Presentation on theme: "Advanced Directives: Thinking and Talking About the Hard Stuff ~"— Presentation transcript:
1Advanced Directives:Thinking and Talking About the Hard Stuff ~
2People live longer, die differently In 1900, average longevity in US was 49.2 yearsIn 2010, was 78 years.Initial gain made through advent of sanitation, childhood immunizations.Since 1960, medical advances allowed lives to be prolonged. Procedures/surgeries, antibiotics, chemotherapy, heart/HTN medications, etc.People live longer, die differently
72004 No contagious disease causes in the top 3 causes 56% of top 3 causes mostly lifestyle diseases2004
8Is cancer a “lifestyle” disease? Sometimes cancer just happensOften lifestyle encourages developmentLung, bladder, kidney, stomach, esophageal, oral, lymphoma---smokingBreast ---overweight, lack of exercise, high fat diet, ETOH, HRTPancreas, stomach ---alcoholColon---low fiber, high fat dietIs cancer a “lifestyle” disease?
11The Dwindles --- a cascade of events Desk-exercise not a prioritySpent life watching football instead of playing footballSmoke, poor diet, become overweight or obeseKnees develop arthritis, ruptured back disk from wtNow can’t exercise if want toBecome DM, HTN, COPDStroke –paralyzed on one side. Can barely walk. Need spouse’s helpToo big to care for. Strain on familyStratolounger or bed becomes your worldDon’t forget the oxygenSmoking, DM, HTN, isolation---Alzheimer’sInactive---Pneumonia –hosp—ventilatorDM --Kidneys –dialysisStroke ---MCS---feeding tubeThree junctures enact AD.
12DO WE HAVE THE “RIGHT TO DIE?” Everyone born has a “right to life,” then what about a “right to die?”Should any law upholding a person’s right to life should inherently include their right to die?DO WE HAVE THE “RIGHT TO DIE?”
15Stopping ventilators When 21, overdose of ETOH and 2 Rx drugs Stopped breathing >15 minPersistent vegetative state, on ventilatorParents wanted removal , hospital foughtProtracted court proceedings, tube removedLived for almost another decadeStopping ventilators
16Two significant outcomes of her case development of formal ethics committees in hospitals, nursing homes and hospicesand the development of advance health directives
18After an automobile accident left her in a persistent vegetative state, her family petitioned in courts for three years, as far as the U.S. Supreme Court (Cruzan v. Director, Missouri Department of Health), to have her feeding tube removed.The Court initially denied the family's request, citing lack of evidence of Cruzan's wishes.Went to the U.S. Supreme Court“Right to die”
19Stopping feeding tubes The family's request was ultimately granted by providing additional evidence. On December 15, 1990, the tube was removed and she died 12 days later.The courts recognized for the first time a constitutional right to refuse treatment in extraordinary circumstances.Stopping feeding tubes
20The Birth of the Right to Die The Cruzan decision spurred considerable interest in "living wills" which clearly express an individuals desire to discontinue treatment or feeding in specified circumstances.The Birth of the Right to Die
24Legal Battles Extraordinaire Legal battle between her husband and the parents of Terri Schiavo that lasted from 1998 toLack of a living will caused a protracted series of appeals to determine what Terri’s wishes would have been re. life-prolonging procedures.Legal Battles Extraordinaire
25Keeping Terri alive became a focal point for the Right to Life movement MULTIPLE appeals, motions, hearings, etc.Florida legislatureFlorida governor BushFlorida and U.S. Supreme CourtCongressional RepublicansPresident BushSend in the ____
26At issue was whether the husband had the right to make decisions to At issue was whether the husband had the right to make decisions to . The highly publicized and prolonged series of legal challenges presented by the parents and by state and federal legislative intervention effected in total a seven-year delay before life support finally was terminated.What a mess!
27 the court finally found that Terri had made reliable oral declarations that she would have wanted the feeding tube removed, allowing her husband’s decision to terminate life support prevail.
28Patient self determination act of 1991 The Patient Self-Determination Act requires that healthcare institutions receiving Medicare or Medicaid reimbursement provide patients with written information about their legal rights to participate in medical decisions by completing an advance directive.An important goal of the Patient Self- Determination Act is to encourage patients to indicate their preferences for end-of-life care before the need arises, thus allowing healthcare providers to honor individual choices, improve the quality of dying and reduce stress for families and caregiversPatient self determination act of 1991
29Self-determination is derived from the principle that an adult has the right to decide what happens to his or her body. An advance directive documents the wish of a person to give directions about future medical care or to designate another person to make medical decisions if he or she loses decision-making capacity.The law also mandates that healthcare providers document the presence or absence of an advance directive in the patient’s medical record. A patient’s right to make decisions in an advance directive is protected by federal and state law.What the Law Intends
30Who has Advanced Directives? Only 14% of Americans have a written advance directive expressing their personal wishes for end-of-life care.This low percentage has significant implications for the aging U.S. population, as well as for younger adults who often don’t think about the need for an advance directive until they are confronted with a life-threatening terminal medical diagnosis.Living wills and other advance directives aren't just for older adults. Unexpected end-of-life situations can happen at any age, so it's important for all adults to have advance directives.
31Who needs AD? Answer: everyone over age >=18. Younger adults do not consider the need for AD,not considering death imminent. This age group known for risky behavior. Yet, main causes of death can lead to brain damage/death and an inability to make AD decisions.Leading causes of death for ages 15-25:Accidents, “unintentional injury”, MVAHomicidesuicideWho needs AD?
32People over age 65 whose heart stops outside the hospital setting have about a 2 percent chance of survival. Of those who survive, half will end up permanently in a nursing home. Only 1 percent will return home .Fully 50 percent of Medicare funds are exhausted caring for patients in the last 6 months of life.The sickest 1 percent utilize 30 percent of allocated Medicare funds while the top 10 percent consume 80 percent of those funds.While most Americans wish to die at home, 75% will die in a hospital or nursing home.The NUMBERS
33Healthy, robust 86 year old. Walked 6 miles a day, played tennis 3x/wk Hit by a car while jay walking.Initial injuries-femur (thigh) and ribs fracture, closed head injury, punctured lung.On ventilator. Had a stroke, went into kidney and liver failure. Developed pneumonia and placed on antibiotics. Had a reaction to antibiotics, turned bright red, and skin began to slough. Doctors considered dialysis.NO MPOA.Family could not agree to appropriate interventions.3 months; much agony, and $1,000,000 later, he finally died.My friend’s father
34ACUTE- sudden events that require immediate care decisions Massive strokeHeart attack with/without arrest, heart failureMVACOPD exacerbation/pneumoniaSepsis (massive infection)Traumatic brain injuryDefining events I
35CHRONIC---no sudden event, no clear line of delineation as when to stop interventions Dementia/Alzheimer’s Disease“global geriatric decline/debility”—weight loss, falls, frailty, loss of ability to performs Activities of Daily Living (ADLs) “the dwindles”Cancer, neurologic diseases, autoimmune diseasesChronic CHF, COPD, CADDefining events II
36Vegetative states: let’s add to the confusion A vegetative state is a rare condition, caused by brain damage, in which a person comes out of a coma and is fully awake but they have no sense of awareness.14,000 people per yearVegetative states: let’s add to the confusion
37a traumatic brain injury – caused by a severe head injury such as that sustained during a car accident or a fall from a great distancenon-traumatic brain injury – where the injury to the brain is caused by a health condition such as a stroke or Alzheimer's diseaseCauses
38Vegetative v.s. MCS 40 % diagnosed with Minimally Conscious State. there is a condition called "locked-in syndrome" where a person is fully aware but is unable to move any of their muscles, so they are unable to move or speak.Aphasia, spasticity, blind, deaf, epileptic, paralyzed, amnesicUnlike persistent vegetative state, patients with MCS have partial preservation of conscious awareness. Squeeze hands, follow objects on command. Consciousness often fluctuates.Rare, but occasionally awaken (to some degree).Vegetative v.s. MCS
39In a young person under the age of 20 who experiences traumatic brain damage, the chances of making a recovery are around 1 in 5.A person over the age of 40, who is an persistent vegetative state due to a non- traumatic brain damage, has an extremely small chance of making a recovery.People who do make a recovery are often likely to have life-long physical and mental disabilities resulting from the damage to their brain.“Recovery?”
40If you were in a MCS, what would you want? Both conditions require a feeding tube.If you were in a MCS, what would you want?
41What treatments would you want? How important to you is being independent and self-sufficient?What would make your life not worth living?Would you want treatment to extend life in any situation?Would you want treatment only if a cure is possible?Do you have a goal in mind that influences your decision about extending your life? (wedding, graduation).Would you want palliative care or hospice to ease pain and discomfort if you were terminally ill?What treatments would you want?
42Interventions I Resuscitation Ventilators Resuscitation. Restarts the heart when it has stopped beating (cardiac death). Determine if and when you would want to be resuscitated by cardiopulmonary resuscitation (CPR) or by a device that delivers an electric shock to stimulate the heart.Can lead to cardiac assist devices (balloon pump) and medications to maintain BP, kidney function.Mechanical ventilation. Takes over your breathing if you're unable to do so. Consider if, when and for how long you would want to be placed on a mechanical ventilator.Interventions I
43Interventions II Nutrition/hydration Dialysis Nutritional and hydration assistance. Supplies the body with nutrients and fluids intravenously or via a tube in the stomach. Decide if, when and for how long you would want to be fed in this manner.IV fluids-basic hydration“TPN”-IV protein, carbs, fats, fluidsGastrostomy tube- surgically placed tube for feeding directly into stomach.Dialysis. Removes waste from your blood and manages fluid levels if your kidneys no longer function. Determine if, when and for how long you would want to receive this treatment.Treatments 3x/wk for 4- 6 hrsInterventions II
44Interventions III Pericardial tap Paracentisis Thorocentesis Surgery ? comfort versus treatmentInterventions III
45Emergency care---do you wish to be hospitalized for further interventions? Antibiotics -– do you wish to be treated for a pneumonia or sepsis (blood poisoning)?Do you just wish to remain comfortable and in your own home in your last days?Is hospice or home-based Palliative Care a better choice ?Interventions IV
46Your most important asset is a trusted MD who can provide you with realistic choices/outcom e/expectationsMD role
47Example: COPD Can be treated, but not cured Will get worse over time Get pneumonia a lotRepeat hospitalizationsWearing oxygenDebilitating, reducing quality of lifeWhat’s it like to be intubated, air hungry?Example: COPD
48What are your goals? What are your thoughts about dying? Do you want to avoid pain at all costs or do you want to be awake/alert?What kind of quality of life is acceptable?What are your goals? Wedding/graduation?What are your goals?
49First, what exactly DO you want? Let’s start with choosingan MPOA.First, what exactly DO you want?
50Medical power of attorney (MPOA) aka “Healthcare Proxy” Medical or health care power of attorney (MPOA). The medical POA is a legal document that designates an individual — referred to as your health care agent or proxy — to make medical decisions for you in the event that you're unable to do so.It is different from a power of attorney authorizing someone to make financial transactions for you.Medical power of attorney (MPOA) aka “Healthcare Proxy”
51MPOA—your most important decision Trust is the most important element in choosing an MPOA . Feel free to say what you want and how you feel about End of Life issues.Prefer a committed, able MPOA who knows what it is to be an agent.It’s not about what the MPOA wants.MPOA—your most important decision
52Don’t chose someone out of a feeling of guilt or obligation. Choosing a person to act as your health care agent is possibly the most important part of your planning. You need to trust that this person has your interests at heart, understands your wishes and will act accordingly. He or she should also be mature and levelheaded, and comfortable with candid conversations. Good communication is essential!Don’t chose someone out of a feeling of guilt or obligation.Choosing an MPOA
53Your health care agent doesn't necessarily have to be a family member Your health care agent doesn't necessarily have to be a family member. You may want your health care decision maker to be different from the person you choose to handle your financial matters. It may be helpful, but it's not necessary, if the person lives in the same city or state as you do.Share your wishes with your family.Choosing an MPOA
54Who is an incapacitated adult? An adult “who is unable to effectively receive or evaluate information or both or make or communicate decisions to such an extent that the individual lacks the ability to satisfy essential requirements for physical health, safety, or self-care, even with appropriate and reasonably available technological assistance.Who is an incapacitated adult?
55Group of “interested parties” get together and choose one of the group to be a Proxy Decision Maker. Medical Healthcare Proxy form :Uh-Oh! No MPOA!
56Do not resuscitate (DNR) order Do not resuscitate (DNR) order. This is a request to not have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. Advance directives do not have to include a DNR order, and you don't have to have an advance directive to have a DNR order. Your doctor can put a DNR order in your medical chartIt is a legal, binding physician order. Does not expire.DNR
57Notifying your DNR status File of Life or envelopeon your fridgeID bracelet or necklaceDocumentation on your person?Tattoo?Notifying your DNR status
58In hospital setting-is honored as documentation readily available and can ID pt. Validity of DNR and identity of person need to be confirmed ~any ?~CPRThe reality of DNR
59Advantages:At home –paramedics often follow if documentation readily availableDeficits:Specific only to resuscitation effortsIn the field---rarely gets followed.DNR
60Living will. This written, legal document spells out the types of medical treatments and life- sustaining measures you want and don't want, such as mechanical breathing (respiration and ventilation), tube feeding or resuscitation in the event you are incapacitated.Not a physician order, rather a directive.A living will needs an MPOA to enact your wishesLiving Wills
61Living Wills Advantages: Short and sweet Gives specific time parametersCan be strictly interpreted but is mostly a guidefor MPOADeficits:Not very detailedNo DNRAlmost never happens—MPOA steps inLiving Wills
62Wish 1: The Person I Want to Make Care Decisions for Me When I Can't This section is an assignment of a health care agent (also called proxy, surrogate, representative or health care power of attorney). This person makes medical decisions on your behalf if you are unable to speak for yourself.Wish 2: The Kind of Medical Treatment I Want or Don't WantThis section is a living will—a definition of what life support treatment means to you, and when you would and would not want it.Wish 3: How Comfortable I Want to BeThis section addresses matters of comfort care— what type of pain management you would like, personal grooming and bathing instructions, and whether you would like to know about options for hospice care, among others..5 wishes
635 Wishes Wish 4: How I Want People to Treat Me This section speaks to personal matters, such as whether you would like to be at home, whether you would like someone to pray at your bedside, among others.Wish 5: What I Want My Loved Ones to KnowThis section deals with matters of forgiveness, how you wish to be remembered and final wishes regarding funeral or memorial plans.5 Wishes
645 Wishes Advantages: Comprehensive Contains place for MPOA designation DeficitsA bit longAs with Living Will—guide for MPOA$ agingwithdignity.org5 Wishes
65My Healthcare Decisions What do you want to know about your condition ?Strict adherence or interpretation?Where to die?Quality of life?Treatment optionsSpiritualityOrgan donationBody treatment after deathMy Healthcare Decisions
66My Healthcare Decisions Advantages:Can personalize and add narrativeComprehensiveAsks smart questionsDeficitsStill need to assign an MPOA separatelyDoes not contain a DNRMy Healthcare Decisions
67MOST FORM Does not need an MPOA consult and to enact. It is a legal, binding physician order.Covers resuscitation statusMedical interventions such as full, limited, and comfort measuresAntibioticsIV therapyTube feedingMOST FORM
68The MOST form Basically 4 parts DNR Level of medical interventions –level of airway managementAntibioticsArtificial nutritionThe MOST form
69MOST Advantages: MD order Comfort measures never optional More comprehensive than DNRDeficits:Not flexibleMOST
70All Advanced directives documents can be changed or rescinded at any time. Change your mind?
72Multiple choice questions Do you need aA. DNRB. Living WillC. 5 wishesD. MPOAE. MOSTF. All of the above ?Multiple choice questions
73What do you need? Most important—MPOA you trust! Do you want something definitive – DNR/MOST? (no MPOA needed)Do you want resuscitation then decision by your MPOA?Most EOL decisions will be madeby your MPOAWhat do you need?
74Issues that might come up Your MPOA chooses not to follow your wishesDisagreements within family and between the MPOA (MPOA has final decision)The 23 year old who sees his grandfather die on a ventilator and acts impulsively in completing a DNR or MOSTIssues that might come up
75Talking with your doctor Healthcare Affordability Act now allows for one free visit with your primary care physician to discuss AD.Once you've filled out the forms, give copies to your doctor, the person you've chosen as your health care agent and your family members. Keep another copy in a safe but accessible place. You might also want to keep a card in your wallet that says you have a living will and where it can be found.Talking with your doctor
76Barriers to Completing Advance Directives Patient and provider reluctanceTime constraintsAssumptions about treatment preferencesDenial and procrastinationUnrealistic expectationsDelaying until a crisisDiscomfort with palliative care planningLack of documentation of medical ordersCultural and health system barriersLack of knowledge about the Patient Self-Determination Act and advance directives among community members Source: Butterworth AM. Reality check: 10 barriers to advance planning. Nurs Pract. 2003;28(5):42-43Barriers
77 1.Even when patients have advance directives, they are often vague, incomplete, disregarded by family members or unacknowledged by caregivers.2.When family members can’t agree on what should be done.3. Hospitals and physicians often pursue the most aggressive treatment plan possible, even when the patient is close to death.4. Deciding to curtail treatment in critical care settings poses unique problems.5. Many patients and their families have had little or no experience with critical care before they face end-of-life care choices.6. It may be difficult to convince some families that the aim of withholding or withdrawing treatment is to alleviate suffering. “Intervention at all costs.”Other obstacles
78Durable Power of Attorney (DPOA) Through this type of advance directive, an individual executes legal documents that provide the power of attorney to others in the case of an incapacitating medical condition.The durable power of attorney allows an individual to make bank transactions, sign social security checks, apply for disability, or simply write checks to pay the utility bill while an individual is medically incapacitated.Durable Power of Attorney (DPOA)
79A word about Guardianship A guardian is a person or persons appointed by a court to assist with the personal affairs and make decisions on behalf of a minor or an adult who is incapacitated. A person under a guardianship is called a ward.Court orderedA word about Guardianship
81No Advanced Directives for medical/financial Small house in LongmontFilthy—never cleaned, fridge science experimentDogs --vetSignificant dementiaDrove –Kansas, Wyoming, BoulderGero-psych unitPlacementGuardianship by son
82A word about Conservatorship A conservator is a person, or persons, appointed by a court to manage finances and property for an adult who is incapacitated, and whose assets may be wasted or dissipated unless management is provided. (Usually there is dementia or emotional instability).CharitiesScamsUnscrupulous family membersPoor buying choicesA word about Conservatorship
83More about conservatorship Different than MPOA as this is after the fact and is court-ordered.More about conservatorship
85You can also specify in your advance directives any wishes you have about donating your organs, eyes and tissues for transplantation-sign up online in the Colorado Organ and Tissue Donor Registry at www.ColoradoDonorRegistry.orgIndicate your wishes on your driver’s license orstate ID when you apply for or renew it.Let your MPOA and family know your wishes. Desire to donate needs to be documented prior to death.Organ donation
87. If you wish to donate your body for scientific study: Colorado State Anatomical Board P.O. Box 6511, MS 8501 Aurora, CO 80045 Phone: URL: http://www.ucdenver.edu/academics/coll eges/medicalschool/departments/CellDevelop mentalBiology/anatomicalboard/Aboutus/Page s/default.aspx WHOLE BODY DONATION
88Website Resources Website Resources “Put It in Writing” — uses a Q and A format to help patients learn about types of advance directives and their importance. www.putitinwriting.orgPartnership for Caring — provides information about end-of-life options and how to document them. www.partnershipforcaring.orgAging with Dignity — publishes Five Wishes, a tool that helps patients consider their medical, personal, emotional and spiritual needs in planning end-of-life choices.www.agingwithdignity.org/5wishes.ht ml MOST form –State of Colorado- OST_Form_ pdfWebsite Resources
92The 5 Secrets What must we discover before we die? What do those at the end of their lives have to teach us?Why do some people find meaning and die happy?What does it mean to live a full and meaningful life?The 5 Secrets
93This is what they said…… Izzo asked 15,000 people to sent in names of wise elders1,000 responses receivedInterviewed 235 ‘wise elders’ agesThis is what they said……
94Be true to yourself –am I following my heart Be true to yourself –am I following my heart? Am I focused on things that really matter? Am I being the person I want to be?Leave no regrets –constantly asking—“ When I get old and ready to die will I regret the step I am about to make?’Become love—love yourself, treat others w kindnessThe Wisdom
95Live in the moment—every day, every moment is a gift Live in the moment—every day, every moment is a gift. Chose to be in the moment.Give more than you take---make the world a better place. Leave a legacy.