Friday, June 17, 2011

course on bioethics

  • Decision-Making Capacity, Surrogates, and Advance (health) Directives.  6 months after the event that paralyzed accident victims, 90% feel their quality of life is good -- ironically the ones who require ventilation (mechanical assistance to breathe) felt better than those who could breathe on their own.
  • In working through a scenario to resolve conflict among parties, must keep in mind the patient's interest is foremost consideration, family's is second.   Whatever the suggested options to be described as "ethical", there must be a clear rationale based on some fundamental concept of ethics and justice, whether it is "truth-telling",  individual person (patient)'s autonomy and right to decide the fate of their own body (and life), benefit (to community; e.g. utilitarianism, or intrinsically, or according to the consequences of those options.
  • What are your goals ?  Go home?  Back to life as it was before?  Life regardless of comfort or dignity?  or comfort and dignity potentially at the cost of length of life ?  Question is sometimes framed as "why?"  - what's the rationale of the patient's desires?    Discovery of whether patient's decisions were made based on incorrect information, can only be accomplished by direct contact and conversation / investigation with patient, much of important background cannot be found in the paper trail.
  • Power, Trust, Money, Hope, Integrity -- all candidates for components that constitute medical futility after the obvious medical diagnosis.
"Hope is a state of mind independent of the state of the world.  If your heart's full of hope, you can be persistent when you can't be optimistic.  You can keep the faith, despite the evidence, knowing that only in so doing does the evidence have any chance of changing.  So, while I'm not optimistic, I'm always very hopeful."    -- Reverend William Sloane Coffin.
  •  "Which was, in fact, the greater cruelty?  Was it the one she avoided, which would have condemned Jerry to a protracted death in the intensive care unit, all blood and tubes, and pain?  Or was it the one she committed, sitting on Jerry's bed, holding his hand, and methodically erasing all the hope from his eager eyes?"
  • ** discover the hidden agendas, hidden values ** they are at least as important as the stated ones
  • look at the wider picture beyond what is being said - what's missing is as important as what's there
  • Veterans Admin  and in particular resources on 
  • refusal of (medical) treatment based on legal protections for privacy and against bodily intrusion
  • in reverse, provider cannot refuse requested treatment under anti-dumping statute (patient rights)
  • look at principle of "double effect" 
  • What are the questions to be asked relative to ethics once information is classified into the right categories ?
    • Facts
    • Beliefs
    • Ethics
    • Responsibilities
  • brain parts:  RAS reticular activating system
    • not awake, not aware
    • awake, not aware
    • awake, aware (start at one end of range, minimally conscious)
    • normal
  • unhelpful distinctions
    • artificial vs natural
    • ordinary vs extraordinary
    • killing vs letting die
    • withholding vs withdrawing
    • what is personhood ?  what counts as life ?
    • PVS vs MCS
  •  Paul Farmer reader, and a video
  • "health care markets do not compete on price and quality, they compete on risk and prestige"
  • how much $ are given to doctors by companies ? Look it up!
  • Evidence based prescribing, pharmaceutical innovation, and access to medicines (?!)
  • CSC = Crisis Standards of Care  see
    • Minnesota matrix, 
    • IoM (institute of medicine) report
  • Margaret Walker  quoted in
    "The orchestration of moral collaboration [required in ethics consultation] will be complex. Parties will share morally problematic situations but may have different senses of what is relevant and understandably different personal stakes. The ethicist has special responsibility to enliven a process in which these common moral concerns stay in focus while differences are recognized and, ideally, mediated.—Margaret Walker, 1993, p. 39"
  •  Rebecca Goldstein "The Mind-Body Problem"
  • "Mattering Map"  -- what are the significant items ?
  • How We Die
  •  <- videos provide more clear understanding of actual state of dementia, cancer, goals of care, cpr, heart failure,  create account to view the videos.

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