Advance Care Planning

by Shaylona Kirk, MD

The following is an ABN Literature review as of Nov, 2010 and should not be interpreted as legal advice on ACP

Advance Care Planning (ACP) is “a process that involves preparing for future medical decisions in the hypothetical event that individuals are no longer able to speak for themselves when those decisions need to be made” (Levi and Green 4). ACP includes contemplating one’s values and preferences and communicating those preferences to others. The ACP process often culminates in the creation of an advance directive, which usually includes a living will and an assignment of a medical power of attorney. Unexpected accident or illness can happen at any stage of life, so it is recommended that all adults should consider engaging in advance care planning.

Definitions

Advance Directives: written, legal documents that allow you to plan and communicate your wishes about medical treatment in end-of-life situations. Advance directives provide a way for you to convey your preferences and have input in decisions when you can no longer speak your wishes. There are two types of advance directives that are generally completed: a living will and a medical power of attorney. The Arizona Attorney General’s Office provides generic forms for the public’s use (available at https://www.azag.gov/sites/default/files/sites/all/docs/lifecare/2015/LCP_Fillable_Packet_2015.pdf). You can also write up your own statement, without using a form, as long as you follow the state’s witnessing requirements (see “Law” section below for AZ witnessing requirements).

You can change or revoke your advance directive at any time. Ideally, if you choose to change your advance directive you should put the changes in writing and sign and date them, but even if you just verbally express the changes to your physician, these verbal statements will have priority over statements made in your living will (“Put it in Writing”).

Living Will: a written statement or form that describes your treatment preferences in end-of-life situations. This document indicates to health care providers what type of medical treatments and life-sustaining measures you do or do not want if you become terminally ill, permanently unconscious, or in a vegetative state and are unable to make your own decisions. Examples of topics that may be addressed are mechanical breathing (respiration and ventilation), artificial nutrition and hydration, dialysis, organ or tissue donation, and resuscitation.

Before your living will can guide medical decision-making two physicians must certify: 1) You are unable to make medical decisions; and 2) You are in the medical condition specified in the state's living will law (such as "terminal illness" or "permanent unconsciousness") (“What are Advance Directives?”).

Medical Power of Attorney: Living wills cannot cover every possible situation; therefore you may also want to choose someone you trust to be your medical power of attorney. Appointing a medical power of attorney also may be referred to as designating a health care agent or surrogate-decision maker. This legal document allows you to select any person to make medical decisions for you if you should become unable to make those decisions for yourself. The person you choose will be referred to as your health care agent or proxy.

Before a medical power of attorney goes into effect the patient’s physician must conclude that the patient is unable to make his or her own medical decisions. In addition, if a patient regains the ability to make decisions, the agent cannot continue to act on the person's behalf. Many states have additional requirements that apply only to decisions about life-sustaining medical treatments (for example, before your agent can refuse a life-sustaining treatment on your behalf, a second physician may have to confirm your doctor's assessment that you are incapable of making treatment decisions) (“What are Advance Directives?”).

Statistics/Research

Overall, studies have indicated that only 5-20% of the general population has completed advance directives (Alano et al. 267; Ramsaroop, Reid, and Adelman 277). Despite all the promotion of advance directives that has occurred over the past couple of decades, these numbers have not shown great improvement.

The Agency for Healthcare Research and Quality, within the U.S. Department of Health & Human Services, has done many studies on advance care planning. Their research reveals that:

  • “Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record.
  • Only 12 percent of patients with an advance directive had received input from their physician in its development.
  • Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.
  • Having an advance directive did not increase documentation in the medical chart regarding patient preferences.
  • Advance directives helped make end-of-life decisions in less than half of the cases where a directive existed.
  • Advance directives usually were not applicable until the patient became incapacitated and "absolutely, hopelessly ill."
  • Providers and patient surrogates had difficulty knowing when to stop treatment and often waited until the patient had crossed a threshold over to actively dying before the advance directive was invoked.
  • Language in advance directives was usually too nonspecific and general to provide clear instruction.
  • Surrogates named in the advance directive often were not present to make decisions or were too emotionally overwrought to offer guidance.
  • Physicians were only about 65 percent accurate in predicting patient preferences and tended to make errors of undertreatment, even after reviewing the patient's advance directive.
  • Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development.
  • According to patients who are dying and their families who survive them, lack of communication with physicians and other health care providers causes confusion about medical treatments, conditions and prognoses, and the choices that patients and their families need to make.
  • One AHRQ study indicated that about one-third of patients would discuss advance care planning if the physician brought up the subject and about one-fourth of patients had been under the impression that advance care planning was only for people who were very ill or very old. Only 5 percent of patients stated that they found discussions about advance care planning too difficult.
  • AHRQ-funded studies have shown that discussing advance care planning and directives with their doctor increased patient satisfaction among patients age 65 years and over.
  • Patients who talked with their families or physicians about their preferences for end-of-life care: had less fear and anxiety, felt they had more ability to influence and direct their medical care, believed that their physicians had a better understanding of their wishes, and indicated a greater understanding and comfort level than they had before the discussion.
  • Compared to surrogates of patients who did not have an advance directive, surrogates of patients with an advance directive who had discussed its content with the patient reported greater understanding, better confidence in their ability to predict the patient's preferences, and a stronger belief in the importance of having an advance directive.
  • Finally, patients who had advance planning discussions with their physicians continued to discuss and talk about these concerns with their families. Such discussions enabled patients and families to reconcile their differences about end-of-life care and could help the family and physicians come to agreement if they should need to make decisions for the patient.” (Kass-Bartelmes and Hughes 2)

Predicting Advance Directive Completion:

Alano et al. researched what factors were significantly associated with having an advance directive (AD). These factors include: female gender, age (the older the age group, the more likely they are to have an AD), race (Caucasians are more likely to have an AD), education (those with higher education are more likely to have an AD), and religion (members of certain religions, such as Catholicism, are more likely to have ADs than others) (269-270). In addition, subjects with ADs reported “needing control over their medical treatment”, “not wanting to be kept alive if in a coma”, feeling that an “AD would help in the relief of suffering at the end of life”, and “thinking it would help their family if their wishes are known” (Alano et al. 271).

The Alano study went on to discover what factors predicted AD completion. These included: thinking an AD will help in the relief of suffering at the end of life, being asked to complete an AD, having received an explanation about ADs and their importance, having undergone major surgery, having seen mass media information about ADs, an established relationship between the primary care physician and the patient, personal experience with mechanical ventilation, knowledge about the process of advance care planning, the physician’s willingness to effectively initiate such discussions, positive attitude, and health literacy (Alano et al. 269-270).

Barriers:

Barriers to AD completion have also been study. In many cases, lack of AD completion is related to physicians’ reluctance to address end-of-life care issues with their patients. Some reasons for this reluctance include physicians’ lack of understanding of ADs, erroneous beliefs about the appropriateness, discomfort with the subject, time constraints, and compensation concerns (Alano et al. 268). Patient barriers to AD completion include: deferring to family members or physicians, inconsistency with religious beliefs, finding the topic too distressing to think about, having difficulty actually completing the documents, and putting it off until later (Ramsaroop, Reid, and Adelman 279).

Improving Advance Care Planning:

“When asked who had the strongest influence in encouraging them to complete ADs, the most frequent answer was “children” (34%), followed by “self-decision” (22%), and “spouse” (17%). Surprisingly, healthcare providers were reported as “primarily influential” only 8% of the time” (Alano et al. 272). These findings indicate that it may be helpful to target the children and spouses of patients when organizing advance care planning initiatives.

SUPPORT was one of the first large studies to improve end-of-life decision making. This study was geared towards hospitalized patients with one or more serious illnesses. It was found that enhancing opportunities for more patient-physician communication did not necessarily lead to improved AD rates or improved implementation of end-of-life wishes (SUPPORT Principal Investigators). Perhaps the SUPPORT intervention would have been more effective if patient-physician communication had occurred much earlier in the course of illness (Alano et al. 268).

Studies have shown that passively educating patients about advance care planning (i.e. simply providing written materials) is a relatively ineffective method for increasing AD completion. Multiple studies have shown that the most successful way to increase AD completion is to incorporate direct patient-healthcare professional counseling and interactions over multiple visits (Ramsaroop, Reid, and Adelman 281; Alano et al. 273).

Law

The Patient Self-Determination Act of 1990 requires healthcare facilities that accept Medicare and Medicaid money to provide written information to all patients concerning their rights under state law to refuse or accept treatment and their right to complete advance directives. This act also requires that healthcare facilities ask individuals at the time of admission if they have an advance directive, document evidence of known advance directives in the patient’s medical record, and educate staff and the community about advance directives. “Aggressive programs to implement the requirements of the law have been carried out among different healthcare settings, and all 50 states have enacted legislation supporting ADs” (Alano et al. 267).

For a living will or health care power of attorney to be valid under Arizona law, the documents must be signed and dated by the subject and be notarized or witnessed in writing by at least one adult who was present when the subject signed and dated the documents and who can affirm that the subject “appeared to be of sound mind and free from duress” at the time. If a person is physically unable to sign or mark the documents, the notary or witness must verify on the document that the subject directly indicated that the documents express his or her wishes. The notary or witness cannot be the person designated to make medical decisions on the subject’s behalf or a person directly involved with the provision of health care to the subject at the time (ARS 36-3221, ARS 36-3261).

In Arizona, “A health care provider who makes good faith health care decisions in reliance on the provisions of an apparently genuine health care directive or the direction of a surrogate is immune from criminal and civil liability and is not subject to professional discipline for that reliance” (ARS 36-3205).

Arizona will accept health care directives that have been prepared in another state, as long as it was valid in the place where it was originally made and it does not conflict with Arizona criminal law (ARS 36-3208).

Arizona law also states that a person can revoke his or her own health care directive or disqualify a surrogate by doing any of the following: “1) making a written revocation of a health care directive or a written statement to disqualify a surrogate; 2) orally notifying the surrogate or a health care provider; 3) making a new health care directive; or 4) any other act that demonstrates a specific intent to revoke or to disqualify a surrogate” (ARS 36-3202).

Pros and Cons of Advance Directives (as discussed in current literature)

Pros of Advance Directives:

  • Advancements in medical technology have greatly enhanced the ability to prolong life.
  • Many people want to avoid extending personal and family suffering by artificial prolongation of life if they are in a terminal or persistent vegetative state.
  • Lack of an AD can lead to medical over- or undertreatment (Black and Emmet 222).
  • ADs increase the probability that diagnostic, preventive, therapeutic, and palliative interventions will be administered to patients according to with their preferences (Patel, Sinuff, Cook).
  • Family members are burdened when they must make treatment decisions without having communicated with the patient about his or her treatment goals and preferences (Black and Emmet 222).

Criticisms of Advance Directives:

  • ADs fail to address the broader elements of advance care planning. ACP should instead be viewed as a process of communication to determine values and goals in future health care and end-of-life decision making (Black and Emmet 222).
  • Traditionally, advance care planning requires patients to make treatment decisions in advance. Pre-specifying treatment preferences in an advance directive document may be appropriate for patients who can “articulate consistent treatment preferences based on long-held beliefs” (Sudore and Fried 257), but for most people advance planning needs to be more of a process.
  • Advance directives frequently fail to affect the quality of care received at the end-of-life (Sudore and Fried 256).
  • Individuals have difficulty predicting what they would want in future circumstances (Sudore and Fried 257; Levi and Green 4).
  • Patients’ treatment preferences and values change over time and with changes in health (Sudore and Fried 257).
  • “Broad values statements, such as wanting to maintain dignity or be free from pain, have been found to be too general to inform individual treatment decisions” (Sudore and Fried 257).
  • Often advance directives refer to foregoing treatment when the patient’s condition is “irreversible” or “terminal”, but it is difficult to determine when patients are actually in these states (Sudore and Fried 257).
  • There are often many more decisions that surrogates must make besides those addressed in typical advance directives (Sudore and Fried 257).
  • It is difficult for many patients to express their thoughts accurately on paper, and even if the person who writes the advance directive feels that they have expressed their preferences accurately, it still may be very confusing to those interpreting it (Levi and Green 4).
  • There are problems when it comes to translating AD documents into appropriate medical decision making at the bedside (Levi and Green 4).
  • Pre-specified wishes may need to be reevaluated when unforeseen clinical contexts occur.
  • It is challenging to keep track of the necessary information so the AD is available when needed (Levi and Green 4).
  • There has been empirical evidence that advance directives have little effect on the actual decisions made at the end-of-life on behalf of patients. Levi and Green refer to the SUPPORT study, which was “a 4-year study, conducted in the 1990s at five hospitals, that examined the relationship between the presence of advance directives and the end-of-life care received by over 9,100 patients.” It was “found that advance directives had no discernible effect on the nature or extent of medical care that patients received at the end of their lives” (5).
  • Some say the emphasis on patient autonomy is misguided and that when individuals are at their most vulnerable we should protect them from harm, not try to engage in a most likely impossible task of trying to discern their exact wishes. (Levi and Green 5)

Roles and Responsibilities of Healthcare Professionals

Physicians are in a good position to know when to bring up end-of-life topics with patients, so they are the ones that need to initiate and guide ACP discussions. “AHRQ studies indicate that physicians can conduct advance care planning discussions with some patients during routine outpatient office visits. Hospitalization for a serious and progressive illness offers another opportunity” (Kass-Bartelmes and Hughes 3).

AHRQ sponsored research has suggested a five-part process for physicians to use when having end-of-life care discussions with patients:

  1. “Initiate a guided discussion. During this discussion, the physicians should share their medical knowledge of hypothetical scenarios and treatments applicable to a patient's particular situation and find out the patient's preferences for providing or withholding treatments under certain situations. The hypothetical scenarios should cover a range of possible prognoses and any disability that could result from treatment.”
  2. "Introduce the subject of advance care planning and offer information. Patients should be encouraged to complete both an advance directive and durable power of attorney. The patient should understand that when no advance directive or durable power of attorney exists, patients essentially leave treatment decisions to their physicians and family members. Physicians can provide this information themselves; refer the patient to other educational sources, including brochures or videos; and recommend that the patient talk with clergy or a social worker to answer questions or address concerns.”
  3. “Prepare and complete advance care planning documents. Advance care planning documents should contain specific instructions.”
  4. “Review the patient's preferences on a regular basis and update documentation. Patients should be reminded that advance directives can be revised at any time. . . During reviews of advance directives, physicians should note which preferences stay the same and which change. Preferences that change indicate that the physician needs to investigate the basis for the change.”
  5. “Apply the patient’s desires to actual circumstances” (Kass-Bartelmes and Hughes 4-5).

Nurses routinely discuss advance directives as a result of the Patient Self-Determination Act (Black and Emmet 222). “Nurses enhance patient autonomy by discussing and promoting understanding about advance directives and future care desires... Nurses are involved in patient education and advocacy regarding advance directives, initiate advance care plans, and influence care planning among their patients” (Black and Emmet 223).

Nurses ACP discussions with patients tend to focus more broadly on the topic of ACP, not just on the documents. Nurses try to involve patients’ families in these discussions and generally try to elicit patient values to guide future decision making. Age, years of experience, having served in the capacity as a surrogate decision maker, and having personally completed an advance directive were associated with higher rates of having these discussions with patients and their families. Nurses are well-positioned to have these conversations with their patients (Black and Emmet 226).

Ideas and Strategies for Improvement

  1. “National Healthcare Decisions Day is a nationwide campaign aimed at increasing advance care planning among adults throughout the country. This broad-scale initiative simultaneously seeks to encourage Americans to express their wishes regarding future healthcare decision making, rally a national media campaign to promote the importance of planning in advance for care, and mobilize national, state, and community organizations to develop a wide range of educational activities. The movement culminates in an annual day of multiple events throughout the country designed to inundate the public about advance care planning. The national event originated from the successful statewide Virginia Advance Directives Day’s inaugural event, conducted on April 18, 2006” (Black 11).

  2. Passive education of patients about ADs using written materials (without direct counseling) has been found to be a very unsuccessful strategy for encouraging AD competion. Intervention strategies associated with the most favorable AD completion rates included direct patient-healthcare professional interactions. It was found to be helpful to use iterative interactions with a healthcare provider over multiple visits (Ramsaroop, Reid, and Adelman 281; Patel, Sinuff and Cook). Ramsaroop and colleagues comment that “Although less-intensive strategies in terms of amount of time devoted to patient education were found to be less effective, they will likely be far more practical to implement in many time-pressured practices” (Ramsaroop, Reid, and Adelman 281). For instance, a study giving the patient written material and then having the physician spend 3-5 minutes discussing it with them during their visit resulted in a completion rate of 44%. In order to use patient visit time effectively and efficiently it is important to gauge patient receptivity to AD discussions. These authors suggest using the stages-of-change model when engaging patients in these discussions because patients’ receptivity may range from “precontemplation” to “action” (Ramsaroop, Reid, and Adelman 281-2).

  3. The Department of Health and Human Services report Advance Directives and Advance Care Planning concluded that the use of ADs and the attempts to promote advance care planning have largely failed. Many other articles have supported this conclusion. However, the report also identified two approaches that have demonstrated success: Respecting Choices (RC) and the Physician Orders for Life-Sustaining Treatment (POLST) paradigm.

    RC is a collaborative effort of the La Crosse, Wisconsin health organizations. They have developed a system in which six goals as part of routine care: “(1) adult patients are invited to understand, to reflect on, and to discuss plans for future healthcare relevant to their stage of illness; (2) adult patients are provided competent assistance by trained nonphysicians in the planning process; (3) written plans (however documented) are accurate, as specific as possible, and understandable to all stakeholders; (4) written plans are stored, transferred, and retrievable wherever the patient is being treated; (5) plans are updated and become more specific as illnesses progress; and (6) plans are reviewed and honored at the right time” (Hammes, et al. 1249-1250). In order to achieve these goals an ACP microsystem was organized, in which a group of people are organized to elicit, understand, document and honor patients’ preferences about future medical care. This system undergoes continuous quality improvement. Three recent important improvements include the implementation of the POLST paradigm regionwide; the creation of a user-friendly, clinically specific, state statue-compliant document called La Crosse POAHC; and the development of an ACP application in the electronic medical record. A study was done to determine the effects of these changes, and it was found that the ACP process was further improved by these changes (Hammes, et al. 1250-2).

    In a La Crosse study that included data about adults who died over a 7-month period in 2007/08 it was found that the prevalence of ADs was 90% and the ADs were available in the decedent’s medical record at the location of death 99.4% of the time. With the updated and more user friendly La Crosse POAHC document and the POLST forms, users were more likely to document specific preferences about CPR and hospitalization than previously. In addition, using this systemic approach led to treatment being consistent with preferences regarding CPR and hospitalization in 99.5% of cases (Hammes, et al. 1252).

  4. Sudore and Fried propose that the focus of ACP should be on preparation for in-the-moment decision making. They state that the main objective of ACP should be to “prepare patients and surrogates to participate with clinicians in making the best possible in-the-moment decisions” (Sudore and Fried 257). Instead of make premature decisions based on incomplete information, decisions should take into consideration things such as the current clinical context, shifting goals, and patients’ and surrogates’ needs. An advance directive can still be made when using this approach, but it is recognized as just one piece of information to be used during in-the-moment decision making (Sudore and Fried 257-258).

    “Three key steps address patients' and surrogates' needs for preparation for in-the-moment decision making: 1) choosing an appropriate surrogate decision maker; 2) clarifying and articulating patients' values over time; and 3) establishing leeway in surrogate decision making” (Sudore and Fried 259). Clinicians are the ones who need to engage patients in these preparatory steps. In order to work, the interactions must be brief. For patients who are not ready to engage in preparation, the clinician can use the time to educate and motive them. For patients who are ready to engage in preparation, the clinician can guide them through the preparatory steps over one or more visits or can encourage highly motivated patients to continue preparation on their own. For step 1, the authors note that ideally the surrogate decision maker will accompany the patient to an appointment so that the clinician can assess their understanding and acceptance of the surrogate role. For step 2, it may be helpful to have patients discuss how they feel about health states they have either personally experienced or seen others experience. As a patient’s illness progresses, the discussion can move from general considerations to more specific personal experiences. For step 3, patients and surrogates should be encouraged to think about factors, other than patient’s preferences, that may be relevant to in-the-moment decisions and patients should consider providing surrogates leeway in decision-making. Two common scenarios are patients who express a desire to undergo treatment regardless of outcome and patients who express a desire to be cared for at home. For the first, clinicians can ask, “What if your health changes and your doctors recommend against further treatment?” and for the second clinicians can ask, “What if it is too hard for loved ones to provide care for you/help you die at home?” (Sudore and Fried 259-260).

    Sudore and Fried conclude that, “The main objective of advance care planning, rather than advance treatment decisions, should be to prepare patients and surrogates to work with their clinicians to make the best possible in-the-moment medical decisions” (260).

  5. Levi and Green developed a computer based decision-aid called Making Your Wishes Known: Planning Your Medical Future. It is an interactive, self-directed computer program that uses a question-answer format and includes audio, text, graphics, patient vignettes, and videotapes of “experts”. The program “translates an individual’s values and goals into a meaningful advance directive that explicitly reflects their healthcare wishes and outlines a plan for how they wish to be treated. It does this by (1) educating users about advance care planning; (2) helping individuals identify, clarify, and prioritize factors that influence their decision-making about future medical conditions; (3) explaining common end-of-life medical conditions and life-sustaining treatment; (4) helping users articulate a coherent set of wishes with regard to advance care planning—in the form of an advance directive readily interpretable by physicians; and (5) helping individuals both choose a spokesperson, and prepare to engage family, friends, and health care providers in discussions about advance care planning” (Levi and Green 3-5).

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