PG Training Trailer

3 Sessions

1. Is it time to die?
2. Decisions at the Ending of Life
3. Client Values and End of Life Decision Making

Session 1: Understanding Death and Ethics

Goals for Day one: 

• To understand how the healthcare world works
• To understand the time, place, and process of dying
• To identify the ethical issues raised in end of life decision making
• To discuss a framework for addressing these issues
• To describe hospice and palliative care

Death and Dying:

• End-of-life care includes:
  • Preparing for anticipated death
  • Managing final stages of a fatal condition
• Surrogates are being asked to make increasingly difficult treatment decisions about increasingly complicated medical options.
• Death is a natural transition, not a medical or personal failure.
• Death has changed from a quick infectious process to a prolonged dying from chronic disease.
• Prolonged dying may be worse than death itself.

Ethics...

• raises questions about how we should act and how we should live.
• asks us to justify who we are and how we behave.
• rarely blue or red; usually shades of purple.
• requires us to ask questions of ourselves and others…

End of Life Ethics…

• … asks questions about how we ought to act and how we should live.
  • “What standards determine if this action is right or wrong?”
  • “What character traits–compassion, fairness–are necessary to live a truly human life?”
• …aids us in knowing and doing what is right.

Answering these questions…

demands paying attention to values, both professional and personal, both our own and others’ (especially the dying person’s)

Dying persons must…

• be treated with respect and dignity even when they can no longer participate in decision making.
  • Treating patients with dignity and respect may involve decisions to limit or stop aggressive treatment; and, …

Death is a process…

• and different moral obligations exist at different times.
• Proposed ethical standard: 
  • Dying like living is a process and attending to the process of dying is a good in itself.

Session 2: Legal and Medical Aspects

Goals for Day two: 

To Understand:

• The California health care law and how it impacts health care decisions by conservators
• Some of the medical aspects of:
  •  CPR
  • Artificial Nutrition and Hydration
  • Shortness of breath
  • Suffering
• Brain failure, PVS, Brain Death

How & where do people die?

Protracted Life-Threatening Illness

• >90%
  • Predictable steady decline with a relatively short “terminal” phase 
    • Cancer
  • Slow decline punctuated by periodic crises
    • CHF, emphysema, Alzheimer’s type dementia

The majority of PG cases involve…

• Progressive Dementia ["Brain Failure"]
  • Which is considered a terminal illness.
• Plus a need for a decision regarding appropriate treatment

Death and Dying

• Death is a natural transition, not a medical or personal failure.
• Death has changed from a quick infectious process to a prolonged dying from chronic disease.
• Prolonged dying may be worse than death itself.

Session 3: Values and Decision-Making

Goals for Day three: 

• To describe the AHCD.
• To distinguish between ethics and values.
• To define and identify personal and professional values.
• To identify values that govern the conservator-conservatee relationship.
• To understand informed consent
• To apply values to difficult medical decisions.

What are Values?

• Values are inner dispositions or beliefs which actually guide our behavior.
  • central beliefs
  • determine how we will act
• Values and ethics are not the same thing. Ethics is concerned with how we should behave; values with how we do behave.

When values conflict…

• we have an ethical dilemma.
• Value conflicts:
  • safety with independence
  • personal with medical
  • religious with medical
  • legal with medical
  • personal with legal
  • conservator with conservatee, family, …
  • medical team with patient, hospital, …

Ethically Justifiable Decisions…

• are made in light of all that can be known about the conservatee’s values, preferences, and definition of well-being.
• protect client autonomy to the maximum extent possible.
• demonstrate respect through shared decision-making whenever and to whatever extent possible
• are timely.

When making decisions…

• Consider the values & wishes of the conservatee / ward
• Consider how your own values inform the decision
• Examine the goals of treatments
• Do not just focus on the interventions

Can wards/conservatees tell you…

• If they want prayer
• If they enjoy travel
• With whom they spend their time
• If controlling their bladder/bowels is important
• If they don’t want to be a burden
  • HELP: your way, 2004 www.help4srs.org

If Yes, then, you can…

• discern some of their values: 
  • Belonging
  • Cleanliness
  • Family
  • Friendship
  • Independence
  • Inner harmony
  • Security
  • Spirituality

• Using values along with ethical principles…

• Surrogates can make appropriate choices for the patient

• See the cases of Mrs. Doe & Mrs. Long for examples

Our Public Guardian’s comments:

• "Once we have ascertained values we have an obligation as surrogates to act ethically. This really gets us to where the “rubber hits the road.”
• My sense is that once we have been informed and educated on the physical aspects of the dying process and the inevitability of death; we, as conservators, must search our hearts and apply ethical principles to the end of life decisions.
• This is what I want to accomplish with these workshops.