spirituality.  I want to be in a group home of some sort so I have social interaction.

When I am starting to lose or have lost two or more of the major components, I don’t want blood transfusions, artificial feeding or hydration or artificial ventilation.  I don’t want hospitalization for any reason except comfort and I don’t want treatment for heart disease, steroids for brain swelling, or antibiotics to treat infection.  Please don’t push me to eat or drink if I stop doing so.  If pain is causing me distress, I want it treated even if that treatment hastens my death.