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INTRODUCTION — Advance care planning (ACP) is an ongoing process in which patients, their families, and their healthcare providers reflect on the patient’s goals, values, and beliefs, discuss how they should inform current and future medical care, and ultimately, use this information to accurately document their future health care choices, ideally after an exploration of the patient and caregiver’s knowledge, fears, hopes, and needs [1-3]. The timing and nature of ACP may vary depending on whether the person is healthy, has mild to moderate chronic illness, or if they have an advanced, life-threatening illness and are thought likely to die within the next 12 months [2,3]. Regardless of the clinical scenario, ACP should be proactive, appropriately timed, and integrated into routine care. In addition, ACP should be revisited every time a person’s medical condition changes [2-5].
ACP requires communication between patients, their family, and their health care providers and is best done with consideration of the patient’s relationships and culture, which will then drive specific medical treatment decisions that can be recorded in an advance directive (AD). ACP may include the completion of an AD, although this is not the primary intent of ACP discussions. Rather, the intent of ACP is to ensure that patients receive care that is aligned with their goals and values.
This topic will discuss ACP and ADs. Issues related to other legal aspects and the ethical issues that arise in palliative care, as well as a practical approach to discussing goals of care are covered separately. (See "Ethical issues in palliative care" and "Legal aspects in palliative and end of life care" and "Discussing goals of care".)
ADVANCE CARE PLANNING — Perhaps the most wrenching question patients and families face is “which medical treatment is right for me?”. The answer to this question depends upon the patient, and his or her own values and preferences, and cannot be accurately predicted by the clinician or the family [6,7]. Clinicians bear the responsibility to help the patient explore treatment options and to help them formulate their preferences based upon a risk benefit analysis and their own values whenever circumstances allow.
Advance care planning (ACP) helps patients prepare for current and future decisions about their medical treatment and place of care. ACP is a process where a patient’s current condition and prognosis are reviewed, their wishes for information regarding their illness are elicited, and likely medical dilemmas are presented and options discussed . In an ideal ACP discussion, clinicians, the patient, and his or her loved ones think through particular approaches to follow if (or when) the patient’s health declines. It has been suggested that the main focus for ACP should be on preparing the patient and surrogate decision makers to participate with clinicians in making the best possible “in the moment” decisions . This process is iterative and typically occurs longitudinally within the context of an existing and continuing medical relationship.
Unfortunately, many patients face medical decision-making at a time they lack the capacity to make decisions for themselves . In such cases, surrogates must step in to make decisions that they feel are in the best interest of the patient. ACP also helps patients clarify their choice of surrogate and prepares that surrogate for decision-making on behalf of the patient. (See 'Surrogate decision makers' below.)
Successful ACP programs not only ensure that doctors, patients, and families talk about future care, but also that the content of those conversations is documented in a fashion that travels with the patient as he or she moves across health care settings .
Documentation by medical staff of prior discussions with patients about their goals for medical care, as well as their values and beliefs, can also assist greatly in decision-making if the individual loses the ability to participate in medical decision-making in the future. Ideally, an ACP discussion is followed by specific, actionable medical treatment orders (eg, Do Not Resuscitate orders) reflecting a person’s treatment preferences and current medical condition. Whenever possible, medical treatment orders should be written in a standardized format that is readily understood by health care professionals during an emergency.
ACP can include completion of an advance directive (AD) if patients wish to document their wishes for medical care and surrogate decision maker. There are various kinds of ADs, but the types typically recognized by State law in the United States are the Living Will (LW) and the Durable Power of Attorney for Health Care (DPAHC). LWs document patient preferences for life-sustaining treatments and resuscitation. DPAHCs (also known as “Healthcare Proxy Designations”) document his/her choice of a surrogate decision maker. The major limitation of the LW is that it may not be applicable to every decisional dilemma the patient will actually face. For that reason, the designation of a surrogate decision maker is especially important; surrogate decision makers can provide guidance to medical teams in cases where patients are incapacitated and the LW does not apply.
Asking a patient to consider his or her goals, values, and beliefs, and how these may influence their future medical decisions is helpful and may be a good place to start the conversation. Although the provider who engages in this discussion with the patient regarding ACP need not be a physician, ideally it should be a healthcare provider who is able to work in collaboration with the medical team and who can provide information about prognosis and outline the medical options and their benefits and risks . Additionally, the process need not occur with a single visit or a single provider, but can occur across multiple visits and providers who coordinate the patient’s care.
Benefits — ACP helps to ensure that patients receive care that is consistent with their wishes. In addition, it aims to provide guidance to the family and reduce their decisional burden about whether they are following these wishes . ACP can lay the groundwork for surrogates by providing a framework that they may utilize to inform decision-making, keeping in mind the patient’s goals, values, and beliefs, as well as their treatment preferences. Some have also suggested that ACP reduces moral distress among healthcare providers as well .
Effectiveness — In prospective studies and randomized trials, ACP has significantly improved multiple outcomes, particularly for patients with serious illness. These include:
●Higher rates of completion of ADs [1,11]
●Increased likelihood that clinicians and families understand and comply with a patient’s wishes [1,9,11,12]
●A reduction in hospitalization at the end of life [13-15]
●The receipt of less intensive treatments at the end of life 
●Increased utilization of hospice services 
●Increased likelihood that a patient will die in their preferred place [14,15].
Other important clinical outcomes include a higher satisfaction with the quality of care [1,15], which is likely due to improved communication between patient, family, and the patient’s clinicians resulting in shared decision-making; and better family preparation on what to expect during the dying process [1,13]. In addition, ACP results in a lower risk of stress, anxiety, and depression in surviving relatives of deceased persons [1,12], likely because most patients and families welcome these discussions [16,17], and feel better prepared to make decisions for their loved one. Finally, there are emerging data showing ACP reduces cost of end of life care [13,18], without increasing mortality .
In addition, the impact of ACP specifically on end of life care was evaluated in a 2014 systematic review that included 113 papers, consisting of predominantly observational studies . Among the main findings were that:
●ACP increased compliance with patients’ preferences in three out of six studies
●ACP increased quality of life for the patient and family in four out of four studies.
●The presence of a Do Not Resuscitate (DNR) order was associated with a decreased use of cardiopulmonary resuscitation (CPR, four out of five studies) and an increased use of hospice and palliative care services (six out of six studies).
●The presence of a Do Not Hospitalize (DNH) order was associated with a reduction in the rate of subsequent hospitalizations (eight of nine studies), a decrease in life-sustaining treatments (three of three studies), and an increase in palliative care and/or hospice services (five out of five studies).
This review also found that more complex ACP interventions (eg, those that included other components in addition to completing ADs) were found to have greater benefits compared to usual care . These included:
●Increased compliance with patients’ end of life wishes (three out of four studies)
●A decrease in subsequent hospitalization (three out of three studies)
●A decrease in in-hospital deaths (three studies) and ICU deaths (one study) and an increase in in-home deaths (two studies)
ADVANCE DIRECTIVES — Advance directives (ADs) are the documents a person completes while still in possession of decisional capacity about how treatment decisions should be made on her or his behalf in the event she or he loses the capacity to make such decisions. They are legal tools directing treatment decision-making and/or appoint surrogate decision makers. Although a component of advance care planning (ACP), an AD does not imply that ACP occurred, and thorough ACP does not always yield ADs (eg, if the patient does not voice any choices, or declines to have their choices recorded).
It is important to remember that ADs are not to be followed unless the patient has lost the ability to make decisions for himself. It is also important to remember that ADs can be revoked orally by the patient at any time (so long as he or she has maintained decisional capacity).
The primary instruments that serve as AD documents for purposes of ACP are the (see 'Specific documents for healthcare decision-making' below):
●Durable Power of Attorney for Health Care (DPAHC or Health Care Proxy) (See 'Durable Power of Attorney for Health Care' below.)
●Living Will (LW) (See 'Living Will' below.)
Other documents utilized in healthcare decision-making include (see 'Specific documents for healthcare decision-making' below):
●Combined Directives, which include components of a LW, a Values History, and an Instructional Directive, and also designate a surrogate decision maker. (See 'Combined directives' below.)
●Physician Orders for Life Sustaining Treatment (POLST). (See 'Physician Orders for Life Sustaining Treatment' below.)
Other instruments, although not commonly used, include the Instructional Directive and Values History. (See 'Other instruments' below.)
Because of the legal protections they confer to patients and families, our recommendation is to use a statutory DPAHC and LW whenever possible; these are freely available from electronic sources [20-22].
Historical perspective — The AD is a product of the patient and consumer rights movements of the 1960s and 1970s when, in response to the successes of intensive care, the United States Supreme Court established that patients have a constitutional right to refuse life-sustaining treatment. Over time, the Court decided that withdrawal of care was tantamount to refusal, and extended these rights to patients without decisional capacity through their health care surrogates.
In 1990, Congress passed the Patient Self-Determination Act (PSDA) incentivizing hospitals, nursing facilities, hospices, and health maintenance organizations to implement programs that provide all adult patients at the time of admission or enrollment with information about their rights under state laws regarding healthcare decision-making . As part of the PSDA, institutions must inform patients of the right to:
●Participate in and direct their own healthcare decisions
●Refuse medical or surgical treatment
●Prepare an AD
●Review information on the institutional policies governing these rights.
Importantly, the PSDA prohibited institutions from discriminating against patients who refuse to author ADs. (See "Legal aspects in palliative and end of life care".)
Use of advance directives — Contemporary studies report that approximately 70 percent of older Americans complete ADs prior to their death [9,13,24]. This is much higher than the rates reported a decade or more ago, which were 20 to 30 percent. The completion rates for ADs outside of the US are much lower with rates between 8 and 10 percent reported in Germany, the Netherlands, and the United Kingdom, respectively [25-27]. Even lower uptake of ADs has been reported in other nations such as Australia , Canada , Spain , Japan , and China .
Although the data are limited, the rates of documented ACP discussions lag behind the rates of completion of ADs. For example, in one prospective, longitudinal study, only 37 percent of patients with advanced cancer had an ACP conversation before death . In response, many places have implemented programs to improve access to ACP and ADs. As an example, the “Respecting Patient Choices” program  is integrating ACP into a variety of health services across Australia, such as acute hospitals , aged care facilities [14,32], and with primary care doctors .
Patient characteristics associated with a higher likelihood of completing an AD include [13,25,27,34,35]:
●History of a chronic disease, including AIDS and cancer
●High disease burden
●Higher socioeconomic status
●Prior knowledge about AD and end of life care options
●Higher level of education
Minority ethnic groups generally have low rates of ACP  and AD completion [34,35], with evidence that many AD documents as they currently exist are not culturally acceptable to them [4,34,37]. Many people, including those identifying with non-Western cultures, consider family and community as the source for treatment decisions, rather than the individual. Such people may prefer to identify a trusted family member, friend, or religious leader to make end of life decisions on their behalf rather than making decisions for themselves, even when they are still capable of doing so [34,37]. Moreover, there are wide variations in bereavement practices and beliefs about death and thus it is wise not to stereotype, but rather clarify a patient’s values, beliefs, and preferred role in decision-making with him/her directly [34,36].
Effectiveness — The impact of ADs on outcomes was studied in a 2014 systematic review . All of the studies included (n= 45) were observational. The outcomes varied, but all included medical treatment received, place of care, symptoms, and satisfaction. Among the major findings were that the presence of ADs were associated with:
●Decreased rate of hospitalization and the chances of dying in the hospital in two out of five studies
●Decreased use of life-sustaining treatment in 10 out of 22 studies
●Increased use of hospice or palliative care in five out of seven studies
These data suggest that both ADs and ACP can impact patient care. However, the results are not entirely consistent across studies, likely because of variation in study design and the populations examined. They also stress that well-designed randomized trials are still needed.
Stability — An important issue regarding ADs is whether or not they are actually stable as time passes. That is, whether the decisions one made at the time one stated his or her specific wishes apply at a later time, when decisions are required to be made.
Some data suggest that the completion of an AD is associated with stable preferences. This was shown in a 2014 systematic review of the literature that included 17 studies which reported that, with a change in health status, the following factors were associated with stability in the choices for end of life care :
●The presence of ADs rather than having none (in five of six studies)
●Recording of a preference at baseline to forego treatment rather than a desire to proceed with treatment (in three of three studies)
●Having a very mild medical condition (eg, mild stroke) or a very serious condition (eg, permanent coma), in which case congruence was towards or refusing treatment, respectively (in three studies)
On the other hand, changes in preferences for life-sustaining treatments appear to be common in hospitalized patients. In a review of 227,525 individuals over age 18 who were admitted to one of several Kaiser Permanente hospitals from the emergency department over a four-year period, 54, 21, and 3 percent of individuals aged 85 and over, 65 to 84, and younger than 65, respectively, had a request in place for limiting life-sustaining therapy at the time of admission . Of the participants who initially did not request limitations, 8.5 percent had new limitations added during the hospitalization, while of those with existing limitations on life-sustaining treatments, 7.6 percent had them reversed. New limitations were more likely, and reversals of prior limitations were least likely in the oldest individuals.
These data suggest that ADs are a dynamic process and should be revisited periodically when clinical decisions need to be made, particularly at the time of a hospital admission, regardless of patient age.
SPECIFIC DOCUMENTS FOR HEALTHCARE DECISION-MAKING — The sections below review the most popular advance directives (ADs): the Durable Power of Attorney for Health Care (DPAHC) and the Living Will (LW). Others, including the Instructional Directive and a Values History are rarely used and are not sanctioned documents, at least not in the US. Therefore, they are only mentioned briefly.
Durable Power of Attorney for Health Care — A Durable Power of Attorney for Health Care (DPAHC, Health Care Proxy, or Healthcare Power of Attorney) is a signed legal document authorizing another person to make medical decisions on the patient’s behalf in the event the patient loses decisional capacity . The application of DPAHCs began when it was recognized that Living Wills were limited in terms of the range of decisions they could cover . States began sanctioning DPAHCs in the 1980s and 1990s, and every state in the United States has a healthcare proxy statute as part of state law. Like the LW, a state-specific DPAHC reduces the likelihood that a third party can challenge the patient’s choice of surrogate .
However, there is no legal requirement that an individual choose a surrogate; in most jurisdictions, there is specific legislation authorizing which next of kin can make decisions in the absence of a formal designation . Nevertheless, selecting a surrogate helps clarify who the patient’s preferred surrogate would be . Ideally, the process of choosing a surrogate would be the occasion for discussions with that person about preferences for care in the event of an incapacitating, severe illness.
Living Will — The Living Will (LW) is a document summarizing a person’s preferences for future medical care. The typical LW takes effect if the person is terminally ill without chance of recovery, and outlines the desire to withhold heroic measures. Clinicians are strongly encouraged to be familiar with the laws governing LW in the areas in which they practice; an on-line site offers downloadable documents that are state specific.
Typically, the LW addresses resuscitation and life support; however, a thorough LW may cover patients’ preferences regarding hospitalization, pain control, and specific treatments he or she may require in the future (eg, chemotherapy for cancer, implantable defibrillator for congestive heart failure, tube feeds for dementia, dialysis for renal failure, ventilation for respiratory disease, etc).
The LW gives a general sense of the patient’s wishes, and can be modified by the patient to include specific interventions such as cardiopulmonary resuscitation, ventilatory support, or enteral feeding. However, LWs cannot cover all possibilities and are applicable to seriously ill, incapacitated patients only. While studies show that the preferences voiced in a LW cannot be extrapolated to other decisions, data indicate that friends and families of deceased patients still use the LW to guide end of life decision-making .
The disparity between ADs and clinical decision-making was illustrated in a survey of physicians using six hypothetical clinical scenarios. Cases contained an explicit AD with a potential conflict between the directive and prognosis, wishes of family/friends, or quality of life (QOL). Physicians’ choices differed from the patients’ stated ADs in 65 percent of cases, suggesting that they viewed the AD as only part of the information needed to make treatment decisions .
Combined directives — Increasingly, advance care planning (ACP) documents are being developed that include components of the Living Will, the Values History, and the Instructional Directive, while also designating a surrogate decision maker. One example of this, known as “Five Wishes,” combines the LW with the DPAHC . As with other AD documents, clinicians are encouraged to see if combined directives meet the statutory requirements of the state in which they practice.
Physician Orders for Life Sustaining Treatment — ACP is most effective when it is part of a coordinated effort that can be used across the continuity of possible care settings by paramedics, in hospitals, and in residential care facilities, such as nursing homes. A model initiative for such a directive is the Physician Orders for Life Sustaining Treatment (POLST), which delineates what specific care should be administered or withheld at the present time for a specific patient, as directed by a physician. Because these are considered medical orders, signed by a physician, they are “portable” in states where POLST programs have been legislatively established (40 states as of October 2016) . This means that where they can be applied, all healthcare facilities and emergency service providers in the region have agreed to recognize and abide by them, regardless of where it was first signed. POLST is particularly relevant to patients expected to transition from one healthcare setting to another.
However, the process of creating and documenting POLST orders as a tool to record conversations regarding goals of care is not sufficient to ensure that a patient’s wishes will be honored. The creation of local systems to ensure that health care professionals are aware of the directives and that providers of emergency medical services are able to honor these wishes is equally important .
The POLST website (www.POLST.org) has sample downloadable forms, educational materials, descriptions of the core elements of a POLST paradigm program, and information on how to build the coalition of health care professionals necessary to start such a program . In Oregon, the first state to adopt POLST, a study examining 58,000 deaths in 2010 and 2011 showed that 31 percent of decedents had a POLST form. Decedents whose POLST requested aggressive care or limited care were 9.7 and 4.0 times more likely to die in the hospital than those whose POLSTs requested “comfort measures only” . In a three-state study of 1711 residents of 90 nursing homes, residents with POLST forms were more likely to have treatment preferences documented as medical orders than those who did not, and POLST orders restricting medical interventions were associated with less use of life-sustaining treatments . (See "Palliative care: Nursing home" and "Medical care in skilled nursing facilities (SNFs) in the United States", section on 'Advance care planning'.)
While the full effect of POLST programs on ACP conversations and end of life decision-making has yet to be understood , POLST programs fill an important gap where other documents (eg, out of hospital DNR orders) leave patients vulnerable to unwanted resuscitation and hospitalization.
In Canada, an adapted version of POLST (Medical Orders for Scope of Treatment [MOST]) is another tool for ACP.
Other instruments — There are other tools for patients to use as part of ACP. However, these are infrequently used and have not undergone legal scrutiny in the US. While we mention these in order to provide a complete picture of ACP for the reader, every attempt should be made for patients to complete state sanctioned documents.
●Instructional Directives – Instructional Directives have been proposed in an attempt to avoid the limitations of the first LW [15,51]. One such instrument, the Medical Directive, asks patients to decide in advance which of a dozen possible interventions they would favor in the event of any of four potential scenarios :
•Coma with virtually no chance of recovery
•Coma with a small chance of recovery, probably to an impaired state
•Advanced dementia plus a terminal illness
The problem with such a directive is that despite its detail, it does not address the most common situations in the final years of life in which consideration might be given to limitation of treatment, such as moderate dementia or physical frailty. In addition, because there is no discussion of the goal of the interventions, the directive does not allow the individual to distinguish between short-term use of an intervention for a potentially reversible illness, and long-term treatment for a chronic condition. Finally, it is a formidable document which may overwhelm or intimidate older and/or impaired populations.
●Values History – The Values History seeks to ascertain which facets of life are most important to a given individual in the hope that this will help define how they wish to die (table 1). In particular, the questionnaire asks patients to state their religious background, their views on dependency, and attitudes towards physicians . However, it is not clear whether the document is useful to physicians at the bedside.
Outside of the United States, several alternative approaches to ACP have been introduced in the United Kingdom, including the Universal Form of Treatment Options, Treatment Escalation Plans, Unwell and Potentially Deteriorating Patient plan, and “Deciding Right” .
LEGAL CONSIDERATIONS — Caring for patients is a challenging task that requires not only a holistic view of the patient, but also understanding the family, social, legal, economic, and institutional circumstances surrounding them, especially as they approach end of life. Unfortunately, there are many myths and misconceptions about what may or may not be legal in this setting . Understanding the legal aspects of end of life care will give the practicing clinician the confidence and freedom to act reasonably. This topic is discussed in detail separately. (See "Legal aspects in palliative and end of life care".)
ETHICAL ISSUES — Ethical issues associated with advance care planning (ACP) and the completion of advance directives (ADs) often arise because of concerns about how much and what kind of care makes sense for someone with a poor prognosis at the end of life. It may stem from conflict between clinicians and family members over what constitutes appropriate care and quality of life. The ethical issues that may arise with regard to ACP and AD are discussed separately. (See "Ethical issues in palliative care".)
A PRACTICAL APPROACH TO ACP — For many patients, perhaps the best time for advance care planning (ACP) is when the patient is at a routine outpatient visit with a trusted provider, when there is time for non-pressured deliberation. This may be especially relevant if there has been a recent hospital admission, or a change in medical status. However, people may choose to defer discussions until a later time in their illness trajectory, or until an acute situation occurs. Sometimes there are situations when decision-making cannot be postponed (eg, when the patient is acutely at risk for losing decisional capacity or needing resuscitation); under such circumstances, it helps to tell the patient that you would normally allow for more time to make decisions, but that the current circumstances do not allow it.
For hospitalized patients, timing of decision-making discussions (particularly around do not resuscitate [DNR] orders) can be difficult for both the patient and the clinical team. However, some guidance is offered through a 2014 systematic review of studies that evaluated strategies around these conversations . Two major themes associated with improvement in decision-making around cardiopulmonary resuscitation (CPR) specifically were:
●Structuring of the decision making process at the time of admission (eg, providing context to the decision for cardiopulmonary resuscitation [CPR] in terms of the overall objectives of treatment)
●Engaging patients in discussion if/when the patient may require other treatments or when he or she experiences clinical deterioration
In contrast, the use of educational materials aimed solely at the patient and/or clinician did not appear to be effective.
Assessing decision-making capacity — The physician must assess the patient’s decision-making capacity before concluding that he or she cannot speak for himself or herself. It is important to note that decision making capacity is task specific. People with mild dementia, for example, may understand the issues related to ACP, and be able to participate even if they no longer have the ability to balance their checkbook or live independently. Conversely, superficially intact patients may not be able to understand the pros and cons of a sophisticated intervention that may be used in a future emergency.
An assessment of “decision-making capacity” can and should be performed by the primary physician; determining decisional capacity requires neither legal intervention nor psychiatric expertise. On the other hand, “decisional competence” is judicially determined and involves evaluation of the capacity of a person to make medical and non-medical decisions.
There is no singular “test” of decision-making capacity. The Mini-Mental Status Examination or other quantitative measures of cognitive function do not predict the ability to make medical decisions, except in cases of extreme impairment . (See "The mental status examination in adults", section on 'Brief cognitive assessments'.)
An approach to the assessment of decision making capacity is covered in detail separately, and summarized in the table (table 2). (See "Assessment of decision-making capacity in adults", section on 'How to assess capacity'.)
Patients deemed capable of participating in decisions about their care generally should be involved directly in any discussions of ACP or advance directives (ADs). An exception may occur in those with decompensated Major Depressive Disorder. Patients who are depressed can meet the criteria for adequate decision-making capacity, but their preferences may be clouded by their mood disorder . Overriding the wishes of a seemingly capable patient who is depressed is a serious matter and is one situation in which psychiatric involvement should be sought. ACP decisions should be deferred if possible until depression has been adequately treated; if time pressures dictate the need to make a prompt choice, the physician should seek surrogate input. (See 'Surrogate decision makers' below.)
An exception may also occur for members of ethnic groups for whom decision-making is customarily delegated to other family members ; however, some data suggest that most patients (at least those who have cancer) want to be informed if their illness is terminal . Physicians should be sensitive to ethnic diversity in attitudes toward autonomy and should ask patients directly whether they wish to be involved or how they would like decisions to be made.
Facilitating the ACP — ACP usually takes place in the context of a semi-structured discussion, although the exact order of an ACP conversation will vary depending on the patient, the physician, and the way a conversation progresses. A number of processes to facilitate ACP have been suggested; steps that can be taken are summarized below and in a table (table 3):
●Obtain permission – Invite the patient to discuss their current condition and “future medical care.” An ACP conversation is often an emotional one, even when the circumstances are ideal; thus, providers should ask for permission to have such discussions.
●Gauge whether there should be others involved – Recognize the patient’s preferences about who should be involved. Providers should ask the patient how active a role s/he wants to play in the planning process. When appropriate, the clinician should encourage the patient to invite family to sit in on the discussion. It is usually very helpful if the surrogate decision maker is involved in the discussion.
●Establish the baseline – Assess the patient’s knowledge about his or her current health. Knowing the patient’s level of knowledge at baseline will help you understand what kind of information the patient will need to make an informed choice about future medical care.
Many patients may have misconceptions about their health. If the clinician identifies that there are gaps between what the patient “says” he knows and what he “should” know, it is important to get a sense of how much information he or she is seeking. Some patients prefer not to know the full extent of their condition and prefer that it be discussed with trusted family members instead.
●Provide specific information – Provide the patient with unambiguous information about his current health status and what choices he or she may face in the future (given their known burden of disease). Make the information directly relevant to the patient so as to increase their engagement in the process.
●Introduce the dilemmas at hand – Ask the patient if he or she has ever thought about the kind of medical care they would like to receive. Many patients, especially older adults, will know friends or family who needed life support or cardiopulmonary resuscitation (CPR) and these experiences can be utilized as a way to introduce a conversation about the patient's own end of life wishes.
●Explore values and beliefs – Clinicians should try to understand the person’s values and beliefs (table 1), what it means to “live well,” and what goals he or she seeks to advance with medical treatment . However, many people have never had to think about life as an abstract concept and may not have a ready answer. It can be helpful to ask the person about what sorts of things they like to do.
●Elicit ACP preferences – Ask the patient what he or she would want regarding issues like CPR, the utilization of “life support” (eg, mechanical ventilation, tube feeding, dialysis), inpatient hospitalization, and place of death.
Encouraging the patient to be specific; if she or he is interested in a specific treatment, ask her or him under which circumstances she or he might reconsider that choice.
For the patient who is interested in trials of life support, ask her or him to specify how long a trial should be, and what criteria should be used to decide to stop the treatment.
●Identify a health care surrogate – Ask the patient to name her or his preferred surrogate decision maker. When a patient appoints more than one surrogate, ask her or him to specify who will be the primary and how disagreements between surrogates should be reconciled. It is also useful to discuss how much leeway the patient would like her or his decision maker to have. For example, does he or she want the surrogate to follow her or his medical treatment wishes exactly, or to use her or his own judgment?
●Inform the patient about what would be expected from a surrogate acting on her or his behalf. Many patients do not realize the importance of preparing their surrogate for the difficult decisions she or he may face.
●Disseminate their choices – Encourage the patient to disseminate her or his preferences, including with her or his family, and especially, with the chosen surrogate decision maker.
●Document their preferences – The patient should document her or his preferences in writing and on a statutory AD. By documenting their preferences in writing, patients have a greater chance of ensuring their wishes are followed, especially in circumstances where providers and families may disagree on the course of care.
●Review regularly – Review the patient’s preferences on a regular basis and update documentation. Patients change their minds, particularly as illness progresses and especially after experiences in the hospital. For this reason, advance care plans should be reviewed periodically and whenever the patient has a change in health status. Patients can revise their care plan and ADs at any time, and both can be revoked with a simple oral declaration. However, if the plan is revoked, it is a good idea to ensure old documents are removed and new documents are made readily available to their family, doctors, and health care facilities.
An example of another approach is represented by the Respecting Choices program, which incorporates a staged approach to ACP, based on a person’s state of health . The “stages of planning” have three distinct and focused “steps.”
●The first step is for the clinician to introduce ACP to patients and encourage nomination of a surrogate. It is appropriate for all adults no matter their health status.
●The second step is to suggest ACP to patients with symptomatic chronic progressive illness. The aims are to assist patients and their surrogates to understand treatment benefit, burdens, and alternatives and develop a more detailed advance care plan.
●The final step is focused on patients most likely to die within the next year and focuses on specific treatments such as cardiopulmonary resuscitation (CPR), ventilation, artificial nutrition and hydration, and comfort care options. The aim is to develop clear and transferable medical treatment orders.
Surrogate decision makers — A surrogate decision maker should be identified for all patients if possible because lost decisional capacity is common .
Physicians have traditionally acted paternalistically on behalf of their patients; however, contemporary biomedical ethics hold that physicians should not take on this role alone. This thinking is based in part upon studies demonstrating that physicians do not know what their intact patients want done in the event of serious illness . In addition, physicians systematically underestimate their patients’ quality of life and are thereby less likely to favor life-sustaining treatments than are patients themselves .
A surrogate serves as the patient’s representative and ideally should be chosen by the patient for this role when she or he is able to make such a choice. The next of kin customarily serves this role in the absence of a formally designated surrogate. The expectation is that the surrogate will make health care decisions based upon substituted judgment, by considering what the patient would want had she or he decisional capacity. If the surrogate cannot decide what the patient would choose, then the decision should be based upon the best interests of the patient, which is defined as “what most people in that condition would want” .
Surrogates may not accurately predict what treatment the patient would want. As an example, a systematic review of 16 studies involving 2595 surrogate-patient pairs found that surrogates predicted preferences with a 68 percent accuracy and that neither patient designation of the surrogate nor prior discussion of preferences improved accuracy . Nonetheless, use of surrogates is the best available approach to decision-making in the presence of patient incapacity.
Formal guardianship is rarely necessary. A guardian is assigned by a judge in a court of law based upon a legal determination that the patient is decisionally incompetent. In most cases, guardianship proceedings are initiated when a physician is faced with a major treatment dilemma in a patient who is incapable of making decisions and has no health care surrogate or next of kin. Guardianship is also occasionally necessary if there are multiple first-degree relatives who cannot agree on an approach to medical care despite mediation by the health care team, or if the next of kin is clearly acting in his own self-interest rather than the best interest of the patient .
Legal issues surrounding surrogate decision makers are addressed in detail separately. (See "Legal aspects in palliative and end of life care", section on 'Surrogate decision makers'.)
Documenting the ACP and any ADs — Following any conversation of ACP, it is critical that providers document the content of the discussion, including any choices made and explanations thereof. ADs should be completed whenever possible and health care systems should ensure the ADs can be quickly filed and immediately available when needed. We advise that systems adopt a universal identification system to flag ADs to ensure providers can easily locate ADs in cases of patient emergencies.
If a patient expresses wishes against resuscitation during an ACP discussion, it is important that they be followed by a physician’s order (ie, Do-Not-Resuscitate [DNR] or Do-Not-Attempt-Resuscitation [DNAR] orders) regarding code status, as ADs alone are insufficient to prevent a patient from being resuscitated. Two considerations are required:
●In-hospital DNR – When a hospitalized patient does not want cardiopulmonary resuscitation under any circumstances, the clinician is obligated to write a DNR order in the medical record as soon as possible; nursing staff and code teams can withhold CPR only when a clinician’s order is in place.
●Out-of-hospital DNR – To prevent unwanted resuscitations of terminally ill patients living at home or in hospice in the US, 42 states have developed state-wide protocols for “out-of-hospital DNR.” Many require specific forms to be completed and signed by both the patient (or surrogate) and the clinician of record. Some require use of a specially-designed bracelet or a specific form to be kept near the patient. In regions where POLST programs have been established, the POLST form replaces the out-of-hospital DNR. In other jurisdictions, other specific forms may need to be completed (eg, the “Refusal of Treatment Certificate” in Victoria, Australia ).
AD registries — AD registries were created to address the problem that many ADs are not available when clinicians need them. Several US states offer electronic registries for ADs. Commercial registries (eg, US Living Will Registry) are also available. However, it is important to recognize that registries have their limitations, mostly related to how rapidly registries are updated and how quickly changes become accessible to clinicians who use the registry.
INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, “The Basics” and “Beyond the Basics.” The Basics patient education pieces are written in plain language, at the 5th to 6th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10th to 12th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.
Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on “patient info” and the keyword(s) of interest.)
SUMMARY AND RECOMMENDATIONS
●Advance care planning (ACP) is an ongoing process in which patients, their families, and their healthcare providers reflect on the patient’s goals, values, and beliefs, discuss how they should inform current and future medical care, and ultimately, use this information to accurately document the patients’ future health care choices. (See 'Introduction' above.)
●Clinicians bear the responsibility of informing patients about their prognosis, exploring treatment options, and helping formulate preferences based upon a risk benefit analysis and their values, whenever circumstances allow. (See 'Advance Care Planning' above.)
●ACP has significantly improved multiple outcomes, particularly for patients with serious illness, including rates of completion of advance directives (AD), likelihood that clinicians and families understand and comply with a patient’s wishes, hospitalization at the end of life, use of intensive treatments at the end of life, enrollment in hospice, and a likelihood of dying in the preferred place. (See 'Effectiveness' above.)
●Advance directives (ADs) are the documents a person completes while still in possession of decisional capacity to ensure their values are reflected when considering how treatment decisions should be made on her or his behalf in the event she or he loses the capacity to make such decisions. The primary instruments that serve as AD documents are the Durable Power of Attorney for Health Care (DPAHC or Health Care Proxy) and the Living Will (LW). Given that preferences for life-sustaining therapy might change over time, ADs should periodically be revisited, particularly at times when there is a change in the person’s health or clinical decision making is needed. In these situations, one can refer to the previous conversation and decision to check in about whether wishes have changed, rather than starting the conversation anew. If the patient has different views, it is particularly important to inquire about the values that underlie his or her change in mind. (See 'Advance directives' above.)
●The physician must assess the patient’s decision-making capacity before concluding that the patient can or cannot speak for herself or himself. A surrogate decision maker should be identified for all patients, regardless of condition, because lost decisional capacity is common. (See 'Assessing decision-making capacity' above.)
●If a patient expresses wishes against resuscitation during an ACP discussion, it is important that they be followed by physician’s orders regarding code status, as ADs alone are insufficient to prevent a patient from being resuscitated. (See 'Documenting the ACP and any ADs' above.)
- Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340:c1345.
- Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med 2009; 76:276.
- Respecting Choices. http://www.gundersenhealth.org/respecting-choices (Accessed on August 15, 2013).
- Hickman SE, Hammes BJ, Moss AH, Tolle SW. Hope for the future: achieving the original intent of advance directives. Hastings Cent Rep 2005; Spec No:S26.
- Respecting Patient Choices. http://www.advancecareplanning.org.au (Accessed on February 24, 2014).
- Danis M, Patrick DL, Southerland LI, Green ML. Patients' and families' preferences for medical intensive care. JAMA 1988; 260:797.
- Garrett JM, Harris RP, Norburn JK, et al. Life-sustaining treatments during terminal illness: who wants what? J Gen Intern Med 1993; 8:361.
- Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med 2010; 153:256.
- Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med 2010; 362:1211.
- Elpern EH, Covert B, Kleinpell R. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care 2005; 14:523.
- Hammes BJ, Rooney BL. Death and end-of-life planning in one midwestern community. Arch Intern Med 1998; 158:383.
- Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300:1665.
- Teno JM, Gruneir A, Schwartz Z, et al. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc 2007; 55:189.
- Silvester W, Blackhall LJ, Stickland E. Final Evaluation Report of the Community Implementation of the Respecting Patient Choices Program. http://www.health.gov.au/internet/nhhrc/publishing.nsf/Content/018-wilsiletal/$FILE/018%20William%20Silvester%20et%20al%20Submission%20B.pdf (Accessed on December 31, 2012).
- Molloy DW, Guyatt GH, Russo R, et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000; 283:1437.
- Janssen DJ, Engelberg RA, Wouters EF, Curtis JR. Advance care planning for patients with COPD: past, present and future. Patient Educ Couns 2012; 86:19.
- Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006; 333:886.
- Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 2009; 169:480.
- Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28:1000.
- Caring Connections http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1 (Accessed on March 03, 2014).
- Advance Care Planning Australia http://advancecareplanning.org.au/ (Accessed on March 03, 2014).
- Speak Up Campaign by the Canadian Hospice Palliative Care Association http://advancecareplanning.ca/ (Accessed on March 03, 2014).
- Omnibus Budget Reconciliation Act of 1990, Public Law No. 101-508, §4206 & 4751 (1990).
- Silveira MJ, Wiitala W, Piette J. Advance directive completion by elderly Americans: a decade of change. J Am Geriatr Soc 2014; 62:706.
- Evans N, Bausewein C, Meñaca A, et al. A critical review of advance directives in Germany: attitudes, use and healthcare professionals' compliance. Patient Educ Couns 2012; 87:277.
- van Wijmen MP, Rurup ML, Pasman HR, et al. Advance directives in the Netherlands: an empirical contribution to the exploration of a cross-cultural perspective on advance directives. Bioethics 2010; 24:118.
- Aw D, Hayhoe B, Smajdor A, et al. Advance care planning and the older patient. QJM 2012; 105:225.
- Rhee JJ, Zwar NA, Kemp LA. Uptake and implementation of Advance Care Planning in Australia: findings of key informant interviews. Aust Health Rev 2012; 36:98.
- IPSOS-Reid. National Ipsos-Reid poll indicates majority of Canadians haven’t talked about their wishes for care. http://www.advancecareplanning.ca/news-room/national-ipsos-reid-poll-indicates-majority-of-canadians-haven%E2%80%99t-talked-about-their-wishes-for-care.aspx (Accessed on August 15, 2013).
- Simon-Lorda P, Tamayo-Velázquez MI, Barrio-Cantalejo IM. Advance directives in Spain. Perspectives from a medical bioethicist approach. Bioethics 2008; 22:346.
- Zheng RJ, Fu Y, Xiang QF, et al. Knowledge, attitudes, and influencing factors of cancer patients toward approving advance directives in China. Support Care Cancer 2016; 24:4097.
- Silvester W, Fullam RF, Parslow RA, et al. Quality of advance care planning policy and practice in residential aged care facilities in Australia. BMJ Support Palliat Care 2012.
- Victorian-Quality-Council. The Next Steps: Having Conversations on Life and Death project. http://www.health.vic.gov.au/qualitycouncil/activities/training.htm (Accessed on January 05, 2013).
- Bullock K. The influence of culture on end-of-life decision making. J Soc Work End Life Palliat Care 2011; 7:83.
- Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist 2005; 45:634.
- Johnstone MJ, Kanitsaki O. Ethics and advance care planning in a culturally diverse society. J Transcult Nurs 2009; 20:405.
- Blackhall LJ, Frank G, Murphy ST, et al. Ethnicity and attitudes towards life sustaining technology. Soc Sci Med 1999; 48:1779.
- Auriemma CL, Nguyen CA, Bronheim R, et al. Stability of end-of-life preferences: a systematic review of the evidence. JAMA Intern Med 2014; 174:1085.
- Kim YS, Escobar GJ, Halpern SD, et al. The Natural History of Changes in Preferences for Life-Sustaining Treatments and Implications for Inpatient Mortality in Younger and Older Hospitalized Adults. J Am Geriatr Soc 2016; 64:981.
- Sabatino CP. The evolution of health care advance planning law and policy. Milbank Q 2010; 88:211.
- Sabatino C. Health care power of attorney and combined advance directive legislation. American Bar Association, December 2009 http://new.abanet.org/aging/ublicDocuments/PCPHA-CHT%2009%20corrected.pdf (Accessed on April 11, 2011).
- Lo B, Rouse F, Dornbrand L. Family decision making on trial. Who decides for incompetent patients? N Engl J Med 1990; 322:1228.
- Hardin SB, Yusufaly YA. Difficult end-of-life treatment decisions: do other factors trump advance directives? Arch Intern Med 2004; 164:1531.
- Five Wishes. http://www.agingwithdignity.org (Accessed on December 29, 2012).
- Braun UK. Experiences with POLST: Opportunities for Improving Advance Care Planning : Editorial & Comment on: "Use of Physician Orders for Life-Sustaining Treatment among California Nursing Home Residents". J Gen Intern Med 2016; 31:1111.
- Tolle SW, Teno JM. Lessons from Oregon in Embracing Complexity in End-of-Life Care. N Engl J Med 2017; 376:1078.
- Physician Orders for Life-Sustaining Treatment Paradigm available online at www.polst.org (Accessed on March 01, 2011).
- Fromme EK, Zive D, Schmidt TA, et al. Association between Physician Orders for Life-Sustaining Treatment for Scope of Treatment and in-hospital death in Oregon. J Am Geriatr Soc 2014; 62:1246.
- Hickman SE, Nelson CA, Perrin NA, et al. A comparison of methods to communicate treatment preferences in nursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J Am Geriatr Soc 2010; 58:1241.
- Hickman SE, Keevern E, Hammes BJ. Use of the physician orders for life-sustaining treatment program in the clinical setting: a systematic review of the literature. J Am Geriatr Soc 2015; 63:341.
- Coppola KM, Ditto PH, Danks JH, Smucker WD. Accuracy of primary care and hospital-based physicians' predictions of elderly outpatients' treatment preferences with and without advance directives. Arch Intern Med 2001; 161:431.
- Emanuel LL, Emanuel EJ. The Medical Directive. A new comprehensive advance care document. JAMA 1989; 261:3288.
- Lambert P, Gibson JM, Nathanson P. The values history: an innovation in surrogate medical decision-making. Law Med Health Care 1990; 18:202.
- Fritz Z, Slowther AM, Perkins GD. Resuscitation policy should focus on the patient, not the decision. BMJ 2017; 356:j813.
- Meisel A, Snyder L, Quill T, American College of Physicians--American Society of Internal Medicine End-of-Life Care Consensus Panel. Seven legal barriers to end-of-life care: myths, realities, and grains of truth. JAMA 2000; 284:2495.
- Field RA, Fritz Z, Baker A, et al. Systematic review of interventions to improve appropriate use and outcomes associated with do-not-attempt-cardiopulmonary-resuscitation decisions. Resuscitation 2014; 85:1418.
- Marson DC, Hawkins L, McInturff B, Harrell LE. Cognitive models that predict physician judgments of capacity to consent in mild Alzheimer's disease. J Am Geriatr Soc 1997; 45:458.
- Blank K, Robison J, Doherty E, et al. Life-sustaining treatment and assisted death choices in depressed older patients. J Am Geriatr Soc 2001; 49:153.
- Hornung CA, Eleazer GP, Strothers HS 3rd, et al. Ethnicity and decision-makers in a group of frail older people. J Am Geriatr Soc 1998; 46:280.
- Yun YH, Kwon YC, Lee MK, et al. Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness. J Clin Oncol 2010; 28:1950.
- Moore CD, Reynolds AM. Clinical update: communication issues and advance care planning. Semin Oncol Nurs 2013; 29:e1.
- Respecting choices. http://www.gundersenhealth.org/respecting-choices (Accessed on February 05, 2014).
- Buchanan AE, Brock DW. Deciding for others: The ethics of surrogate decision making, Cambridge University Press, Cambridge 1989.
- Seckler AB, Meier DE, Mulvihill M, Paris BE. Substituted judgment: how accurate are proxy predictions? Ann Intern Med 1991; 115:92.
- Uhlmann RF, Pearlman RA. Perceived quality of life and preferences for life-sustaining treatment in older adults. Arch Intern Med 1991; 151:495.
- Emanuel EJ, Emanuel LL. Proxy decision making for incompetent patients. An ethical and empirical analysis. JAMA 1992; 267:2067.
- Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 2006; 166:493.
- Lynn J. Conflicts of interest in medical decision-making. J Am Geriatr Soc 1988; 36:945.
- Victorian. Medical Treatment Act. http://www.health.vic.gov.au/mta (Accessed on August 15, 2013).