INTRODUCTION — Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care [1]. The goal of ACP is to help ensure that people receive medical care that is consistent with their values, goals, and preferences [1]. The timing and nature of ACP may vary depending on whether the person is healthy, has mild to moderate chronic illness, or has an advanced life-threatening illness and is 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 or other decision-makers, 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 in the United States" and "Discussing goals of care".)
INTERNATIONAL APPLICABILITY — The information presented in this topic relates primarily to the United States. Internationally, there is considerable variation in the terminology, documentation and legislative frameworks related to advance care planning (ACP), and providing comprehensive information about ACP in all regions of the world is beyond the scope of this discussion. We advise clinicians to familiarize themselves with the relevant terminology and protocols in their region. However, although there may be local variation, many of the concepts discussed in this topic are globally applicable. In addition, where possible, this topic will provide comparative information about the implementation of ACP in various international settings.
ADVANCE CARE PLANNING — Perhaps the most wrenching question patients and families or other loved ones face is “which medical treatment is right for me?”. The answer to this question depends upon the patient and their own goals, values, and preferences, and it cannot be accurately predicted by the clinician, the family, or other decision-makers [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 continual process where a patient’s current condition and prognosis are reviewed, their preferences for information regarding their illness are elicited, and likely medical dilemmas are presented and options discussed [8]. In an ideal ACP discussion, clinicians, the patient, and their loved ones think through particular approaches to follow if (or when) the patient’s health declines. It has been suggested that the main goal of ACP should be preparing the patient and surrogate decision-makers to participate with clinicians in making the best possible “in the moment” decisions [8]; however, respecting patient autonomy, improving quality of care, strengthening relationships, and reducing overtreatment are also common goals [9]. The ACP process is iterative and ideally occurs within the context of an existing and medical relationship.
Unfortunately, many patients face medical decision-making at a time they lack the capacity to make decisions for themselves [10]. In such cases, surrogates must step in to make decisions that they feel are the decisions the person would have made for themselves or, if this is unknown, 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.)
ACP paradigms not only ensure that doctors, patients, and families or other decision-makers talk about future care but also that the content of those conversations is documented in a fashion that travels with the patient as they move across health care settings [4].
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 [DNR] orders) reflecting a person’s treatment preferences and current medical condition. 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), where patients document their preferences for medical care and appoint a 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 “Health Care Proxy Designations”) document 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 their 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 clinician, ideally it should be a health care 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 [11]. 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.
Interventions — Several ACP interventions have been examined, including facilitated discussions, videos, multimedia, written guides, and clinician training. A review of the literature since 2010 suggests that most interventions, regardless of the mode, improve patient and surrogate satisfaction with communication and care and decrease surrogate/clinician distress [12].
Outcomes — The effectiveness of ACP is a topic of discussion [13]. While there have been hundreds of ACP studies, there has been considerable heterogeneity in what constitutes ACP, the quality of the evidence, and the outcomes measured. These considerations have significantly limited the ability to form definitive conclusions regarding effectiveness [14]. Thanks to a Delphi panel convened in 2018, there are now standardized definitions for what is considered ACP and recommendations for the outcomes that should be measured [15], which include goal-concordant care, surrogate designation, surrogate documentation, discussions with surrogates, and documentation of wishes. To the degree that future studies adopt these conventions, there will be increased ability to synthesize the data and make conclusions.
Some studies have shown that ACP significantly improves multiple outcomes, particularly for patients with serious illness. These include:
●Higher rates of completion of ADs [11,16]
●Reduced hospitalization at the end of life [17,18]
●Fewer intensive treatments at the end of life [17]
●Increased utilization of hospice services [17]
●Increased likelihood that a patient will die in their preferred place [18]
●Higher satisfaction with the quality of care [11,18], which is likely due to improved communication between patient, family or other decision-makers, and the patient’s clinicians resulting in shared decision-making, and better preparation on what to expect during the dying process [11,17]
●Lower stress, anxiety, and depression in surviving relatives of deceased persons [11,19], likely because most patients and families/loved ones welcome these discussions [20,21] and feel better prepared to make decisions for their loved one
●Reduced cost of end-of-life care [17,22] without increasing mortality [22]
However, a 2018 review of 80 systematic reviews (including 1600 original articles) of mostly moderate quality found limited evidence that ACP influences the choices made at the end of life or improves the chances of goal-concordant care [23]. A 2020 systematic review focusing only on randomized control trials (n = 69, of which 94 percent rated high quality) found that 88 percent of studies showed positive impact upon patient-surrogate/clinician congruence but not goal concordance. They found that 100 percent of studies had a positive impact on patients/surrogate/clinician satisfaction with communication, and 75 percent had a positive impact on surrogate satisfaction with patients' care [12].
There is reason to believe that when interventions are standardized and outcomes are validated and universal, the evidence will become more convincing in favor of ACP. Two well-known ACP programs suggesting this are:
●Respecting Choices – A systematic review of 16 studies examining “Respecting Choices,” a commercial program of ACP adopted by many health systems in the United States as well as Australia, concluded that there is a “high level of evidence” that Respecting Choices increases patient-surrogate congruence in White populations [24].
●Prepare for Your Care – The PREPARE website is a patient-centered ACP portal designed to motivate and prepare patients to discuss their care preferences with loved ones. Evidence suggests that the PREPARE intervention increases ACP engagement and new ACP documentation. For example, in a study including 414 veterans (age 60 with chronic or serious illness and recent health care involvement), the PREPARE intervention resulted in higher rates of ACP documentation compared with usual advance directive engagement (35 versus 25 percent, adjusted odds ratio [OR] 1.61, 95% CI 1.03-2.51) at six months [25]. The authors found similar results in a follow-up study with an urban population of 986 non-veterans [26].
Engagement — Despite the proven benefits of ACP, few patients engage in the process. For example, in a study of cancer patients in Australia, while most perceived ACP as important, few had discussed end-of-life wishes with a doctor (11 percent), recorded their wishes (15 percent), chosen a surrogate (28 percent), discussed life expectancy (30 percent), or discussed end-of-life wishes with family (30 percent) [27]. A systematic review of qualitative literature suggests that patients are more willing to engage in ACP when they are “ready and open” to discussing their mortality [28].
In the United States, the ability to bill for ACP services through Medicare has increased rates of ACP, but prevalence remains below 7.5 percent [29]. One study suggested that administrative complications limit the impact of reimbursement for ACP [30].
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 their behalf in the event they lose the capacity to make such decisions. They are legal tools directing treatment decision-making and/or appointing 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 only acted upon when the patient has lost the ability to make decisions for themself. It is also important to remember that ADs can be revoked orally or in writing by the patient at any time (so long as they have maintained decisional capacity).
The primary instruments that serve as AD documents for purposes of ACP are the (see 'Specific documents for health care decision-making' below):
●Durable Power of Attorney for Health Care (DPAHC, or Health Care Proxy Designations) (see 'Durable Power of Attorney for Health Care' below)
●Living Will (LW) (see 'Living Will' below)
Other documents utilized in health care decision-making include (see 'Specific documents for health care decision-making' below):
●Combined Directives, which include components of an 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 or other decision-makers, our recommendation is to use a statutory DPAHC and LW whenever possible; these are freely available from electronic sources [5,31,32].
Use of advance directives — Data suggest that most people do not complete an AD. In a systematic review of 150 studies conducted in the United States and published from 2011 to 2016 (totaling 795,909 people), 37 percent of persons had completed an AD [33]. Completion rates are higher for older Americans; contemporary studies report that approximately 70 percent of older Americans complete ADs prior to their death [10,17,34].
This is similar to an Australian study which showed that approximately 30 percent of older Australians have an ACP document available at the point of care [35].
The completion rates for ADs in other countries are generally much lower, with rates between 8 and 10 percent reported in Germany, the Netherlands, and the United Kingdom, respectively [36-38]. Even lower uptake of ADs has been reported in other nations such as Canada [39], Spain [40], Japan [36], and China [41].
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 [19]. In response, many health care systems have implemented programs to improve access to ACP and ADs. For example, the Advance Care Planning Australia program [5] is integrating ACP into a variety of health settings across Australia [11,42,43].
Patient characteristics associated with a higher likelihood of completing an AD include [17,35,36,38,44,45]:
●Older age
●White race
●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
●Higher levels of functional impairment
Some underrepresented racial/ethnic groups have low rates of ACP [46] and AD completion [44,45], with evidence that many AD documents are not culturally acceptable to them [4,44,47]. 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 [44,47]. 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 them directly [44,46].
Effectiveness — The impact of ADs on outcomes was studied in a 2014 systematic review [48]. 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 can impact patient care. However, the results are not entirely consistent across studies, likely because of variation in study design, outcomes measures, 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 their 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 [49]:
●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 [50]. 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 HEALTH CARE 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 United States. However, instructional directives and values-based advance care plans are increasingly being utilized in Australia [5].
Durable Power of Attorney for Health Care — A DPAHC (Health Care Proxy, or Health Care 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 [51]. The application of DPAHCs began when it was recognized that LWs were limited in terms of the range of decisions they could cover [51]. States began sanctioning DPAHCs in the 1980s and 1990s, and every state in the United States has a health care 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 [51].
However, there is no legal requirement that an individual choose a surrogate; in most jurisdictions, there is specific legislation authorizing which person can make decisions in the absence of a formal designation [52]. Nevertheless, selecting a surrogate helps clarify who the patient’s preferred surrogate would be [53]. 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 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.
Typically, the LW addresses resuscitation and life support; however, a thorough LW may cover patients’ preferences regarding hospitalization, pain control, and specific treatments they 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 (CPR), 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/loved ones of deceased patients still use the LW to guide end-of-life decision-making [10].
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. 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 [54].
Combined directives — Increasingly, advance care planning (ACP) documents are being developed that include components of the LW, 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 [55]. As with other AD documents, clinicians are encouraged to see if combined directives meet the statutory requirements of the jurisdiction in which they practice.
Physician Orders for Life-Sustaining Treatment — ACP may be 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 in the United States 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. POLST forms typically include orders regarding CPR and certain medical interventions (eg, hospitalization, ventilation, artificial nutrition) [56]. Because these are considered medical orders, signed by a physician, they are “portable.” POLST are increasingly common in those communities where they are available; they are completed on hundreds of thousands of older Americans each year [56-58].
POLST programs exist in nearly every state [59]. Many states have other names for POLST (eg, Medical Orders for Scope of Treatment, Clinician Orders for Life-Sustaining Treatment, State-Authorized Portable Orders). State POLST programs differ regarding signature requirements, patient limitations covered, terminology for surrogates, and treatments covered [60], all health care 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 health care setting to another. International jurisdictions, such as in some states in Australia and Canada, have also developed similar approaches, although the names of the documentation vary and include “Goals of Care” and “resuscitation orders.”
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 [61].
There is mounting evidence that POLST accomplish their intended purpose. A 2020 systematic review of 10 observational studies examining concordance between preferences in POLST and care received found 98 percent concordance between preferences for/against CPR and the actual delivery/withholding of resuscitation [62]. Concordance was over 90 percent for decisions regarding artificial nutrition and receipt of antibiotics as well.
While the full effect of POLST programs on ACP conversations and end-of-life decision-making has yet to be understood [63], POLST programs fill an important gap where other documents (eg, out of hospital DNR orders) leave patients vulnerable to unwanted resuscitation and hospitalization.
Other instruments — Many alternative guides for decision-making conversations and preferences exist, including some that are tailored to specific conditions. Clinicians should use those they feel are best suited to their practice; however, when it comes to documenting patients’ preferences with regards to surrogate and medical treatment, it is in their patients’ best interest that there be clear documentation of the content of conversation, decisions made, and rationale placed in the clinical record available for other providers to access.
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” [64].
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 [65]. One legal consideration in the United States is that the Patient Self-Determination Act states that institutions must inform patients of the right to:
●Participate in and direct their own health care decisions
●Refuse medical or surgical treatment
●Prepare an advance directive (AD)
●Review information on the institutional policies governing these rights
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 in the United States".)
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 or other decision-makers 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 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 [66]. 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 CPR in terms of the overall objectives of treatment)
●Engaging patients in discussion if/when the patient may require other treatments or when they experience clinical deterioration
By 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 clinician must assess the patient’s decision-making capacity before concluding that they cannot speak for themselves. It is important to note that decision-making capacity is task-specific [67]. 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. The subject of advance directives (ADs) in patients with dementia is discussed in detail elsewhere. (See "Care of patients with advanced dementia", section on 'Advance care planning'.)
An assessment of “decision-making capacity” can and should be performed by the primary clinician; 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 [68]. (See "The mental status examination in adults", section on 'Cognitive screening tests'.)
An approach to the assessment of decision-making capacity is covered in detail separately and summarized in the table (table 1). (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 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 [69]. 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 clinician should seek surrogate input. (See 'Surrogate decision-makers' below.)
Even when patients are not able to satisfy all the conditions of decision-making capacity, their input regarding their goals of care and their cooperation with treatment plans should be sought. There may be benefits to engaging patients with intellectual disabilities in ACP, but this population is often excluded from studies that examine the benefits of ACP, and little is understood in this area [70].
An exception may also occur for members of ethnic groups for whom decision-making is customarily delegated to other family members [71]; however, some data suggest that most patients (at least those who have cancer) want to be informed if their illness is terminal [72]. Clinicians 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 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 clinician, and the way a conversation progresses. A number of processes to facilitate ACP have been suggested; the following is based upon the process recommended by Vital Talk [73] (table 2):
●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 they want to play in the planning process. When appropriate, the clinician should encourage the patient to invite family or other loved ones 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 their 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” they know and what they “should” know, it is important to get a sense of how much information they are seeking. Some patients prefer not to know the full extent of their condition and prefer that it be discussed with trusted family members or other loved ones instead.
●Provide specific information – Provide the patient with unambiguous information about their current health status and what choices they 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 they have 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 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 3), what it means to “live well,” and what goals they seek to advance with medical treatment [74]. 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 they 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 they are interested in a specific treatment, ask them under which circumstances they might reconsider that choice.
For the patient who is interested in trials of life support, ask them 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 their preferred surrogate decision-maker. When a patient appoints more than one surrogate, ask them 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 their decision-maker to have. For example, do they want the surrogate to follow their medical treatment wishes exactly, or to use their own judgment?
●Inform the patient about what would be expected from a surrogate acting on their behalf. Many patients do not realize the importance of preparing their surrogate for the difficult decisions they may face.
●Disseminate their choices – Encourage the patient to disseminate their preferences, including with their family or other loved ones and especially with the chosen surrogate decision-maker.
●Document their preferences – The patient should document their 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 or other decision-makers 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 or other decision-makers, doctors, and health care facilities.
The Respecting Choices program incorporates a staged approach to ACP based on a person’s state of health [24]. 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 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 [75].
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 [76]. In addition, physicians systematically underestimate their patients’ quality of life and are thereby less likely to favor life-sustaining treatments than are patients themselves [77].
A surrogate serves as the patient’s representative and ideally should be chosen by the patient for this role when they are 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 they 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” [78].
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 [79]. Nonetheless, use of surrogates is the best available approach to decision-making in the presence of patient incapacity. Moreover, most patients favor a decision-making approach that allows surrogates to make decisions flexibly, using the AD as a general (not strict) guide.
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 clinician 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 their own self-interest rather than the best interest of the patient [80].
Legal issues surrounding surrogate decision-makers are addressed in detail separately. (See "Legal aspects in palliative and end-of-life care in the United States", 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 CPR 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 United States, 42 states have developed statewide 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 Physician Orders for Life-Sustaining Treatment (POLST) programs have been established, the POLST form replaces the out-of-hospital DNR.
AD registries — AD registries were created to address the problem that many ADs are not available when clinicians need them. Several states offer electronic registries for ADs. Commercial registries 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 [81,82].
COVID-19 RESOURCES — Addressing advance care planning (ACP) is of paramount importance in the coronavirus disease 2019 (COVID-19) pandemic [83]. Extensive resources for both clinicians and patients to facilitating ACP in this setting have been developed and are available through:
In addition, guidance for clinicians on having conversations about difficult topics related to COVID-19 is available from VitalTalk.
SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)
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.)
●Basics topics (see "Patient education: Medical care during advanced illness (The Basics)" and "Patient education: Advance directives (The Basics)")
SUMMARY AND RECOMMENDATIONS
●Advance care planning (ACP) is an ongoing process in which patients, their families or other decision-makers, and their health care 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 patient’s 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.)
●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 their behalf in the event that they lose 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 Designations) 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 their change in mind. (See 'Advance directives' above.)
●As of now, there is varying evidence that ACP improves outcomes, particularly for patients with serious illness, including rates of completion of ADs, likelihood that clinicians and families or other decision-makers 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 likelihood of dying in the preferred place. 'Interventions' above
●The clinician must assess the patient’s decision-making capacity before concluding that the patient can or cannot speak for themself. 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.)
ACKNOWLEDGMENT — The editorial staff at UpToDate acknowledge Karen Detering, MD, who contributed to an earlier version of this topic review.
