Advance Care Planning Senior Mentor Program Gere B. Fulton, Ph. D., J. D. School of Medicine The University of South Carolina

Advance Care Planning (ACP) There are two (2) components to advance care planning: 1) advance care planning (process) – clarifying one’s values concerning care, including medical treatment, at the end of life 2) advance care plan (product) – preparation of a document reflecting one’s values, e.g., a living will or a health care power of attorney (HCPOA)

Reasons for Advance Care Planning To assure that your wishes about end-of-life care are known and respected To facilitate communication and autonomy in the patient-physician relationship To provide guidance to your family and physician when you are unable to make decisions for yourself

Ability to consent Incompetence – a legal term. Competence is presumed and incompetence can only be pronounced by a court of law. Due process. Incapacity – a medical term. Inability to make the decision at hand. Unable to consent – Section 44-66-20(6) “…unable to appreciate the nature and implications of the patient’s condition and proposed health care, to make a reasoned decision concerning the proposed health care, or to communicate that decision in an unambiguous manner.”

Inability to consent Does not include minors Certified by two licensed physicians, each of whom has examined the patient Exception for emergencies if physician puts in writing that delay would be detrimental to the patient’s health Record should include an opinion regarding the cause and nature of the inability to consent, its extent, and its probable duration

Four Statutes Adult Health Care Consent Act (44-66-10) Declaration of a Desire for a Natural Death (44-77-50) Health Care Power of Attorney (62-5-501) Emergency Services Non-Resuscitation Order (44-78-10) It should be stressed that these documents are intended to apply only in cases where the patient is unable to make decisions. The loss of decision-making ability is called loss of capacity, to distinguish it from loss of competence. Be cause incompetence may result in the loss of important rights over both person and property, it can be determined only by a court after due process has been observed. By way of contrast, loss of decision-making capacity—sometimes called “unable to consent” (44-66-20)—means that the patient is unable to appreciate the nature and implications of their condition and proposed health care, to make a reasoned decision concerning the proposed health care, or to communicate that decision in an unambiguous manner. Inability to consent must be certified by two licensed physicians, each of whom has examined the patient.

Adult Health Care Consent Act Allows a surrogate to make all health care decisions when the patient has permanently lost capacity to do so Creates broader authority to withhold or withdraw LSMT than exists under the Living Will statute Any decision must be based on 1) the patient’s wishes (if known), or 2) the patient’s best interest. Establishes an order of priority for identifying the proper surrogate At the end of the year 2000, approximately 37 states had some form of surrogate consent provision in their legislative codes.

Order of Priority Guardian Attorney-in-fact (?) Person with statutory authority (?) Spouse, unless separated (with qualifications) Parent or adult child of the patient Adult sibling, grandparent or adult grandchild Any other relative by blood or marriage who is believed to have a close personal relationship

Declaration of a Desire for a Natural Death Living Will Applicable only to terminal illness or permanent unconsciousness Permanent unconsciousness cannot be certified until the declarant has remained unconscious for 90 consecutive days or another characteristic allows the diagnosis to be made with a high degree of medical certainty Diagnosis must be made by two physicians who have personally examined the patient The proposal for the Living Will originated with Louis Kutner, a Chicago lawyer, in 1967. The earliest Living Wills were promoted and distributed by the Euthanasia Educational Council, which became known as Concern for Dying in 1980 and then as Choice in Dying in 1991. In 2000 they became incorporated into Partnership for Caring. Choice in Dying, Inc. 1035 30th Street Washington, DC 20007 1-800-989-WILL The first Living Will law (statute) was created in California in 1976. The California Natural Death Act was passed in response to the publicity surrounding the case of Karen Ann Quinlan. The Quinlan case was decided by the New Jersey Supreme Court in 1976. The California law would only apply to the terminally ill and a Living Will could be executed no sooner than 14 days following a terminal diagnosis. California has recently (July 1, 2000) changed their law (AB 891, Chapter 658) so that an Advance Health Care Directive (AHCD) now replaces their Natural Death Act Declaration (LW) and the Durable Power of Attorney for Health Care. It extends to appointment of a guardian or conservator, autopsy and funeral arrangements, and organ and/or tissue donation. The trend (Sabatino) is toward the combining of disparate acts and by mid-2000, some 18 states had comprehensive or combined advance directive statutes.

Living Will (continued) Intention to refuse food or water by tube must be specifically authorized Comfort care can never be refused Document must be appropriately witnessed and notarized If the declarant is a patient in a hospital or nursing home, one of the two witnesses must be an ombudsman

Witnessing the Living Will Not related to declarant by blood, marriage or adoption, either as spouse, lineal ancestor, descendant of the parents of the declarant, or spouse of any of them Not directly responsible for declarant’s medical care Not entitled to a portion of the estate under will or intestate succession Not a beneficiary of a life insurance policy

Witnesses (continued) No more than one witness an employee of health facility in which the declarant is a patient Not the attending physician or an employee of the attending physician No claim upon the estate (not a creditor)

Health Care Power of Attorney The HCPOA allows you to appoint a surrogate decision maker, i.e. attorney-in-fact. The powers of the surrogate are broader than the terms of the living will, i.e. not limited to terminal illness or permanent unconsciousness. Since it is not limited to terminal illness or permanent unconsciousness, the legislatively-imposed waiting period for PVS would not apply. Arguably, unlike the living will, the HCPOA does not require notarization.

Emergency Services Non-Resuscitation Order Allows for a person with a terminal illness to refuse out-of-hospital CPR Must be ordered by physician (health care provider) and entered into the patient’s file Status may be identified by a form, a bracelet, or a necklace If there is a form, it should be transported with the patient if the patient is taken to a hospital As of mid-2000, 35 states had enacted out-of-hospital DNR statutes. In 1999, Virginia became the first state to create a durable DNR order, applicable to all health care providers and all settings. The law also eliminates the precondition that the patient be certified as having a “terminal condition.” Emerging issues from Sabatino’s national survey: Conceptual confusion over whether the EMS-DNR order is an advance directive or a doctor’s order, or a hybrid needs clarification. It may be argued that a DNR order can be based legally and ethically upon the authority of either the physician (as a treatment order) or the patient (as a refusal of treatment). How we talk about DNR orders is important. The message behind the term “do not resuscitate” is predominately negative, suggesting an absence of treatment or care. The reality is that comfort care and palliative care are affirmative and, for these patients, more appropriate interventions. Some authors have suggested DNAR (Do Not Attempt Resuscitation). Simplicity is an asset. Ohio uses DNRCC and DNRCC-A, which nobody seems to understand. Consensus on the ideal identification device for DNR or Comfort Care oders is lacking. Uniformity of protocols across settings is seen as the ideal. Education is essential.

For DNR patients the following procedures shall not be performed… CPR Endotracheal intubation and other advanced airway management Artificial ventilation Defibrillation Cardiac resuscitation medication Cardiac diagnostic monitoring

The following procedures may be provided as appropriate… Suctioning Oxygen Pain medication Non-cardiac resuscitation medication Assistance in the maintenance of an open airway, but not intubation or advanced airway management Control of bleeding Comfort care Support to patient and family

Planning for End-of-Life Care in South Carolina USC Institute of Public Affairs (2002) 18.7 % with living will (17.9% in 2001) 7.1% (18 to 29) to 45.3% (65 and older) 2001 figures were 7.2% and 45.2% 3.8% with health care power of attorney (7.5% in 2001!) 10.6 % with both (up from 7.6% in 2001) Percentage with “nothing” increased from 58.9% to 59.2%! ^ better educated

Gere B. Fulton, Ph. D, J. D. Palmetto Professor of Clinical Internal Medicine School of Medicine The University of South Carolina Columbia, SC 29208 Telephone: 803.419.4106 E-mail: gereburke@aol.com