With modern medicine offering countless new technologies and treatments, health care decision-making can become a difficult and complex task. Indeed, as the number of options grows, treatment can vary greatly, even among patients confronted with the same illness. Decisions should be made according to the goals of care. If cure is the expected goal, one might want to treat a pneumonia aggressively with antibiotics, but if quality of life is the primary goal, one might not want to treat that same pneumonia if it occurs as a terminal event in advanced illness. Informed Consent The best treatment decisions have been described by medical ethicists as a "combination of medical, emotional, aesthetic, religious, philosophical, social, interpersonal and personal judgments." As a result, patients must take a more active role in their health care by bringing their history, values, philosophies, strengths and emotional needs to the decision-making process. They also must have sufficient information about proposed treatments before making choices. This practice is called informed consent. It implies an acknowledgment of the patient's ability to decide (capacity) and communication of information sufficient to assist the patient in making the best decision under the known circumstances (informed). Concept of Competency In order to be valid, consent to care or treatment must be given by a competent patient. This implies that the person can understand, reason and evaluate the consequences of the decision and express his or her desires. The determination of capacity is a matter of clinical judgment, and there is no consensus on a set of criteria for its evaluation. Although distinct from capacity testing, mental status evaluation is often used as a screening tool to assess the patient's thought processes. Capacity may fluctuate over time due to fatigue, disease, medication, the environment, and available information. It is important to remember that consent is specific to a particular decision and not once and for all. It needs constant evaluation. Once a patient is determined incompetent, whether the determination is made clinically or legally, someone needs to be designated to make decisions for the patient. This person is generically known as a surrogate who can be court-appointed (guardian) or patient-appointed (surrogate, agent). In their decision-making, third parties have to take into consideration previously expressed wishes when available; otherwise, the best interests of the patient will guide the decision. Truth Telling: Information to Patient In order for the patient or his representative to decide a course of treatment, they need to be adequately informed. Physicians and health care professionals need to guide their patients with knowledge, truth and compassion. They need to know what information to provide, how much information to provide, and how to respond to patients who elect not to have too much information. Truthful telling of the facts is critical to a patient's ability to make an autonomous and reasonable decision. Choices made irrationally, based on emotions and/or insufficient information, can lead to dissatisfaction with the medical system and increased stress. The information required for an informed consent includes the patient's medical condition, the stage in the evolution of the disease, proposed treatments and alternatives, and the benefits, risks and likely outcomes in each case. Consent is embedded in the doctor-patient relationship and depends largely upon communication. Technical language, medical uncertainties, limits to understanding from the patient, culture and fears can all combine to complicate doctor-patient communication. The mastering of communication skills is important to the practice of informed consent. Advance Directives Advance directives have been developed as a reaction to heroic measures in medicine, mainly to set limits on their use. An advance directive is an oral or written instruction specifying the wishes of a person concerning medical treatment in anticipation of future inability to decide. It also enables a person to choose another person (surrogate) to make decisions under the same circumstances. An advance directive may be expressed through a living will and/or a durable power of attorney (DPOA). Living wills are legal documents that specify what treatments would be acceptable or unacceptable to the patient in case of incapacity. A living will can be general or specific, including specific scenarios such as artificial nutrition and hydration or any treatments. Durable power of attorney (DPOA) is a document in which a patient appoints another person (surrogate) who will decide about the care of that person in case of incompetence. Surrogates, also referred to as health care proxies or agents, may be family members or friends. Learn more: View the video, Decision Making in Patients Without Capacity: Advance Directives and the NYS Family Health Care Decisions Act (FHDA) Living wills and DPOAs can be arranged through various means according to state or national laws. The surrogate's decision is called a substituted judgment. It should take into consideration the best interests of the patient and consider the patient's past behavior, statements, or choices to determine as accurately as possible what the patient would have wanted. When previous wishes have been specifically expressed, they should be honored. Living wills and DPOAs are complementary, since a living will cannot provide for every possible situation, and a DPOA cannot determine care without information about the patient's wishes. Today, living wills are legally recognized throughout the United States, although Massachusetts, Michigan and New York have not enacted living will laws. Currently, 48 states and the District of Columbia have legislation that recognizes the appointment of a health care proxy; Alabama and Alaska are the exceptions. While most Americans support advance directives, 1996 data show that only 20 to 25% have them in place (Lederberg MS. Ethical Issues in Oncology: A Psychological Framework. In Holland JC, ed., Psycho-Oncology. New York: Oxford University Press, 1998, p. 1098.). Discussion about advance directives should be included in the treatment plan and should take place with the surrogate present. Advance directives should be updated regularly to ensure a person's wishes are current and accurate. Decision-Making Issues Websites Advance Directives (National Hospice and Palliative Care Organization, NHPCO) Dying Matters: Raising Awareness of Dying, Death and Bereavement (UK) End-of-life Decision-Making (Family Caregiver Alliance) Facing Death (PBS: Frontline) Life After Loss (AARP) Life Planning from Caring Coalition of Metro New York (MS Word™ Document) Making Decisions with Families at the End of Life (AAFP) Nursing Home Compare (Medicare)

Department of Pain Medicine and Palliative Care Beth Israel Medical Center, New York City ©2005 Continuum Health Partners, Inc. www.stoppain.org/palliative_care