This course aims to ensure that nurses understand advance care planning (ACP) and the use of advance directives, including living wills and durable power of attorney for healthcare (DPOAHC) documents.
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Advance Care Planning
Disclosure Statement
This course aims to ensure that nurses understand advance care planning (ACP) and the use of advance directives, including living wills and durable power of attorney for healthcare (DPOAHC) documents.
Upon completion of this activity, learners should be able to:
- discuss the importance of ACP
- explain the documents addressed in advance directives
- understand the role of an appointed healthcare decision-maker
- identify a patient's priority decision-maker based on state-specific guidelines
- describe various code status designations and their meaning
Description
Advance care planning (ACP) involves making decisions and having conversations about the types of healthcare treatment a person would want when they cannot make those decisions for themself. ACP can be completed at any age. The timing of completion can be influenced by factors such as the presence of a mild chronic medical condition or a terminal illness with a limited life expectancy. ACP should be proactive, as its purpose is to ensure that individuals receive medical care that aligns with their values and goals. Regardless of the patient's clinical picture, ACP should be incorporated into the care plan. As the patient's clinical picture changes, ACP documents should be addressed and adjusted to meet the current needs and goals of the patient (Silveira, 2022).
The ACP process has the goal of helping patients address questions surrounding what care is best for them. Appropriate care is highly individualized and influenced by the patient's goals, values, and personal preferences. Although other people can answer questions and guide the patient, the best decision maker about healthcare preferences is the patient themselves. Healthcare professionals (HCPs) can serve as a resource during the ACP process, answering the patient's questions regarding treatment options and helping them weigh the risks versus benefits of different treatment modalities. A patient's ability to make informed decisions can be influenced by the transparency of HCPs regarding the patient's condition and the risk of specific treatment options. Although decisions regarding possible scenarios may not need to be made when ACP occurs, HCPs and family members must understand that detailed planning allows members of the healthcare team and the patient's healthcare decision-maker(s) to make educated, timely decisions when there is a need. Additional goals of ACP include respecting patient autonomy, expanding relationships, and reducing overtreatment (Silveira, 2022).
ACP should include the patient and their support system in whatever form is meaningful to them. This support system may consist of their spouse, immediate or extended family, friends, or whomever they consider a trusted and reliable decision-maker. A patient's cultural and religious beliefs may also influence ACP and the persons involved in decision-making. For many underrepresented religious and ethnic groups, the standard practice for making healthcare decisions may differ from what is considered normal in a Western context. Many non-Western cultures view the family and community as the default decision-makers regarding treatment options. Other practices among such groups include deferring treatment decisions to a trusted religious leader, even when the patient can still make their own healthcare decisions (Silveira, 2022).
There are different reasons why an individual may not be able to make their own healthcare decisions. A patient may be comatose or experiencing a decline or change in their cognitive function (e.g., due to a medical or mental illness). To assess decision-making capacity, HCPs should perform a mental status exam (Libby et al., 2022). The individual must be able to:
- understand the information being presented to them that is relevant to the medical decision that needs to be made
- weigh the risks and benefits of medical decisions, including the side effects of choosing treatment versus the ramifications of foregoing treatment
- communicate with HCPs regarding their medical decisions
- demonstrate a continued ability to make medical decisions (Libby et al., 2022)
Any individual can initiate ACP. However, detailed discussions should include the entire healthcare team. Patient education materials, including videos and written guides, are available to assist patients in understanding ACP, including its purpose, process, and benefits. Medicare allows providers to bill for ACP; however, the prevalence of these discussions is only 7.5% (Silveira, 2022). Having conversations about ACP is essential, as it can improve patient outcomes for those with deteriorating chronic disease or severe illness, including:
- increased completion of advance directives
- increased use of palliative and hospice services
- more patients who died in their preferred location
- decreased rate of emergency room visits and hospitalization at the end of life
- decreased use of intensive, life-saving treatments at the end of life
- decreased rates of anxiety and depression among surviving family members, likely due to open discussions regarding the patient's preferences for end-of-life care
- decreased cost of end-of-life care (Silveira, 2022)
Advance Directives
In 1990 Congress passed the Patient Self-Determination Act (PSDA) as an amendment to Titles XVIII and XIX of the Social Security Act. Title XVIII established the Medicare program, and Title XIX established the Medicaid program. The PSDA went into effect on December 1, 1991, and mandated hospitals, skilled nursing facilities, hospice providers, home health agencies, and health management organizations to advise patients of their right to be informed and involved in medical decision-making. The PSDA also required providers to ask individuals about the presence of advance directives or any other documents that address the medical care they would like to receive with proper documentation of these wishes. If a patient's advanced directive documents are legally valid, the PSDA mandates that they must be implemented. Patients should not be discriminated against based on their medical treatment choices (Ignatavicius et al., 2018; Teoli & Ghassemzadeh, 2022).
The PSDA was passed to empower patients to make their own healthcare decisions, with the added benefit of preventing over- or under-treatment. In addition, there is the benefit of cost-savings due to patients foregoing expensive treatments, including admission to an intensive care unit (ICU) or placement of a percutaneous endoscopic gastrostomy (PEG) tube or gastrostomy (G) tube for artificial nutrition at the end of life. Despite these advantages, one systematic review of 150 studies involving 795,909 individuals from 2011 to 2016 showed that only 37% of participants had completed an advance directive. Older individuals had a higher completion rate, with approximately 70% having an advance directive in place at the time of their death (Silveira, 2022; Teoli & Ghassemzadeh, 2022). Other factors that increase the likelihood that an individual has completed an advance directive include:
- White race
- history of chronic illness, including acquired immunodeficiency syndrome (AIDS)
- high disease burden
- prior knowledge of advance directives
- higher level of education
- increased debility (Silveira, 2022)
Advance Directive Documents
Advance directives are legal documents that help guide treatment when an individual cannot make their own medical decisions. There are typically two primary documents included in an advance directive: a li
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ving will and a durable power of attorney for healthcare (DPOAHC). To keep these documents current and ensure that the contents continue to align with the patient's goals of care, the primary provider and the patient should review the documents at yearly wellness visits. At that time, the documents should also be uploaded to the patient's electronic medical record (EMR). These documents should also be given to any individual who may be included in the patient's medical care decisions should they become unable to make their own decisions. This helps eliminate the surprise some people feel when they discover they have been designated as a person's decision-maker and are asked to fill that role without preparation. The patient's attorney should also keep a copy of the documents. Updated versions should be uploaded to the EMR and distributed to possible decision-makers if these documents are changed. Some states now offer electronic registries where individuals can register their advance directive documents. This registry is then available to healthcare providers 24/7, or the advanced directive can be electronically sent to a participating healthcare organization and stored within the patient's electronic medical record for quick access (Ignatavicius et al., 2018; Sabatino, 2022a).
Specific advance directive forms vary from state to state. Patients must fill out the correct advance directive form for their location, as many states will not recognize advance directives established in another state. Caring Connections is an online database supported by the National Hospice and Palliative Care Organization that provides the appropriate advance directive form for each state. These forms can also be found on the Bar Association website for each state. Terminology also varies slightly between states. Most states name the individual responsible for making medical decisions the DPOAHC, which can differ from the durable power of attorney for finances or may be the same person (CaringInfo, 2022).
Living Will
A living will indicates an individual's treatment preferences when they cannot make their own decisions. The living will is often applicable to life-sustaining treatments when death is near. It addresses a person's preferences regarding cardiopulmonary resuscitation (CPR), the use of artificial mechanical ventilation, and artificial nutrition and hydration. The document is known as a living will since it goes into effect while the patient is still living. Although a living will can help HCPs understand an individual's wishes regarding treatment, when it is completed too early and not updated, it may not accurately reflect the patient's current preferences regarding medical treatment based on a new diagnosis. Another downside to a living will is that it cannot address every clinical scenario, and there may be gaps in treatment directives. Although a living will outlines treatment preferences, it does not force an HCP to deliver treatment that is not medically indicated or beneficial, such as experimental chemotherapy, antibiotics, transfusions, or artificial nutrition (Ignatavicius et al., 2018; Sabatino, 2022a; Silveira, 2022).
For a living will to be valid, it must adhere to state guidelines. These guidelines differ from one state to another; some states require a living will to be standardized following a set outline, while others are more flexible and allow the individual more freedom in the language used as long as the document is signed and witnessed. Some states have specific guidelines regarding who can be a witness to the signing of a living will. HCPs directly involved in an individual's treatment are often not permitted to act as witnesses. Once the individual cannot make their own healthcare decisions, their living will goes into effect. Many states have specific guidelines that dictate criteria to deem a patient unable to make their own medical decisions (Sabatino, 2022a).
Durable Power of Attorney for Health Care
A DPOAHC is part of an advance directive. This document identifies an individual whom the patient, also known as the principal, has elected to make healthcare decisions on their behalf. The terminology used to describe this individual varies from state to state, but examples include the healthcare proxy, healthcare agent, healthcare representative, or surrogate decision maker. This individual is only given the authorization to make healthcare decisions. In some states, the decision-making authority of the DPOAHC goes into effect once the principal person becomes incapable of making their own decisions. Other states recognize an immediately effective DPOAHC. This gives the DPOAHC the authority to make decisions on the principal's behalf immediately; however, if the principal maintains decision-making capacity, they can override any decisions made by the DPOAHC. This override ability makes the difference between them almost insignificant (Sabatino, 2022a).
When a DPOAHC is completed, a primary and an alternate person who can make healthcare decisions are often identified. The role of the alternate person is to step in to make decisions when the primary person is unable or unwilling to accept the responsibility. The principal can name multiple people to share the role of DPOAHC and make decisions together. Unfortunately, if these two or more individuals cannot agree on treatment choices, the treatment plan may come to a halt until all parties can reach a consensus. An extended stalemate may require involving the ethics committee or local courts in the decision-making process (Sabatino, 2022a).
Although many people believe they only need to complete a DPOAHC after they reach retirement age or are diagnosed with a terminal illness, it is beneficial to have a DPOAHC completed at any age. A DPOAHC can be enacted whenever an individual cannot make their own decisions, even if their condition is temporary. Without this document in place, there is a specific priority list of individuals who can legally make decisions on behalf of the principal. The order and individuals included on this list will differ from state to state. Having a DPOAHC in place ensures that the person making medical decisions on behalf of the incapacitated principal is the person they want to make their decisions; this is especially important in the case of unmarried couples (Sabatino, 2022a).
Power of Attorney
If an individual has both a living will and DPOAHC completed, there should be explicit instructions on which one to follow if any contradictions are present. Many individuals combine both documents into one power of attorney (POA). The benefit of a POA is that the identified individual has more freedom to make real-time decisions instead of following instructions based on hypothetical medical scenarios. The dual setup is also helpful when details regarding specific treatment options are not addressed in the living will or DPOAHC. In most circumstances, the POA has the same authority as the principal. Additionally, POA documentation is recognized from one state to another. In the past, POA documentation expired after a set amount of time; however, there is an option that is recognized by many states now known as a durable POA that remains valid until the individual dies or revokes the document. Although this document does not expire, patients must review it frequently to ensure that former friends or spouses do not remain named as their healthcare agents (American Bar Association, 2022; Sabatino, 2022a).
Code Status
Another component of an advance directive is code status documentation. Examples of the various recognized code statuses include full code, do not resuscitate (DNR), do not attempt to resuscitate (DNAR), do not intubate (DNI), limited, do not resuscitate – comfort care arrest (DNR-CCA), or do not resuscitate – comfort care (DNR-CC). Code status options are state-specific and are often not recognized by other states if the patient crosses state lines. The most common are full code and DNR. Code status can indicate to the healthcare team how aggressive treatment should be in a life-threatening event such as cardiac arrest and whether to initiate advanced cardiac life support (ACLS). When a DNR is in place, it indicates to the healthcare team that the person or their appointed decision-maker has decided that resuscitation in the event of cardiac or respiratory arrest should not occur. This code status is often reserved for those individuals diagnosed with a terminal or life-limiting illness and situations where attempted resuscitation would not benefit the patient or improve long-term outcomes (Ignatavicius et al., 2018; Sabatino, 2022b).
Some states have begun adopting a directive known as Physician Orders for Life-Sustaining Treatment (POLST). This document gives detailed directives in case of cardiac or respiratory arrest (Sabatino, 2022b). This initiative also goes by many other names, including:
- Medical Orders for Life-Sustaining Treatment (MOLST)
- Physician Orders for Scope of Treatment (POST)
- Medical Orders for Scope of Treatment (MOST)
- Clinical Orders for Life-Sustaining Treatment (COLST)
- Transportable Physician Orders for Patient Preferences (TPOPP)
- Delaware Medical Orders for Scope of Treatment (DMOST)
- Iowa Physician Orders for Scope of Treatment (IPOST)
- Transportable Orders for Patient Preferences (TOPP)
- Louisiana Physician Orders for Scope of Treatment (LaPOST)
- Oklahoma Physician Orders for Life-Sustaining Treatment (OkPOLST)
- Pennsylvania Orders for Life-Sustaining Treatment (PAPOLST)
- Wyoming Providers Orders for Life-Sustaining Treatment (WyoPOLST)
- State Authorized Portable Orders (SAPO)
- Summary of Physician Orders for Scope of Treatment (SMOST; National POLST, 2022)
Although these initiatives have different names and specific features, they all follow a similar paradigm. To simplify discussions, POLST is the term used when discussing any of the above programs. The POLST process begins with conversations with the individual and their designated decision-maker regarding their goals of care and treatment preferences. These discussions and identified goals of care result in a set of medical orders being initiated that can be accessed across multiple healthcare settings. Items addressed include code status, preferences regarding CPR, mechanical ventilation, and artificial hydration and nutrition. They also address whether the patient wants full-curative treatment, limited situational treatments, or comfort care only. POLST programs can provide continuity of care among various providers from different specialties, offering access to the patient's outlined care goals. Although these programs are only available in some states, their use is becoming more widespread. Despite the name of some of these programs, the orders can be signed by any licensed provider with ordering privileges (Ignatavicius et al., 2018; Sabatino, 2022b).
Unfortunately, living wills, DPOAHCs, and code status documentation are not always readily available in an emergency. First responders may initiate life-saving treatments on individuals without knowing their wishes not to be resuscitated. This occurs because, in many states, in the community setting, first responders are required to implement life-saving treatment unless a DNR (or state-equivalent) or POLST can be physically presented to them upon arrival. A valid outpatient DNR should be completed following state-specific guidelines to prevent this from happening. Typically, the provider and the patient or their designated decision-maker must sign the document. It is recommended that a copy be kept in the patient's residence and that they consider wearing an alert bracelet to convey to first responders their wishes regarding treatment (Sabatino, 2022b).
Healthcare Proxy
Advance directive completion cannot be initiated once an individual becomes incapacitated and cannot understand their treatment options and verbalize their medical preferences. When ACP does not occur preemptively, advance directives are not established, and family members or healthcare proxies are left to make decisions without guidance. Under these circumstances, the patient may also be unable to choose the person who makes their healthcare decisions. Each state has a different guideline on a patient's default decision maker(s) if they have not designated a healthcare proxy themselves. Unfortunately, the default decision maker under state law may not be the best person to make healthcare decisions or may be unable to make the decisions that the patient would have made for themselves. For example, in a clinical setting, a patient may have told their long-term significant other that they would never want to be on a ventilator or be kept alive by machines. Then, something happens to the patient that incapacitates them to the point of being unable to make healthcare decisions. When no official advance directive has been completed, the appointed decision maker, based on state guidelines, is often the next of kin, which may be a child who decides to have the patient placed on a ventilator going against the wishes verbalized by the patient (Silveira, 2022).
Many states follow the same priority order for designating a healthcare proxy when an advance directive is not completed. Often, the order is as follows:
- spouse, unless legally separated from the patient or divorce proceedings have begun
- adult child
- parent
- adult sibling
- next closest adult relative (CaringInfo, 2022)
Priority lists are state-specific, and some states do not follow the above list. Certain states allow the physician and ethics committee, or two physicians, to make decisions on behalf of a patient when no other family member or friend is available or willing to act as the patient's decision-maker. Some states include an adult with a history of care or concern for the patient in the priority list, usually after adult siblings. Some states have no priority list of possible decision-makers and will defer to anyone willing and able to fulfill this role. Since multiple individuals can fit into a particular category (e.g., four adult children), there may be times when only some agree on the course of treatment. In those cases, an active effort is made to educate those involved and attempt to reach a unanimous decision. The ethics committee or local courts may have to get involved if a resolution cannot be reached. State-specific priority decision-maker lists can be found on the CaringInfo website (CaringInfo, 2022).
Ethical Issues
All interdisciplinary team members have an ethical duty to ensure that patients understand their medical condition and treatment options, including the risks and benefits of various treatment modalities or foregoing treatment. Patients who can make informed decisions about their care have improved outcomes, even if the outcome is pursuing hospice or comfort care. Ethical issues may also stem from disagreements between family members or the patient and their family regarding the treatment plan (Teoli & Ghassemzadeh, 2022).
There are also ethical considerations that arise when an individual decides to forego any life-saving interventions. Providers make a commitment to sustain life and relieve suffering, which can be conflicting for some when a patient chooses to focus on comfort. When there is a conflict, the ethical principle of patient autonomy should be upheld. Providers should respect the patient's decision to forego treatment and not allow their personal beliefs or preferences to influence the patient's decision or the care provided. There is no ethical difference between the withholding or withdrawing of treatment (American Medical Association, 2002).
References
American Bar Association. (2022). Estate planning FAQs: Power of attorney. https://www.americanbar.org/groups/real_property_trust_estate/resources/estate_planning/power_of_attorney
American Medical Association. (2002). Current opinions of the council on ethical and judicial affairs. https://www.encyclopedia.com/science/encyclopedias-almanacs-transcripts-and-maps/current-opinions-council-ethical-and-judicial-affairs
CaringInfo. (2022). Advance directives. National Hospice and Palliative Care Organization. https://www.caringinfo.org/planning/advance-directives/by-state
Ignatavicius, D. D., Workman, M. L., & Rebar, C. R. (2018). Medical-surgical nursing: Concepts for interprofessional collaborative care (9th ed.). Elsevier.
Libby, C., Wojahn, A., Nicolini, J. R., & Gillette, G. (2022). Competency and capacity. StatPearls [Internet]. https://www.ncbi.nlm.nih.gov/books/NBK532862
National POLST. (2022). National POLST maps. https://polst.org/programs-in-your-state
Sabatino, C. (2022a). Advance directives. Merck Manual Professional Version. https://www.merckmanuals.com/professional/special-subjects/medicolegal-issues/advance-directives
Sabatino, C. (2022b). Do-not-resuscitate (DNR) orders and physician orders for life-sustaining treatment (POLST). Merck Manual Professional Version. https://www.merckmanuals.com/professional/special-subjects/medicolegal-issues/do-not-resuscitate-dnr-orders-and-physician-orders-for-life-sustaining-treatment-polst
Silveira, M. J. (2022). Advance care planning and advance directives. UpToDate. Retrieved December 13, 2022, from https://www.uptodate.com/contents/advance-care-planning-and-advance-directives#topicContent
Teoli, D., & Ghassemzadeh, S. (2022). Patient self-determination act. StatPearls [Internet]. https://www.ncbi.nlm.nih.gov/books/NBK538297