Patient Decision Making Pennsylvania Coalition of Nurse Practitioners November 7, 2015 Objectives To identify the legal and ethical principles which form the basis for patient decision making; To understand the various forms of advance care planning tools; To understand the difference between a health care agent and a health care representative; Understand the importance of advance care planning. Hypothetical John Smith, 25 years old, is in the ED following a car accident. He wants to leave without receiving treatment. What can you do? What should you do? What if John is intoxicated? What if John is depressed? 1
Hypothetical Sue Jones, 78 years old, is admitted after suffering a stroke. A decision needs to be made about insertion of a feeding tube. What do you want to know? Patient Decision Making GENERAL RULE: Every adult person of sound mind has a constitutional right to make decisions regarding his or her care. Even if it means the patient will die. Right to make Health Care Decisions Pennsylvania law grants every adult the right to make certain decisions about their health care: The right, under certain conditions, to decide whether to accept or reject medical treatments Including procedures that would prolong their life artificially Even if the individual is too sick to make decisions Advance Directive for Health Care Act, 54 Pa. C.S.A. 5401-5416 (2010) 2
Autonomy Underpinnings of this legal right is the medical ethics principle of autonomy: Health care providers are to act in such a way as to respect the patient s freedom to choose a course of action (or non-action) in accordance with his or her own values and circumstances. Basis for advance care planning, including living wills, powers of attorney and POLST. Competent Patients Few exceptions where the state s interest outweighs a patient s rights Preventing suicide Safeguarding integrity of medical profession Protecting third parties (children) Patients who lack decision making capacity When a patient lacks decision making capacity, we look to the patient s advance directive, guardian, or other surrogate decision maker. 3
Guardian A guardian is a court appointed individual or agency authorized to make medical decisions. Must have copy of court order. Has broad authority to make medical decisions but must make decision in best interest of patient. Advance Care Planning Tools Documents that express the persons wishes for future health care. Two traditional types of Advance directive: Living Will Health Care Power of Attorney POLST Advance Directive A written document that is prepared in advance of the need for health care. Expresses individual s wishes for future health care Allows individual to retain control over medical care when lacking decision making capacity. 4
Goals of Advanced Care Planning Allow people to retain control over the medical care they receive when unable to be involved in decisions by: Documenting treatment preferences Appointing a surrogate decision maker Encouraging communication between individual, physician and family Living Will What is it? A writing that expresses a patient s wishes and instructions for health care when the patient is determined to be incompetent and either permanently unconscious or has an end stage medical condition. Living Will Allows patient to express treatment wishes regarding: CPR Artificial nutrition and hydration Antibiotics Mechanical ventilation Dialysis 5
Living Will Becomes Operative A copy is provided to the attending physician AND Patient is determined by the attending physician to be incompetent AND To have an end-stage medical condition or to be permanently unconscious. Living Will Becomes Operative When a living will is operative, the attending physician and other health care providers must act in accordance with its provisions or transfer care. Health Care Power of Attorney (HCPOA) What is it?? Patient designates someone (an agent) to make medical decisions on behalf of patient. Patient can define the medical decision making authority of agent. Decision making authority is not limited to end of life decisions. Imperative that you understand when HCPOA is operative and the authority of the agent. 6
HCPOA Options HCPOA may also: Nominate someone to serve as a guardian in the event of a court proceeding regarding competency. Other provisions regarding the implementation of health care decisions by an agent. Request that the health care agent exercise sole and absolute discretion to consult the patient s relatives, cleric or physician if uncertain of the patient s wishes or best interests. HCPOA -- When Operative Unless otherwise specified in the HCPOA, a HCPOA becomes operative when: A copy is provided to the attending physician AND The attending physician determines that the patient is incompetent. HCPOA Appointment of Agents Patient may appoint: More than one health care agent who shall act jointly unless the HCPOA provides otherwise. One or more successor agents who shall serve in the order named in the HCPOA. 7
Authority of Health Care Agent Health care agent has authority limited only by HCPOA. Health care agent has the authority to make any health care decision and to exercise any right and power regarding the patient s care, custody and health care treatment that the patient could have made and exercised. Health Care Representatives A health care representative is an individual authorized by statute to make health care decisions for a patient when the patient is incompetent and does not have a living will, HCPOA, or guardian. Who Can Be Representative? Can be someone appointed by the patient in writing or by personally informing the attending physician or health care provider. Can be someone identified in the law. Patient can identify a different order of priority or disqualify someone from serving. 8
Who Can Be Representative? Law establishes a hierarchy of people related to the patient who can serve (in descending order). Spouse and any adult child of the patient who is not a child of the current spouse Adult child Parent Adult sibling Adult grandchild Adult who has knowledge of patient s beliefs and values Who Can Be Representative? Someone of higher priority may assume the authority to act even if someone of lower priority has been making decisions. Appointment More than one individual in a class can serve as representative. If there is disagreement among members in class about decision, can rely on majority decision. If there is no majority decision, no decision can be made. The class must resolve their disagreement 9
Authority of Representative Generally, has same broad authority as agent, but must follow same decision making steps as an agent. Authority of Representative MAIN DIFFERENCE Health care representative MAY NOT direct the withholding or withdrawal of care necessary to preserve life unless the patient is permanently unconscious or has an end-stage medical condition. So, if patient is neither permanently unconscious nor has an end stage medical condition, health care providers must provide life sustaining treatment unless the patient refused the care while competent or there is a HCPOA appointing an agent. Decision Making Process by Surrogate Decision Maker Surrogate decision maker must make decision in accordance with the clear, written instructions contained in a patient s advance directive. 10
Decision Making Process by Surrogate Decision Maker If no clear, written instructions, then must make decision in accordance with the known values and beliefs of the patients. Stand in the shoes principle Requires prior discussions between patient and surrogate decision maker Decision Making Process by Surrogate Decision Maker If surrogate decision maker is unaware of patient s values and beliefs, then make decision in the best interest of the patient. Duties of Physician and Health Care Provider Place copy of Advance Directive in patient s medical record. Record in the medical record any determination that a patient is incompetent and, if possible, notify the patient and any health care agent of such determination. 11
Other Information If a provision of an advance health care directive conflicts with the provision of another advance health care directive, the instrument with the latest date of execution takes priority. Other Information Special rules regarding pregnancy. Designation of a spouse is revoked upon the filing of an action in divorce, unless clear that the patient intended the designation to continue regardless of divorce. Other Information Broad liability protections for physicians and other health care providers for complying in good faith with living wills and the decisions of health care agents and representatives. Broad liability protections for persons serving in good faith as a health care agent or representative. 12
Advance Directives From Other States An advance directive executed in another state that is in conformity with the laws of that state is considered valid in Pennsylvania except to the extent that the advance directive would allow a patient to direct procedures inconsistent with the laws of Pennsylvania. Examples might be patient assisted suicide and pregnant women. Advance Directive Form State supplies a standard Advance Directive form. Person can draft own advance directive. Advance Directive must be: Signed by the patient Dated Witnessed by 2 individuals DOES NOT NEED TO BE NOTARIZED Successful Advance Care Planning To be successful, advance care planning must be a process of ongoing discussion between individual, physician, and family. More than a form Active involvement Continued education about prognosis and treatment options 13
Limitations Recent studies have shown that traditional methods of communicating the life sustaining treatment preferences of patients, such as advanced directives, are largely ineffective at altering the end-of-life treatments a patient actually receives. Limitations of Advance Directives Advance directive may not be available. Not completed by most adults Only about 20% of Pennsylvanians have completed an advance directive Not transferred between health care settings Advance directive may not be specific. About current diseases or conditions Regarding preferences about non-procedural issues Limitations of Advance Directives May not have resulted in discussion. Individual just completed form Surrogate/family and medical team left to interpret May not be current. Greater uncertainty about treatment preferences May not be followed if terminal status unclear. Does not immediately translate into physician order. 14
P ennsylvania O rders for L ife- S ustaining T reatment POLST Pennsylvania Orders for Life-Sustaining Treatment. Type of advance care planning tool. Intended for individuals who are ill and have a life expectancy of less than 1 year. Does not replace a Living Will or Health Care Power of Attorney. What is POLST? A medical order. Physician, nurse practitioner, or physician assistant Completed and signed by any provider Consistent, recognizable document across PA. Pulsar pink Accompanies person across all settings. Complements advance directives. May function as a DNR order Also provides treatment directions for multiple situations 15
POLST Allows individuals to express type of care desired. CPR Artificial nutrition/hydration Full or limited interventions Ideal for individuals in nursing homes or rehabilitation centers. POLST is for Seriously ill persons. Chronic, progressive disease Terminally ill persons. Persons with advanced frailty. Would you be surprised if the person died in the next year? Use of the POLST form is usually not appropriate for persons with stable medical or functionality problems or who have many years of life expectancy. Resources POLST form Revised ACP forms Brochure Decision making tool 16
Questions Maggie Costella, SVP, Legal Services, Lancaster General Health MFCostel@LGHealth.org 717-544-5860 17