Flashcards in 29 - Death and Dying Deck (58):
What are the goals and objectives for this lecture?
Identify, define, describe, and/or recognize….
- Guiding principles governing physicians’ actions for end-of-life care [ethical principles]
- Concept of patient autonomy and its implications in caring for dying patients [changing role of autonomy]
- Guiding principles governing physicians’ actions for end of life care [patient rights]
Describe the current state of dying in America
Contrast this with the way people wish to die
Delineate barriers to excellence in EOL care
Describe death in the early 1900s
- average life expectancy 50 years
- childhood mortality high
- adults lived into their 60’s
How did Americans died in the past?
- Prior to antibiotics, people died quickly
--> infectious disease
- Medicine focused on caring, comfort
- Sick cared for at home
--> with cultural variations
Describe the statistics of death from 1996
- Infectious disease is much lower
- Heart disease
Describe the causes of death in the US in 2010
- Heat disease
- Chronic lower respiratory disease
- Flu and pneumonia
- Nephritis, nephrotic syndrome, nephrosis
- Intentional self-harm (suicide)
Describe medicine's shift of focus for death and dying
Science, technology, communication
Marked shift in values, focus of North American society
- “death denying”
- value productivity, youth, independence
- devalue age, family, interdependent caring
Describe the change in medicine's shift of focus in terms of potential for medical therapies to prolong life
- “fight aggressively” against illness, death
- prolong life at all cost
- “beat disease and thwart death”
What has increased the potential for longer lives?
- Improved sanitation, public health, antibiotics, other new therapies
- Increasing life expectancy
- 1995 avg. 76 yrs. (f: 79 yrs.; m: 73 yrs.)
- 2004 (life expectancy US at birth, 77.8 yrs)
Describe death as "the enemy"
- organizational promises
- sense of failure if patient not saved
In the media = 87% of CPR in progress patients survive
In real life =
When you go into an ICU in the US, what will you see?
- Unconscious patient
- Patient unable to make own decisions
- So ill they can't function
Yesterday's solutions are today's problems
- Yesterday's problem: patient dies from no oxygen
- Yesterday's solution: mechanical ventilation
- Today's problem: maintaining life on mechanical ventilation indefinitely
Describe the difference in life expectancy in the 1900s and now
1900s = 3 days to live with a chronic illness
Now = 2 years to live with a chronic illness
Describe modern health care
- only a few cures
- live much longer with chronic illness
- dying process also prolonged
What are the life-limiting disease trajectories of death
- Sudden Death, Unexpected Cause
- Protracted Life-Threatening Disease
--> Predictable, Steady Decline, Relatively Short “Terminal Phase”
- Slow Decline, Punctuated with Periodic Crises, Sudden Death
Describe sudden death of unexpected cause
- Approximately 10% of all deaths
- Unexpected, unpredictable death
- “Walking well” prior to sudden death
This is why we need an advanced directive at young age
Health status is good until the death event
Examples: MI, drowning, car accident, ruptured cerebral aneurysm
Describe protracted life threatening illness
- > 90% of deaths
- predictable steady decline with a relatively short “terminal” phase (cancer)
- slow decline punctuated by periodic crises (CHF, emphysema, Alzheimer’s type dementia)
Describe steady decline, short "terminal phase"
There is a short terminal phase
Example: pancreatic cancer, lung cancer
Describe slow decline, periodic crises followed by sudden death
Ups and down with the last up followed by a quick death
Example: CHF, COPD, Alzheimer's dementia
There is not one organ system that shuts down, they all shut down and there is a slower gradual progression to death
Describe the two roads to death (usual and difficult)
Usual road to death
- Sleepy, lethargic, obtunded
- Semi comatose, comatose, dead
Difficult road to death
- Restless, confused
- Tremulous, hallucinations, mumbling delirium, myoclonic jerks
- Semicomatose, comatose, dead
What are the physiological stages of dying?
Shock and Denial
- Not Me
- This can’t be true
- They must have mixed up the x-rays (lab results)!
- Why me?
- Anger, resentment, envy (of others who are not dying)
- It’s me, but if…..then I’ll….
- It’s me. What’s the use?
- It’s me and I accept it.
Describe the psychological stages of dying
- Stages do not necessarily follow linear pattern
- An individual may be experiencing more than one stage at a time
- Not everyone experiences all stages
--> Some, e.g., never get to acceptance
- Other “stagings” of dying exist
--> E.g., Kathleen Singh, The Grace in Dying (chaos, surrender, transcendence)
What are the different types of pain and suffering?
- Physical Pain
- Mental Anguish
- Spiritual Suffering
- Emotional Distress
Describe the pain and suffering in terms of fears, fantasy and worry
- Driven by experiences
- Media dramatization
Describe patients with multiple symptoms contributing to pain and suffering
- Inpatients averaged 13.5 symptoms
- Outpatients averaged 9.7 symptoms
Greater prevalence with AIDS
- primary illness
- adverse effects of medications, therapy
- intercurrent illness
Describe psychological distress associated with the end of life
- anxiety, depression, worry, fear, sadness, hopelessness, etc.
- 40% worry about “being a burden”
Describe social isolation as a form of pain and suffering
- Americans live alone, in couples
- Working; frail or ill
- Other family live far away or have lives of their own
- Friends have other obligations and priorities
What are the four ethical principles of death and dying?
Autos (self) and nomos (rule)
- Self governance
- Liberty rights
- Individual choice
- Being one’s own person
Loss of in the dying process
Describe competence vs capacity
Best understood as specific rather than global
What are the two meanings of informed consent?
- Autonomous authorization
- Institutional/policy rules of consent
Define decision making capacity
Implies the ability to understand and make own decision
- understand information
- use the information rationally
- appreciate the consequences
- come to a reasonable decision for him / herself
Describe decision making capacity
- Any physician can determine
- Capacity varies by decision
- Other cognitive abilities do not need to be intact
- Is not the same as competence (legal)
What do you do when a patient lacks capacity?
Sources of information
- written advance directives
- patient’s verbal statements
- patient’s general values and beliefs
- how patient lived his / her life
- best interest determinations
Who is involved in the "circle" of decision makers?
Self giving directions
- Advance directive
- Durable Power of Attorney for Health Care Affairs
- Who would know best what this person would want?
What are the coping strategies?
- Vary from person to person
- May become destructive (suicidal ideation,
premature death by PAS or euthanasia)
- Asking questions does not increase risk of suicide (Have you ever felt so bad that you thought about hurting yourself? Or hurting others?)
How can you determine the level of risk for suicide?
Level 1 = thought about it
Level 2 = have a plan
Level 3 = have the tools to carry out the plan
Describe the common place of death
- 90% of respondents to NHO Gallup survey want to die at home
- Most common place of death - institutions
Describe the trend of dying in institutions
- 1949 - 50% of deaths
- 1958 – 61% of deaths
- 1980 to present – 74%
- 57% hospitals
- 17% nursing homes
- 20% home
- 6% other
Is it necessary for so many patients to die in institutions?
- Majority of people dying in institutions could be cared for at home
- Death is the expected outcome
- Generalized lack of familiarity with dying process, death decreases this option
What are the patient's rights during terminal illness?
- Right to receive considerate and respectful care
- Right to receive information about the illness, treatment and likely outcome (in language he can understand)
- Right to receive care that involves informed consent
- Right to active participation in decisions regarding medical care, include the right to refuse any or all treatments
What fears to patients have with death?
- Die on a machine
- Die w/ pain & suffering
- Be a burden
- Die in institution
What are the desires that patients have about death?
- Die in comfort
- Die w/ family & friends close
- Die w/o “equipment”
- Die at home
What are the differences between the desires of the patient and the reality
LARGE gap exists between reality and patient desires
How do you correlate medicine with patient goals
What do you understand about your disease? (How sick are you?)
What do you hope for?
What is most important to you now?
What is the hardest part of this for you?
Figuring out their goals is the FIRST and MOST IMPORTANT step in making a treatment plan - Until then, you are just following your goals ***
What are some potential goals of care?
- Cure of disease
- Avoidance of premature death
- Maintenance or improvement in function
- Prolongation of life
- Relief of suffering
- Quality of life
- Staying in control
- A good death
- Support for families and loved ones
Describe the interrelationship of goals
- Historical sequencing
- Multiple goals often apply simultaneously
- Goals are often contradictory
- Certain goals may take priority over others
What are the treatment options at the end of life?
- Comfort care
- Limited medical care
- Life prolonging care
Describe comfort care
- Maximize pain and symptom relief, even if life is somewhat foreshortened
- Quality of Life>Quantity of Life
- Maximal comfort
- Minimal side effects
- Care in locus of choice
- Optimal pain management
Describe limited medical care
- Use of selected medical interventions, often while determining the balance between benefit and burden
- Measured treatment where both comfort and life prolonging modalities are included in treatment plan
- Hospitalization, antibiotics, but NO CPR, MV
Describe life prolonging care
- Maximize length of survival, even if some compromise of other values
- Quantity of Life> Quality of Life
- Maximal length of survival
- Mechanical Ventilation
Describe how goals may change near the end of life
- Some take precedence over others
- The shift in focus of care
--> Expected part of the continuum of medical care
What are examples of bad use of language in the end of life?
- Do you want us to do everything possible?
- Will you agree to discontinue care?
- It’s time we talk about pulling back
- I think we should stop aggressive therapy
- I’m going to make it so he won’t suffer
What language would you use to describe the goals of end of life care?
- I want to give the best care possible until the day you die
- We will concentrate on improving the quality of your life
- We want to help you live meaningfully in the time that you have
- I’ll do everything I can to help you maintain your independence
- I want to ensure that your father receives the kind of treatment he wants
- Your comfort and dignity will be my top priority
- I will focus my efforts on treating your symptoms
- Let’s discuss what we can do to fulfill your wish to stay at home
What goals should guide the care?
The PATIENT'S goals
What do you need to do in order to come up with the goals of treatment?
Assess priorities of the patient in order to develop initial plan of care
Review with any change in
- health status
- advancing illness
- setting of care
- treatment preferences
What should the priorities for determining care be based on?
- Clinical circumstances
- Information from all team members
- Intentional listening