ADVANCE CARE PLANNING: SURROGACY AND THE LIVING WILL

     The most common patient-related and legal problem in end-of-life care is the failure to complete a clearly written, scenario-specific Advance Care Plan (which includes both health care surrogacy and a Living Will). The most frequently cited study on the impact of having a Living Will on hospital patient care is the SUPPORT Study (Study to Understand Prognoses and Preferences of Outcomes and Risks of Treatments),(1)  which concluded that having a Living Will has little or no impact on resuscitation status or care in general. However, the majority of the Living Wills were not pertinent or specific to the patients’ conditions and only a minority of individuals had Living Wills, such that seeking guidance from the Living Will was not the usual standard of care at that time.  More comprehensive research is clearly needed on how to encourage patients to complete Advance Care Plans (ACPs), how to require healthcare providers to implement ACPs; and the ultimate outcomes obtained through the completion and implementation of well-written ACPs.

     In order for end-of-life care to be routinely and substantially directed by individuals, four vital goals must be met: (1) ACPs must be scenario specific, that is must specifically address the conditions and medical treatments relevant to dying patients; (2) our medical and social culture must accept and strive to recognize the existence of medical futility and the value of excellent palliative care; (3) compelling mechanisms must be in place for consistent implementation of the patient’s decisions, either as treatment choices actively expressed or previously made for hypothetical conditions through an ACP; and (4) physicians must write individualized, specific orders implementing end-of-life decisions, both inside and outside the hospital. Conversely, most Living Wills currently in effect contain vague language such as ”terminal condition” and “heroic treatment measures” which give inadequate guidance or are open to misinterpretation.  Even clear Living Wills are commonly ignored due to lack of specific medical orders.

    An example of an effective, scenario-specific Advance Directive is shown in Figure 3 (Project GRACE Advance Care Plan). This document, developed by Project GRACE (http://www.projectgrace.org/), is highly regarded by experts and patient advocates throughout the country. Features of importance are both (1) specific medical conditions (in which death is imminent or there is permanent loss of what most individuals would consider acceptable quality of life) and (2) specific treatments (particularly treatments intended to prolong life, which are usually undesirable under incurable circumstances). Also of importance are the designation of a surrogate and an alternate, clarity, and brevity (single page for easy reproduction and inclusion in medical records). Note that the choices made apply only to the specific conditions listed and only when the patient has little or no chance of recovery from those conditions.  Implementation of an ACP requires that the physician(s) and surrogate(s) agree that the ACP is relevant to the patient’s condition and that specific orders be written to assure that the appropriate treatment is given or withheld, in accordance with the patient’s expressed wishes.

    Physicians should encourage all of their adult patients (18 and older) to complete an Advance Care Plan, ideally at a time of wellness before a healthcare crisis arises. Instituting an office policy of discussing advance care planning during routine patient care and educating patients about their Advance Directives is an essential and integral part of providing good patient care. Too frequently, patients are asked to consider an Advance Directive for the first time upon admission to the hospital or a diagnosis of a life-threatening illness or disease, when they most likely have other concerns. The ideal time for a patient to make medical treatment decisions for care at the end-of-life is not upon hospital admission, be it routine or emergency, or a devastating diagnosis.

    By law (Patient Self-Determination Act, 1990), hospitals are required to provide and sufficiently educate and assist all admitted patients in completing Advance Directives. Although most hospitals routinely inquire as to whether patients have a Living Will, few actually provide adequate counseling and materials for good advance care planning. Hospitalized patients who do not have an Advance Directive should be offered unhurried assistance in preparing an ACP during the hospital stay. Counseling in ACP preparation may be done by any professional who has adequate understanding and competency in effective advance care planning (physicians, nurses, spiritual leaders, social workers, palliative care team members, etc.). Physically offering patients ACP documents with assistance in completion on many occasions, by many individuals and institutions, is necessary, if a majority of Americans are to complete documents that accurately reflect their wishes. Patients may obviously refuse to complete an advance care plan, but rarely do if they are fully informed of the importance of the document. Documentation of completion of an ACP should be a part of the standard medical record as a part of delivering quality health care.

    Individuals should be clearly informed that an Advance Care Plan is revocable. The patient may revoke an Advance Directive or previous designation of a surrogate(2)  in the following ways:

     A revocation will be effective when it is communicated to the surrogate, health care provider, or health care facility.”(3)             

Typically, the primary concern of individuals considering advance care planning is that vital, needed care may be inappropriately withheld.  It is important to point out that treatment is withheld only for treatments the patient has expressed as unwanted in the event that one of the incurable conditions listed in the ACP occurs. Counseling physicians and others should appeal to the patient’s understanding that avoidance or withdrawal of death-prolonging, futile treatment at end-of-life is typically an easy choice for the individual, but often a difficult and sometimes guilt-ridden decision for family. Thus, completion of a clear ACP is not only a significant step in ensuring that an individual’s decisions are carried out, but also takes a burden of responsibility off the shoulders of surrogate(s). Completion of an Advance Care Plan is truly a unique gift to self and family and physicians should prioritize ACP counseling with all adult patients as one of our greatest opportunities of caring for our patients. This should start by completing your own ACP.  Download the Project GRACE ACP (or another of your choice) and complete it now http://www.projectgrace.org/ Read and understand the “Helpful Facts” questions and answers section on the website and you will have no difficulty in counseling your patients. Both the questions and answers and the ACP are available free to your patients (1) through the web site; (2) by writing Project GRACE at 5771 Roosevelt Blvd., Ste. 701, Clearwater, FL 33760, or (3) by calling toll free 1-877-99-GRACE. Documents may be ordered or physicians and hospitals or other organizations may print (without modification) both the ACP and the questions and answers “companion document” for distribution by permission from Project GRACE. Contact lweber@projectgrace.org.

^[1] Rosenfeld KE, Wenger NS, Phillips RS, Connors AF, Dawson NV, Layde P, Califf RM, Liu H, Lynn J, Oye RK: Factors associated with change in resuscitation preference of seriously ill patients. The SUPPORT Investigators. Study to Understand Prognoses and Preferences of Outcomes and Risks of Treatments. Arch Intern Med 1996;156(14):1558-1564.
^[2] Fl. Stat. § 765.104.
^[3] Basta LL, Doty WD, and Geldart MDD. Medical Treatment of the Cardiac Patient Approaching the End-of-Life. In: Gerstenblith, Gary, ed. Contemporary Cardiology: Cardiovascular Disease in the Elderly. Humana Press Inc., Totowa, NJ 2005:369-371.
 

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