Facilitate difficult conversations and support patient decision making.
- The 1990 Federal Patient Self Determination Act requires that Medicare- and Medicaid-funded healthcare organizations follow state laws related to advance directives.
- Advance directives are legal documents that allow adults to record their wishes related to serious illness or end-of-life care.
- Advance directive laws vary from state to state and the directives have more than 20 different names. Nurses should familiarize themselves with the laws and names in their states.
Have you ever watched a family struggle over healthcare decisions for a loved one? Nurses witness heartbreaking scenarios when patients can’t make their own choices at the end of life, especially when family members don’t know the patient’s wishes and have to make complex judgments about life support and other treatment options. Having conversations about values and preferences before patients are too ill to participate helps ensure they receive the care they want, which decreases the burden on families. Nurses can support patients in having these difficult conversations.
An innovative care approach to full code hospice patients
Improving palliative care and communication in the ICU
Helping patients navigate end-of-life issues
Advance directives
The 1990 Federal Patient Self Determination Act ensures that patients have the opportunity to make healthcare decisions in advance. The act requires that Medicare- and Medicaid-funded healthcare organizations, such as hospitals and nursing homes, follow state laws related to advance directives. The National Institute on Aging defines advance directives as legal documents that allow adults to record their wishes related to serious illness or end-of-life care. They don’t require a lawyer to create. The two advance directives are living wills and durable power of attorney for healthcare (DPOAHC). The living will allows an individual to detail future healthcare goals in writing, and the DPOAHC designates a specific person (healthcare agent or proxy) to make decisions on a patient’s behalf. These documents come into play when someone becomes incapacitated and can’t speak for themselves. (See Patient self-determination.)
Patient self-determination
An amendment to the Medicare and Medicaid portion of the Social Security Act requires that certain healthcare organizations do the following:
- Inform patients of their right to choose their medical care.
- Inquire about and document whether patients have advance directive documents.
- Refrain from discrimination against those who have an advance directive.
- Honor a person’s advance directive according to state laws.
- Provide advance directive education to patients, staff, and the community.
Source: Patient Self Determination Act of 1990 congress.gov/bill/101st-congress/house-bill/4449
Advance directive laws vary from state to state, and the directives have different names in each state. For example, in Texas they’re called medical power of attorney, in Connecticut they’re called healthcare surrogate, and in Florida they’re called healthcare representative. Some states acknowledge both the living will and the DPOAHC, while others recognize one or the other. Some states require two adults to sign and witness a person’s signature on the directive; others require document notarization. Nurses practicing in multiple states should know each state’s advance directive laws. Start by visiting each state’s official website.
According to a study by Yadav and colleagues, only one in three people in the United States has an advance directive. Nurses can help improve this rate by providing patient education. In a study by Hilgeman and colleagues, nurse-led educational interventions resulted to three times higher advance directive completion. Rabow and colleagues found that nurse-led workshops also facilitate document completion. According to Hong and colleagues, even simple interventions, such as providing hard copies of advance directive forms, can lead to higher rates of completion. After completing these documents, patients should share them with family and healthcare providers and the forms should be saved in the patient’s health record.
Advance care planning explained
Sudore and colleagues define advance care planning as a process in which adults share their values and goals for future healthcare. These discussions aim to clarify treatment preferences before a person becomes seriously ill or reaches the end of life. Reviewing treatment options helps to clarify what a person would and wouldn’t want at the end of life. As a patient’s health status changes, providers should revisit these goals and confirm them. Planning care in advance allows patients to share their wishes, decreases the burden on family members, and helps ensure patients receive only desired care. In discussing the timing of advance care planning, Sedini and colleagues recommend that the process becomes a routine practice with a primary care provider and ideally starting when a person is well.
The process might start before or at the time of a terminal diagnosis (preferably in the primary care setting) when the patient is well enough to consider options, think through their choices, and discuss them with family members. In this outpatient setting, the conversation might include whether the patient wants to be hospitalized at the end of life. The plan should focus on keeping the patient comfortable and avoiding unwanted care. Respecting an individual’s autonomy in decision-making is a basic tenet of nursing practice. Ensure that the patient’s family and providers know the patient’s wishes.
When acutely ill, patients may feel stressed and fearful; this isn’t the best time to begin a discussion about serious illness care, but it is when the information is most needed. In the hospital setting, discussing the patient’s code status is considered advance care planning. Knowing whether a patient wants to receive a full-code or prefers not to be resuscitated is routine clinical practice. When discussing code status, the physician or nurse practitioner will consider the patient’s prognosis and treatment goals. Understanding what code status entails (cardiopulmonary resuscitation, defibrillation, advanced cardiac life support medications, and intubation/ventilation) allows patients to make informed decisions. Advance care planning also may include discussing specific treatments, such as artificial nutrition (tube feeding) or dialysis. Nurses can support patients and explain these different treatment options. When advance care planning conversations lead to advance directive completion, you’ve ensured documentation of the patient’s wishes.
Starting the conversation
Professionals in many disciplines, including physicians, nurse practitioners, and social workers, initiate advance care planning conversations. Nurses, who spend the most time with patients compared to those in other disciplines, hold an ideal position to participate in this process. As you develop rapport with a patient, you can start the conversation.
Guiding patients in advance care planning and assisting with the completion of advance directives falls under the scope of nursing practice. The American Association of Colleges of Nursing The Essentials: Core Competencies for Professional Nursing Education recommends that nurses provide leadership and advocate for patients. The American Nurses Association Scope and Standards of Practice state that nurses should honor patients’ rights, which includes encouraging informed decision-making and self-determination. These guidelines all support the nurse’s role in initiating advance care planning.
Although conversations about end-of-life care can be difficult and therefore tend to be avoided, a Kaiser Family Foundation poll found that most Americans believe patients and families should make decisions about this care. Respondents also believe that it’s more important for healthcare providers to be honest than to emphasize hope for seriously ill patients. These findings align with the patient’s right to autonomy and self-determination.
Tripken and Elrod found that young adults have positive attitudes toward advance care planning and advance directives. Young adults may benefit from advance care planning if they experience an unexpected illness or accident; they also may use it when caring for a family member. Starting the conversation early in life allows time to consider all options.
Death Over Dinner is a global initiative to bring young people together to discuss end-of-life care preferences over a meal. This novel approach can help spark the conversation. In a study by Mroz and colleagues, young adults reported fewer reservations about advance care planning after attending a Death Over Dinner event. The U.S. healthcare system doesn’t typically target young adults for advance care planning, so implementing unique strategies may help engage them in the topic.
Nurse education
Blackwood and colleagues describe two main barriers to advance care planning: lack of nurse education on the topic and insufficient time for these discussions. A review by Miller and a study by George and colleagues concur that nursing schools should provide more education on advance directives. With knowledge and confidence, nurses can help patients discuss end-of-life plans and complete these important documents. In addition, healthcare organizations should reinforce this subject in new nurse orientations. Professional development and continuing education can help keep nurses informed about advance directives and advance care planning so they can better support patients. (See Advance care planning resources.)
Advance care planning resources
In their scoping review, McMahan and colleagues found several interventions to aid advance care planning. Facilitated discussions, videos, interactive multimedia programs, and written material, as well as clinician training, all led to positive outcomes. With the right tools, nurses and other healthcare professionals can incorporate advance care planning into routine practice.
Respecting Choices
Respecting Choices (respectingchoices.org) offers training and patient education materials for a fee. Findings from a study by Myers and colleagues found that Respecting Choices produced positive outcomes for patients, including increased advance directive completion, enhanced advance care planning knowledge, and more goal-concordant care.
The Conversation Project
In collaboration with the Institute for Healthcare Improvement, The Conversation Project is a public initiative to help people discuss what matters most about end-of-life wishes. The campaign encourages people to explore their healthcare goals with family or friends to ensure appropriate care. In 2018, The Conversation Project National Survey found that most Americans are willing to have these discussions and believe that speaking about end-of-life care is important. However, the survey also found that only one-third of Americans have had such conversations. The Conversation Project aims to change this and get the dialogue started. You can access a free starter kit and resources to help lead these conversations at theconversationproject.org/get-started.
Join together
As patient advocates, nurses can facilitate advance care planning dialogue to help patients overcome the general reluctance to talk about end-of-life care. As nurses develop rapport with patients, they can help introduce the topic of advance care planning and promote advance directive completion. April 16 is National Healthcare Decisions Day, a perfect time for nurses, patients, and families to join together and learn about advance care planning.
Julie Resendes is an assistant professor of nursing at the Community College of Rhode Island, in Warwick, and a critical care staff nurse at Southcoast Hospitals Group in Fall River, Massachusetts.
American Nurse Journal. 2024; 19(3). Doi: 10.51256/ANJ032417
References
National Institute on Aging. Advance care planning: Advance directives for health care. October 31, 2022. nia.nih.gov/health/advance-care-planning-advance-directives-health-care#directives
American Association of Colleges of Nursing. The Essentials: Core Competencies for Professional Nursing Education. 2021. aacnnursing.org/Portals/0/PDFs/Publications/Essentials-2021.pdf
American Nurses Association. Nursing Scope and Standards of Practice. 4th ed. Silver Spring, MD: American Nurses Association; 2021.
Blackwood DH, Walker D, Mythen MG, Taylor RM, Vindrola‐Padros C. Barriers to advance care planning with patients as perceived by nurses and other healthcare professionals: A systematic review. J Clin Nurs. 2019;28(23-24):4276-97. doi:10.1111/jocn.15049
George TP, DeCristofaro C, Murphy PF, Remle CR. Knowledge, attitudes, and experience with advance directives among prelicensure nursing students. J Nurs Educ. 2018;57(1):35-9. doi:10.3928/01484834-20180102-07
Hilgeman MM, Uphold CR, Collins AN, et al. Enabling advance directive completion: Feasibility of a new nurse-supported advance care planning intervention. J Gerontol Nurs. 2018;44(7):31-42. doi:10.3928/00989134-20180614-06
Hong N, Root A, Handel B. The role of information and nudges on advance directives and end-of-life planning: Evidence from a randomized trial. Med Care Res Rev. 2023;80(3):283-92. doi:10.1177/10775587231157800
Kaiser Family Foundation. Views and experiences with end-of-life medical care in the U.S. April 27, 2017. kff.org/other/report/views-and-experiences-with-end-of-life-medical-care-in-the-u-s
McMahan RD, Tellez I, Sudore RL. Deconstructing the complexities of advance care planning outcomes: What do we know and where do we go? A scoping review. J Am Geriatr Soc. 2021;69(1):234-44. doi:10.1111/jgs.16801
Miller B. Nurses preparation for advanced directives: An integrative review. J Prof Nurs. 2018;34(5):369-77. doi:10.1016/j.profnurs.2018.07.001
Mroz E, Bluck S, Smith K. Young adults’ perspectives on advance care planning: Evaluating the Death Over Dinner initiative. Death Stud. 2022;46(2):381-90. doi:10.1080/07481187.2020.1731015
Myers J, Cosby R, Gzik D, et al. Provider tools for advance care planning and goals of care discussions: A systematic review. Am J Hosp Palliat Med. 2018;35(8):1123-32. doi:10.1177/1049909118760303
Rabow MW, McGowan M, Small R, Keyssar R, Rugo HS. Advance care planning in community: An evaluation of a pilot 2-session, nurse-led workshop. Am J Hosp Palliat Med. 2019;36(2):143-6. doi:10.1177/1049909118797612
Sedini C, Biotto M, Crespi Bel’skij LM, Moroni Grandini RE, Cesari M. Advance care planning and advance directives: An overview of the main critical issues. Aging Clin Exp Res. 2022;34(2):325-30. doi:10.1007/s40520-021-02001
Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53(5):821-32.e1. doi:10.1016/j.jpainsymman.2016.12.331
Tripken JL, Elrod CS. Young adults’ perspectives on advance care planning. Am J Hosp Palliat Care. 2018;35(4):627-34. doi:10.1177/1049909117727456
Yadav KN, Gabler NB, Cooney E, et al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff. 2017;36(7): 1244-51. doi:10.1377/hlthaff.2017.0175
Key words: advance care directive, advance care planning, living will
