End of Life: Planning and Care Terence Grewe, D.O. Corporate Medical Director Trinity Hospice, LLC

Ethics in Long Term Care  Ethical Principles  Advanced Planning  Withholding/ Withdrawing Therapy  Medical Futility  Physician Assisted Suicide  Hospice and Palliative Medicine

Ethical Principals  Beneficence: physicians are obligated act always in the patient’s 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

Decision-Making Capacity  Patient’s ability to understand information  To make decisions based on the information  To communicate a choice

Decision-Making Capacity  May be temporarily compromised by:  Drugs  Psychological disturbances  Medical conditions  Advancing disease  Is not always the same as competence

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.)

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

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

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

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

... What is advance care planning?  Trust building  Uncertainty reduced  Helps to avoid confusion and conflict  Permits peace of mind

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

Step 1: Introduce the topic  Be straightforward and routine  Determine patient familiarity  Explain the process  Determine comfort level  Determine proxy

Step 2: Engage is structured discussions  Proxy decision maker(s) present  Describe scenarios, options for care  Elicit patient’s values, goals  Use a worksheet  Check for inconsistencies

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

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

Elicit the patient’s values and goals  Ask about past experiences  Describe possible situations  Write a letter

Use a validated advisory document  A number are available  Easy to use  Reduces chance for omissions  Patients, proxy, family can take home

Step 3: Document patient preferences  Review advance directive  Sign the documentation  Enter into the medical record  Recommend statutory documents  Ensure portability

Step 4: Review, update  Follow up periodically  Note major life events  Discuss, document changes

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

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

Preparation for the last hours of life...  Advance planning  personal choices  caregivers  setting  Loss, grief, coping strategies

... Preparation for last hours of life  Educating / training patients, families and caregivers  communication  tasks of caring  what to expect  physiologic changes, events  symptom management

Advance practical planning...  Financial, legal affairs  Final gifts  bequests  organ donation  Autopsy

... Advance practical planning  Burial / cremation  Funeral / memorial services  Guardianship

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

Choice of setting...  Burdens, benefits weighed  Permit family presence  privacy  intimacy

...Choice of setting  Minimize family burden  risk to career, personal economics, health  ghosts  Alternate setting as backup

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

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

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

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

... Role of the physician  Discuss alternatives  including palliative and hospice care  Document preferences, medical orders  Involve, inform other team members  Assure comfort, nonabandonment

Common concerns...  Legally required to “do everything?”  Is withdrawal, withholding euthanasia?  Are you killing the patient when you remove a ventilator or treat pain?

... Common concerns  Can the treatment of symptoms constitute euthanasia?  Is the use of substantial doses of opioids euthanasia?

Life-sustaining treatments  Resuscitation  Elective intubation  Surgery  Dialysis  Blood transfusions, blood products  Diagnostic tests  Artificial nutrition, hydration  Antibiotics  Other treatments  Future hospital, ICU admissions

8-step protocol to discuss treatment preferences 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

... 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

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

Example 1: Artifical feeding, hydration  Difficult to discuss  Food, water are symbols of caring  PEG tubes and artificial hydration may actually induce suffering

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

Address misperceptions  Cause of poor appetite, fatigue  Relief of dry mouth  Delirium  Urine output

Help family with need to give care  Identify feelings, emotional needs  Identify other ways to demonstrate caring  teach the skills they need

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

Example 2: Ventilator withdrawal  Rare, challenging  Ask for assistance  Assess appropriateness of request  Role in achieving overall goals of care

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

Terminal weaning  Rate, PEEP, oxygen levels are decreased first  Over 30–60 minutes or longer  A Briggs T piece may be used in place of the ventilator  Patients may then be extubated

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

Prevent symptoms  Breathlessness  opioids  Anxiety  benzodiazepines

Prepare the family...  Describe the procedure  Reassure that comfort is a primary concern  Medication is available  Patient may need to sleep to be comfortable

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

Write appropriate medical orders  DNR  DNI  Do not transfer  Others

Medical Futility  Patients / families may be invested in interventions  Physicians / other professionals may be invested in interventions  Any party may perceive futility

Definitions of medical futility  Won’t achieve the patient’s goal  Serves no legitimate goal of medical practice  Ineffective more than 99% of the time  Does not conform to accepted community standards

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

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

Differential diagnosis of futility situations  Inappropriate surrogate  Misunderstanding  Personal factors  Values conflict

Surrogate selection  Patient’s stated preference  Legislated hierarchy  Who is most likely to know what the patient would have wanted?  Who is able to reflect the patient’s best interest?  Does the surrogate have the cognitive ability to make decisions?

Misunderstanding of diagnosis / prognosis  Underlying causes  How to assess  How to respond

Misunderstanding: underlying causes...  Doesn’t know the diagnosis  Too much jargon  Different or conflicting information  Previous overoptimistic prognosis  Stressful environment

... Misunderstanding: underlying causes  Sleep deprivation  Emotional distress  Psychologically unprepared  Inadequate cognitive ability

Misunderstanding: how to respond...  Choose a primary communicator  Give information in  small pieces  multiple formats  Use understandable language  Frequent repetition may be required

... Misunderstanding: how to respond  Assess understanding frequently  Do not hedge to “provide hope”  Encourage writing down questions  Provide support  Involve other health care professionals

Personal factors  Distrust  Guilt  Grief  Intrafamily issues  Secondary gain  Physician / nurse

Types of futility conflicts  Disagreement over  goals  benefit

Difference in values  Religious  Miracles  Value of life

A due process approach to futility...  Earnest attempts in advance  Joint decision making  Negotiation of disagreements  Involvement of an institutional committee

... A due process approach to futility  Transfer of care to another physician  Transfer to another institution

Euthanasia and Physician- Assisted Suicide  Proponents stress patient autonomy and mercy  Opponents claim harm to patients  Patient’s request for PAS should signal a problem with the patient’s care  Expert palliative care can eliminate the desire for PAS

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

... 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

6-step protocol to respond to requests Clarify the request 2. Assess the underlying causes of the request 3. Affirm your commitment to care for the patient

... 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

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

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

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

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