End of Life: Planning and Care

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End of Life Planning and Care

• Terence Grewe, D.O.
• Corporate Medical Director
• Trinity Hospice, LLC

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Ethics in Long Term Care

• Ethical Principles
• Advanced Planning
• Withholding/ Withdrawing Therapy
• Medical Futility
• Physician Assisted Suicide
• Hospice and Palliative Medicine

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Ethical Principals

• Beneficence physicians are obligated act always
  in the patients best interest
• Nonmaleficence physicians are obligated to do no
  harm
• Autonomy patients have a right to make their own
  decisions
• Justice physicians should treat patients with
  similar conditions equally

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Decision-Making Capacity

• Patients ability to understand information
• To make decisions based on the information
• To communicate a choice

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Decision-Making Capacity

• May be temporarily compromised by
• Drugs
• Psychological disturbances
• Medical conditions
• Advancing disease
• Is not always the same as competence

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Determining Decision-Making Capacity

• Frequent observations by physicians, family,
  surrogates, and other health care professionals
• Asking the patient to paraphrase topics under
  discussion
• Psychiatric consultations
• Mental status tests (MMSE, etc.)

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Decision Making Capacity

• Patients should be considered to have
  decision-making capacity when in doubt
• When a patient lacks capacity, previously
  expressed wishes should be honored

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Decision Making Capacity

• Surrogate decision makers should attempt to make
  decisions based on what the patient would want as
  well as their best interest

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Advanced Planning

• Advanced Care Planning
• Advanced Directives
• Power of Attorney for Health Care
• Surrogates

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What is advance care planning? . . .

• Process of planning for future medical care
• Values and goals are explored, documented
• Determine proxy decision maker
• Professional, legal responsibility

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. . . What is advance care planning?

• Trust building
• Uncertainty reduced
• Helps to avoid confusion and conflict
• Permits peace of mind

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5 steps for successful advance care planning

• 1. Introduce the topic
• 2. Engage in structured discussions
• 3. Document patient preferences
• 4. Review, update
• 5. Apply directives when need arises

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Step 1 Introducethe topic

• Be straightforward and routine
• Determine patient familiarity
• Explain the process
• Determine comfort level
• Determine proxy

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Step 2 Engage is structured discussions

• Proxy decision maker(s) present
• Describe scenarios, options for care
• Elicit patients values, goals
• Use a worksheet
• Check for inconsistencies

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Role of the proxy

• Entrusted to speak for the patient
• Involved in the discussions
• Must be willing, able to take the proxy role

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Patient and proxy education

• Define key medical terms
• Explain benefits, burdens of treatments
• Life support may only be short-term
• Any intervention can be refused
• Recovery cannot always be predicted

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Elicit the patients values and goals

• Ask about past experiences
• Describe possible situations
• Write a letter

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Use a validated advisory document

• A number are available
• Easy to use
• Reduces chance for omissions
• Patients, proxy, family can take home

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Step 3 Document patient preferences

• Review advance directive
• Sign the documentation
• Enter into the medical record
• Recommend statutory documents
• Ensure portability

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Step 4 Review, update

• Follow up periodically
• Note major life events
• Discuss, document changes

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Step 5 Apply directives

• Determine applicability
• Read and interpret the advance directive
• Consult with the proxy
• Ethics committee for disagreements
• Carry out the treatment plan

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Common pitfalls

• Failure to plan
• Proxy absent for discussions
• Unclear patient preferences
• Focus too narrow
• Communicative patients are ignored
• Making assumptions

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Preparation for the last hours of life . . .

• Advance planning
• personal choices
• caregivers
• setting
• Loss, grief, coping strategies

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. . . Preparation for last hours of life

• Educating / training patients, families and
  caregivers
• communication
• tasks of caring
• what to expect
• physiologic changes, events
• symptom management

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Advance practical planning . . .

• Financial, legal affairs
• Final gifts
• bequests
• organ donation
• Autopsy

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. . . Advance practical planning

• Burial / cremation
• Funeral / memorial services
• Guardianship

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Choice of caregivers

• Be family first, caregivers only if comfortable
• everyone comfortable in the role
• seek permission
• change roles if stressed

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Choice of setting . . .

• Burdens, benefits weighed
• Permit family presence
• privacy
• intimacy

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. . .Choice of setting

• Minimize family burden
• risk to career, personal economics, health
• ghosts
• Alternate setting as backup

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Advanced Directives

• Allow patients to make decisions on health care
  issues while the still have capacity
• Become effective when the patient loses decision
  making capacity
• Living will documents that state the patients
  desires

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Durable Power of Attorney for Health Care

• Designates a person to act as an agent or proxy
  to make decisions on behalf of the patient
• In absence usually spouse, then adult children,
  parents, and siblings

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Withholding or Withdrawing Therapy

• Principles for withholding or withdrawing therapy
• Withholding or withdrawal of
• artificial feeding, hydration
• ventilation
• cardiopulmonary resuscitation

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Role of the physician . . .

• The physician helps the patient and family
• elucidate their own values
• decide about life-sustaining treatments
• dispel misconceptions
• Understand goals of care
• Facilitate decisions, reassess regularly

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. . . Role of the physician

• Discuss alternatives
• including palliative and hospice care
• Document preferences, medical orders
• Involve, inform other team members
• Assure comfort, nonabandonment

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Common concerns . . .

• Legally required to do everything?
• Is withdrawal, withholding euthanasia?
• Are you killing the patient when you remove a
  ventilator or treat pain?

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. . . Common concerns

• Can the treatment of symptoms constitute
  euthanasia?
• Is the use of substantial doses of opioids
  euthanasia?

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Life-sustaining treatments

• Resuscitation
• Elective intubation
• Surgery
• Dialysis
• Blood transfusions, blood products

• Diagnostic tests
• Artificial nutrition, hydration
• Antibiotics
• Other treatments
• Future hospital, ICU admissions

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8-step protocol to discuss treatment preferences
. . .

• 1. Be familiar with policies, statutes
• 2. Appropriate setting for the discussion
• 3. Ask the patient, family what they understand
• 4. Discuss general goals of care

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. . . 8-step protocol to discuss treatment
preferences

• 5. Establish context for the discussion
• 6. Discuss specific treatment preferences
• 7. Respond to emotions
• 8. Establish and implement the plan

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Aspects of informed consent

• Problem treatment would address
• What is involved in the treatment / procedure
• What is likely to happen if the patient decides
  not to have the treatment
• Treatment benefits
• Treatment burdens

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Example 1 Artifical feeding, hydration

• Difficult to discuss
• Food, water are symbols of caring
• PEG tubes and artificial hydration may actually
  induce suffering

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Review goals of care

• Establish overall goals of care
• Will artificial feeding, hydration help achieve
  these goals?

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Address misperceptions

• Cause of poor appetite, fatigue
• Relief of dry mouth
• Delirium
• Urine output

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Help family with need to give care

• Identify feelings, emotional needs
• Identify other ways to demonstrate caring
• teach the skills they need

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Normal dying

• Loss of appetite
• Decreased oral fluid intake
• Artificial food / fluids may make situation worse
• breathlessness
• edema
• ascites
• nausea / vomiting

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Example 2 Ventilator withdrawal

• Rare, challenging
• Ask for assistance
• Assess appropriateness of request
• Role in achieving overall goals of care

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Immediate extubation

• Remove the endotracheal tube after appropriate
  suctioning
• Give humidified air or oxygen to prevent the
  airway from drying
• Ethically sound practice

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Terminal weaning

• Rate, PEEP, oxygen levels are decreased first
• Over 3060 minutes or longer
• A Briggs T piece may be used in place of the
  ventilator
• Patients may then be extubated

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Ensure patient comfort

• Anticipate and prevent discomfort
• Have anxiolytics, opioids immediately available
• Titrate rapidly to comfort
• Be present to assess, reevaluate

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Prevent symptoms

• Breathlessness
• opioids
• Anxiety
• benzodiazepines

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Prepare the family . . .

• Describe the procedure
• Reassure that comfort is a primary concern
• Medication is available
• Patient may need to sleep to be comfortable

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Example 3 Cardiopulmonary resuscitation

• Establish general goals of care
• Use understandable language
• Avoid implying the impossible
• Ask about other life-prolonging therapies
• Affirm what you will be doing

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Write appropriate medical orders

• DNR
• DNI
• Do not transfer
• Others

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Medical Futility

• Patients / families may be invested in
  interventions
• Physicians / other professionals may be invested
  in interventions
• Any party may perceive futility

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Definitions of medical futility

• Wont achieve the patients goal
• Serves no legitimate goal of medical practice
• Ineffective more than 99 of the time
• Does not conform to accepted community standards

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Is this really a futility case?

• Unequivocal cases of medical futility are rare
• Miscommunication, value differences are more
  common
• Case resolution more important than definitions

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Conflict over treatment

• Unresolved conflicts lead to misery
• most can be resolved
• Try to resolve differences
• Support the patient / family
• Base decisions on
• informed consent, advance care planning, goals of
  care

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Differential diagnosis of futility situations

• Inappropriate surrogate
• Misunderstanding
• Personal factors
• Values conflict

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Surrogate selection

• Patients stated preference
• Legislated hierarchy
• Who is most likely to know what the patient would
  have wanted?
• Who is able to reflect the patients best
  interest?
• Does the surrogate have the cognitive ability to
  make decisions?

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Misunderstanding of diagnosis / prognosis

• Underlying causes
• How to assess
• How to respond

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Misunderstanding underlying causes . . .

• Doesnt know the diagnosis
• Too much jargon
• Different or conflicting information
• Previous overoptimistic prognosis
• Stressful environment

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. . . Misunderstanding underlying causes

• Sleep deprivation
• Emotional distress
• Psychologically unprepared
• Inadequate cognitive ability

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Misunderstanding how to respond . . .

• Choose a primary communicator
• Give information in
• small pieces
• multiple formats
• Use understandable language
• Frequent repetition may be required

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. . . Misunderstanding how to respond

• Assess understanding frequently
• Do not hedge to provide hope
• Encourage writing down questions
• Provide support
• Involve other health care professionals

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Personal factors

• Distrust
• Guilt
• Grief
• Intrafamily issues
• Secondary gain
• Physician / nurse

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Types of futility conflicts

• Disagreement over
• goals
• benefit

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Difference in values

• Religious
• Miracles
• Value of life

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A due process approach to futility . . .

• Earnest attempts in advance
• Joint decision making
• Negotiation of disagreements
• Involvement of an institutional committee

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. . . A due process approach to futility

• Transfer of care to another physician
• Transfer to another institution

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Euthanasia and Physician-Assisted Suicide

• Proponents stress patient autonomy and mercy
• Opponents claim harm to patients
• Patients request for PAS should signal a problem
  with the patients care
• Expert palliative care can eliminate the desire
  for PAS

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The legal and ethical debate . . .

• Principles
• obligation to relieve pain and suffering
• respect decisions to forgo life-sustaining
  treatment
• The ethical debate is ancient
• US Supreme Court recognized
• NO right to PAS

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. . . The legal and ethical debate

• The legal status of PAS can differ from state to
  state
• Oregon is the only state where PAS is legal (as
  of 1999)
• Supreme Court Justices supported
• right to palliative care

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6-step protocol to respond to requests . . .

• 1. Clarify the request
• 2. Assess the underlying causes of the request
• 3. Affirm your commitment to care for the patient

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. . . 6-step protocol to respond to requests

• 4. Address the root causes of the request
• 5. Educate the patient and discuss legal
  alternatives
• 6. Consult with colleagues

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Hospice and Palliative Medicine

• When cure is not possible, treatment goals change
• From prolonging life to controlling symptoms
• Emphasis on advanced planning and ongoing care
  rather than crisis intervention

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Palliative Treatments

• Enhance comfort
• Improve quality of life
• Relieve symptoms and suffering
• Includes medicines, therapies and sometimes
  radiation, surgery, etc. To improve quality of
  life

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End of Life Issues

• Recognize life-ending disease processes and
  address them with patients and families
• Help patients make end-of-life decisions such as
  living wills, power of attorney and DNR
• Consider Hospice and Palliative care when cure is
  not an option

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End of Life

• Physicians can help patients and their families
  face the end-of -life, make reasonable end-of
  -life decisions and eliminate suffering to allow
  the patient to live their last days to the fullest