◆ Advance care planning is essential to ensure that palliative and end-of-life care is based on patient wishes.
◆ Toward the end-of-life, patients may lose the ability to participate in decisions, and surrogate decision makers may need to make decisions on their behalf.
◆ Advanced practice registered nurses (APRNs) need to support patients, surrogates, and family members as they participate in advance care planning and make palliative and end-of-life decisions.
Mr. Oates was a 72-year-old widower with advanced heart failure. His palliative APRN was working with the heart failure clinic to help manage his dyspnea. After he was assessed, the APRN discussed goals of care with Mr. Oates and his treatment preferences. When the APRN asked Mr. Oates if he had a living will or a healthcare proxy, he told her he did not and was “really not interested in that kind of stuff.” He said his friends had told him that even if you have a living will, no one reads them, so why bother. The palliative APRN spent a few minutes clarifying why advance directives are important and assured Mr. Oates that nurses, physicians, and other members of the healthcare team do read living wills and honor them. He told the APRN that he would think about it. The APRN provided recommendations for ways to minimize and manage his dyspnea. She also asked Mr. Oates to think about advance directives, and Mr. Oates agreed to do so.
At the next visit, Mr. Oates told the APRN that he was interested in identifying someone who could make decisions for him if he was unable to. His sister was the best person, but she had been recently hospitalized and he was not sure what to do.
Advance Care Planning
Advance care planning provides an opportunity for individuals to contemplate what is important to them at the end of life. Advance care planning involves individuals’ taking the time to thoughtfully consider their life, their death, and their personal preferences. These preferences are often influenced by personal values, culture, and spiritual beliefs. An important part of advance care planning is documenting personal preferences and talking about preferences with key family members, close friends, and healthcare providers. Advance care planning should include patient and family education, promotion of communication, and helping people to complete advance directives.1
Ideally, advance care planning is an ongoing process among patients, families, and healthcare providers that begins while individuals are healthy and able to communicate their wishes.2,3 Discussions with trusted providers that occur over time as a process are better than one-time discussions. Some patients will choose not to participate in advance care planning, and this decision needs to be respected by the palliative APRN and healthcare team.4
Using the transtheoretical model of change as a framework, stages of behavior in advance care planning may include (1) pre-contemplation (the patient has not thought about advance care planning), (2) contemplation (the patient is thinking about advance care planning), (3) preparation (the patient is planning to participate in advance care planning), (4) action (the patient has had discussions and is engaged in advance care planning), and (5) maintenance (the patient has completed documents like a living will or has formally designated a durable power of attorney for healthcare).5 Palliative APRNs can assess the stage that each person is in and develop a plan to discuss the topic and motivate and help patients as they participate in advance care planning.
Most patients will not initiate advance care planning conversations with the palliative APRN, but if the palliative APRN raises the issue, the patient may welcome the chance to discuss it. Researchers have found that when clinicians initiate advance care planning discussions and are positive about advance care planning, patients are more likely to complete advance directive documents.6,7,8
The palliative APRN should also encourage patients to involve their surrogate decision makers and/or families in the advance care planning process. Family involvement promotes advance care planning engagement and advance directive completion.8 Involvement may also improve proxy accuracy in decision making.9
Healthcare Decision Making
Patients make personal and variable healthcare decisions, decisions that may change over the course of an illness or injury trajectory.4 Individuals are free to make their own healthcare decisions. These decisions may be simple or quite complex. Autonomous individuals are free to hold certain views, make certain choices, and take certain actions based on personal values and beliefs.10 Self-determination is based on the principle of autonomy and on respect for the individual.
It is important that the voluntary choice of an informed person with decision-making capacity determines whether any treatment, including life-sustaining therapies, is initiated, continued, or withdrawn.11 Individuals can make the best decisions when they are informed and if they have the time they need to make decisions.
A person with decision-making capacity makes his or her decisions. This supports free choice of the individual and provides important support of autonomy. These decisions are made based on each person’s values, beliefs, and personal preferences. Palliative APRNs assess whether patients have decision-making capacity, provide the information that patients need to make decisions, and determine whether patients understand the information provided.
Often, it is clear if a patient has decision-making capacity, but when it is unclear, the palliative APRN needs to perform an assessment. The APRN may find it helpful to assess decision-making capacity using a set of criteria, such as (1) the patient can make and communicate a decision, (2) the patient is able to articulate an understanding of the medical situation and prognosis, the nature of the recommended care, alternative courses of care, and the risks, benefits, and consequences of each alternative, (3) decisions are consistent with the patient’s known values and goals, and (4) the patient uses reasoning to make the choice.12
Questions that may be helpful for the palliative APRN to ask while assessing a patient’s decision-making capacity include the following:
1. What is your understanding of your health or condition now?
2. What is the therapy/treatment likely to do for you? What are the likely positive and negative outcomes of the therapy/treatment from your perspective?
3. What are you hoping the treatment will do for you?
4. What do you think will happen if you do not have the therapy/treatment?
5. What do you think will happen if you do have the therapy/treatment?
5. How did you decide to accept or refuse the therapy/treatment?
6. What makes the therapy/treatment seem better or worse than the alternatives?13
A patient’s decision-making capacity can change over even a short period of time based on a variety of issues, including, for example, the time of day (the patient may have clear cognition in the morning after a restful night of sleep) and when certain medications are given (especially medications that impair cognition). Making decisions about care depends on the patient’s ability to understand the clinical facts of his or her health status and the consequences of care alternatives.14 Palliative APRNs must assess each patient’s decision-making capacity and have ongoing discussions with patients about their preferences for care, including end-of-life care.
The Patient Self-Determination Act (PSDA) was passed by the U.S. Congress as an amendment to the Omnibus Budget Reconciliation Act of 1990.15 The PSDA requires hospitals, nursing homes, home health agencies, hospice providers, and others receiving Medicare or Medicaid reimbursement to ask if adult patients have an advance directive, to inform patients of their rights, and to provide individual and community education about advance directives. Despite legislative efforts and attempts within the healthcare community to promote advance care planning, fewer than 30% of Americans have advance directives.16 The most common types of advance directives are living wills and durable power of attorney for healthcare documents.
Researchers who conducted the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments reported shortcomings in the care of seriously ill hospitalized patients, especially in relation to physicians’ knowing what treatments patients wanted at the end of life.17 As a result of this study and other reports, numerous initiatives have been developed in an attempt to promote advance care planning and improve end-of-life care.
In 2008, a grassroots effort started National Healthcare Decisions Day, April 16. The goal is to organize community events to encourage and help individuals to complete advance directives. Table 39.1 lists advance care planning resources.
Table 39.1 Advance Care Planning Resources
Aging With Dignity
American Bar Association
Compassion and Support at the End of Life
The Conversation Project
National Cancer Institute
National Hospice and Palliative Care Organization—Caring Connections
National Healthcare Decisions Day
National Institute on Aging
National POLST Paradigm
Take Charge of Your Life
A living will is a legal document that outlines patient preferences for treatments like cardiopulmonary resuscitation (CPR), artificial nutrition and hydration, life-sustaining treatments, and comfort care. A living will takes effect when a patient can no longer speak on his or her own behalf and when the condition discussed in the advance directive is met. For example, a patient’s living will may state, “I do not want life-sustaining treatments if I am in a permanent state of unconsciousness or a persistent vegetative state, or my condition is terminal.”
A durable power of attorney for healthcare might also be referred to as a healthcare proxy. In these legal documents, a person designates the person who will make medical decisions on his or her behalf if something happens in the future and the individual no longer has decision-making capacity.
Legal requirements and laws related to advance directives vary from state to state. Palliative APRNs need to know the legal requirements in the state where they practice and whether specific living will and healthcare proxy documents are available in their state. It is also important to know if witnesses are needed and if the documents need to be notarized. Palliative APRNs should know if advance directive documents developed in other states can be honored in the state in which they practice.
It is important for palliative APRNs to ask patients if they have written advance directives. If the patient has a living will and/or a durable power of attorney for healthcare, the palliative APRN should review the document(s) with the patient and ask the patient to confirm that his or her wishes are still the same as what was written in the document(s). If a patient would like to change the documents, the APRN supports the patient in doing so and offers assistance or direction as needed. The palliative APRN should document all advance directive discussions. If patients do not have advance directives, they should be provided with information regarding why they are important, encouraged to develop them, and helped to do so.
Advance directives should be completed early so that there is a clear understanding of what each patient’s preferences are for palliative and end-of-life care. The palliative APRN should review each patient’s advance directives periodically. Patients should be encouraged to communicate any changes in treatment preferences or in their healthcare proxy with their healthcare providers. Again, all discussions should be documented by the palliative APRN.
Patients should discuss their treatment preferences not only with clinicians but also with their proxy decision maker and close family members and friends. Patients should know that if they would like the palliative APRN’s support while discussing or sharing advance directives with family members, the APRN will help them to do this.
The palliative APRN can suggest helpful words to use when asking someone to be a surrogate. Suggestions might include, “If a time should come when I am not able to speak, I would like you to speak for me. You know me well. You know what I value most and you know what I would and would not want at the end of my life. Would you be willing to do this for me?”
If the patient has a living will and/or a durable power of attorney for healthcare, copies of the documents should be distributed to key people. A copy can be given to healthcare providers so the documents can be added to the patient’s medical record and placed in an area that can be easily accessed. If an electronic medical record system is used, the advance directive documents can be scanned and included in the electronic record.
Patients should also be advised to keep copies of advance directive documents in several places. One copy may be kept in a personal safe or a safety deposit box. Other copies should be given to the patient’s surrogate decision maker. Copies can also be given to other close family members. It is also a good idea to have a card in one’s wallet stating that the patient has an advance directive and describing where it is located. People may also keep their advance directive on a flash drive with other personal information that might be kept on a key ring with personal keys.
Online resources are also available to create and store advance directive documents. Most require a fee from the individual or a fee from the healthcare provider or organization. Examples include the National Living Will Registry® and MyDirectives® (mydirectives.com). Another recent technology includes the use of smartphone apps. One example developed by the American Bar Association is My Health Care Wishes (www.MyHealthCareWishes.org). It provides a mechanism for individuals to use mobile technology to create and store advance directive documents and other health-related information. As electronic medical records become the norm, more seamless resources and registries will make access to advance directives easier.18
Researchers have identified barriers to, and disparities in, the completion of advance directives. Lack of knowledge about advance directives, not understanding advance directives, and not being asked about advance directives by healthcare providers have been described as barriers to advance directive completion. Rao and colleagues16 found that individuals who were younger, had lower incomes, and had less education were less likely to complete advance directives. Non-Caucasians are also less likely to complete advance directives.16,19 Other reasons reported for failure to complete advance directives were (1) healthcare providers did not take the time to discuss advance care planning, (2) individuals wanted to leave it in God’s hands, and (3) the belief that family members would know what to do.19,20
Out-of-hospital Do Not Resuscitate (DNR) orders were historically developed in an effort to honor individuals’ wishes to avoid CPR and to limit aggressive interventions. They were honored by emergency personnel, but they were often not honored if a patient was admitted to an acute care setting.
Many states have now passed legislation regarding medical order sets. There are state variations, but the order sets are commonly referred to as the Medical Orders for Life-Sustaining Treatment (MOLST) or the Physician/Provider Orders for Life-Sustaining Treatment (POLST). The MOLST and POLST documents are portable order sets that were developed for patients with serious health problems. The objective was to respect the patient’s wishes regardless of the setting. MOLST and POLST documents are honored in the home, acute care settings, long-term care settings, palliative care, and hospice settings. Thus, multiple documents are not needed in different settings; the same document follows the patient as he or she moves from setting to setting.
These medical orders are written to ensure that care is provided according to the patient’s wishes. The document includes information regarding patient preferences for CPR, artificial nutrition and hydration, antibiotic use, other life-sustaining therapies, and comfort care. The documents address the entire spectrum of care, from aggressive treatment to comfort care interventions.
As with other aspects of advance care planning, palliative APRNs need to be aware of state legislation related to these medical order sets. As with living will and durable power of attorney for healthcare documents, it is important that these order sets are completed and reviewed to ensure that care is consistent with the patient’s wishes.
A MOLST/POLST differs from an advance directive in that it is a portable medical order. Individuals may have both an advance directive and a MOLST/POLST. The documents should complement each other. Some individuals will have just the MOLST/POLST. MOLST/POLST forms create a legal obligation that medical professionals will honor the patient’s end-of-life treatment preferences.
The MOLST and POLST forms are signed by the patient’s physician or as allowed in some states, the form can be signed by an APRN or a physician assistant. Depending on the state, the patient and his or her surrogate may sign the document. Orders on the MOLST/POLST form do not expire and can be revised by voiding the form and completing a new one.
Surrogate Decision Making
Another way to ensure that a patient’s palliative and end-of-life wishes will be honored is through surrogate decision making. The primary mechanism for facilitating surrogate decision making occurs when a patient designates a durable power of attorney for healthcare or a healthcare proxy. As with other advance care planning documents, the document designating a healthcare proxy should be shared with the patient’s healthcare providers. The palliative APRN should ask each patient if the person designated as healthcare proxy knows that he or she is aware of this designation. The APRN should also ask the patient if he or she has reviewed the living will and if applicable MOLST/POLST documents with his or her healthcare proxy. Having conversations is an essential part of helping the healthcare proxy to fully understand the patient’s wishes.
The healthcare proxy needs to know that he or she will be involved in the decision-making process if the patient no longer has decision-making capacity. The role of the healthcare proxy is to make decisions on the patient’s behalf. The healthcare proxy will make decisions based on information that the patient wrote in his or her living will and conversations that the proxy and the patient had about the patient’s wishes.
Periodically, when advance directive documents are reviewed, it is important for the palliative APRN to review the healthcare proxy document and confirm that the person designated as healthcare proxy has not been changed. If patients want to make changes, they should be encouraged to develop a new document. A healthcare proxy needs to change if the surrogate dies or if the relationship changes between the patient and the surrogate.21
If the patient has not designated a healthcare proxy, the palliative APRN should discuss this process and provide the patient with information regarding how to do this. Key to successful surrogate decision making is selecting the right person. When selecting a surrogate decision maker, patients should consider someone who can be trusted to make sound decisions, is emotionally stable, who would be comfortable asking healthcare providers questions, and is available.21
If the time comes that a patient cannot communicate or no longer has decision-making capacity, then the palliative APRN and other members of the healthcare team will turn to the proxy if important decisions need to be made. The proxy is responsible for making decisions based on what the patient would want done. This supports the patient’s previously stated wishes and honors and respects them. If the proxy does not know what the patient would want, then he or she makes decisions based on what he or she thinks would be in the best interest of the patient.
If a patient did not designate a healthcare proxy and cannot communicate his or her wishes, the team turns to the family for advice. Decades ago, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research recommended that the family is the patient’s best advocate if the patient does not have decision-making capacity.11 The palliative APRN should ask the family if the patient ever stated what he or she would want at the end of life.
Most states have surrogacy laws that specify who can make decisions for a patient. These state laws should be followed when determining which family member has legal authority to make decisions for a patient without decision-making capacity. Legally determined standards are typically set and need to be followed by the palliative APRN. A patient’s spouse is typically legally authorized as the primary decision maker. If the patient’s spouse has died or the patient is divorced, the next legal decision maker might be the eldest adult child; in other states all adult children need to come together to make a decision. It is important that palliative APRNs know and understand surrogacy laws. In cases of conflict, or where no previously designated surrogate is available, it may be necessary to petition a court to appoint a surrogate.22 The appointed guardian then serves in the role of surrogate.
If the patient does not have decision-making capacity, then the designated healthcare proxy or the family member legally designated to make decisions for the patient does so based on the patient’s preferences identified in the living will. If there is no living will, then decisions may be guided by conversations that the surrogate previously had with the patient. If a patient had no living will and did not state what he or she would have wanted at the end-of-life, substituted decisions are made. This is when decisions are made based on what decisions the surrogate decision maker thinks that the patient would make. If the surrogate decision maker has no idea what decision the patient would make, a best interest decision is made. The decision is based on what might be best for an average person.
Although one person is designated as surrogate decision maker, multiple family members are often present and involved when a patient nears death. Even though one decision maker has legal authority for decision making, it is common for the surrogate decision maker to include multiple family members in discussions regarding goals of care, especially in the context of end-of-life care.13,23 Surrogate decision makers commonly seek advice and help from other family members when making end-of-life decisions.24 Families have found advance directives helpful when making end-of-life decisions related to life-sustaining therapies.25,26,27,28,29,30,31
Making end-of-life decisions on behalf of someone else places a tremendous burden on surrogate decision makers.32,33 Some family members may support and some family members may not support the surrogate decision maker as he or she comes to terms with the decision that needs to be made. It is important for the palliative APRN to help and support the surrogate decision maker and the patient’s family through this process. Once decisions are made, the APRN should ensure that the decisions are respected and honored.
Decisions should always be made based on the patient’s wishes. Important questions may include, “If your mother could speak with us, what would she want done?” Keeping the conversation focused on patient wishes is important and may prevent conflict and guilt from arising within the family.13
Summary and Conclusion
Palliative APRNs must assist and guide patients as they participate in advance care planning. Respect for patient autonomy is essential. Patients need to be supported as they determine their palliative and end-of-life wishes. Palliative APRNs can educate and help patients to develop living wills, designate healthcare proxies, and develop MOLST/POLST documents. Conversations that palliative APRNs have with the patient, surrogate, and family not only help to identify the patient’s wishes but also help to ensure that these wishes are honored and respected.
1.The National Consensus Project for Quality Palliative Care. C Dahlin, ed.Clinical Practice Guidelines for Quality Palliative Care. 3rd ed. Pittsburgh, PA: The National Consensus Project for Quality Palliative Care; 2013.Find this resource:
2.Hickman SE, Hammes BJ, Moss AH, Tolle SW. Hope for the future: Achieving the original intent of advance directives. Improving End of Life Care: Why Has it Been so Difficult? Hastings Center Special Report. 2005; 35(6): S26–S30.Find this resource:
3.Tilden VP, Corless I, Dahlin C, Ferrell B, Gibson R, Lentz J. Advance care planning as an urgent public health concern. Nursing Outlook 2011; 59(1): 55–6.Find this resource:
4.Hospice and Palliative Nurses Association. Position Statement: The Nurse’s Role in Advance Care Planning. Pittsburgh, PA: Hospice and Palliative Nurses Association; 2010.Find this resource:
5.Fried TR, Redding CA, Robbins ML, Paiva A, O’Leary JR, Iannone L. Stages of change for the component behaviors of advance care planning. J Am Geriatrics Soc 2010; 58: 2329–36.Find this resource:
6.Alano GJ, Pekmezaris R, Tai JY, et al. Factors influencing older adults to complete advance directives. Palliat Support Care. 2010; 8(3): 267–75.Find this resource:
7.Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of lie care in elderly patients: Randomized control trial. BMJ 2010; 340: c1345.Find this resource:
8.Levi BH, Dellasega C, Whitehead M, Green MJ. What influences individuals to engage in advance care planning? Am J Hosp Palliat Care. 2010; 27(5): 306–12.Find this resource:
9.Barrio-Canteljo IM, Molina-Ruiz A, Simon-Lorda P, et al. Advance directives and proxies’ predictions about patient’s treatment preferences. Nursing Ethics 2009; 16(1): 93–109.Find this resource:
10.Beauchamp TL, Walters L, Kahn JP, Mastroianni AC.Contemporary Issues in Bioethics. 8th ed. Belmont, CA: Wadsworth Publishing Co.; 2013.Find this resource:
11.President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forgo Life-Sustaining Treatment: A Report on Ethical, Medical and Legal Issues in Treatment Decisions. Washington, DC: U.S. Government Printing Office; 1983.Find this resource:
12.Lo B.Resolving Ethical Dilemmas: A Guide for Clinicians. 4th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2009.Find this resource:
13.Wiegand DL, Russo MM. Ethical considerations. In: Dahlin M, Lynch MT, eds. Core Curriculum for the Advanced Practice Hospice and Palliative Registered Nurse. 2nd ed. Pittsburgh, PA: Hospice and Palliative Nurses Association, 2013: 39–59.Find this resource:
14.Hamilton JB. The ethics of end-of-life care. In: Poor B, Poierrier GP.End of Life Nursing Care. National League for Nursing. Sudbury, MA: Jones and Bartlett; 2001:73–103.Find this resource:
15. Patient Self-Determination Act 4206-4751, Pub L No. 101-508 (1990).
16.Rao JK, Anderson LA, Lin F, Lauz JP. Completion of advance directives among U.S. consumers. Am J Prev Med. 2014; 46(1): 65–70.Find this resource:
17.The Support Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995; 274(20): 1591–8.Find this resource:
18.Waldrop DP, Meeker MA. Communication and advance care planning in palliative and end-of-life care. Nurs Outlook. 2012; 60(6): 365–9.Find this resource:
19.Johnson RW, Zhao Y, Newby LK, Granger CB, Granger BB. Reasons for noncompetion of advance directives in a cardiac intensive care unit. Am J Crit Care. 2012; 21(5): 311–20.Find this resource:
20.Schickedanz AD, Schillinger D, Landerfeld CS, Knight SJ, Wialliams BA, Sudore RL. A clinical framework for improving the advance care planning process: Start with patients’ self-identified barriers. J Am Geriatr Soc. 2009; 57: 31–9.Find this resource:
21.McMahan RD, Knight SJ, Fried TR, Sudore RL. Advance care planning beyond advance directives: Perspectives from patients and surrogates. J Pain Symptom Manage. 2013; 46(3): 355–65.Find this resource:
22.Pope TM. Legal fundamentals of surrogate decision making. Medical Ethics. 2012; 141(4): 1074–81.Find this resource:
23.Kelly B, Rid A, Wendler D. Systematic review: Individuals’ goals for surrogate decision-making. J Am Geriatr Soc. 2012; 60: 884–95.Find this resource:
24.Wiegand DL. In their own time: The family experience during the process of withdrawal of life-sustaining therapy. J Palliat Med. 2008; 11(8): 1115–21.Find this resource:
25.Hickman RL, Pinto MD. Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill. J Clin Nurs. 2013; 23(5-6):756–65.Find this resource:
26.Jacob DA. Family members’ experiences with decision making for incompetent patients in the ICU: a qualitative study. Am J Crit Care. 1998; 7: 30–6.Find this resource:
28.O’Callahan JG, Fink C, Pitts LH, Luce JM. Withholding and withdrawing of life support from patients with severe head injury. Crit Care Med. 1995; 23(9): 1567–75.Find this resource:
29.Swigart V, Lidz C, Butterworth V, Arnold R. Letting go: family willingness to forgo life support. Heart Lung 1996; 25(6): 483–94.Find this resource:
30.Tilden VP, Tolle SW, Nelson CA, Fields J. Family decision-making to withdraw life-sustaining treatments from hospitalized patients. Nurs Res. 2001; 50(2): 105–15.Find this resource:
31.Tilden VP, Tolle SW, Nelson CA, Thompson M, Eggman SC. Family decision making in foregoing life-extending treatments. J Family Nurs. 1999; 5(4): 426–42.Find this resource:
32.Fritsch J, Petronio S, Helft PR, Torke A. Making decisions for hospitalized older adults: Ethical factors considered by family surrogates. J Clin Ethics. 2013; 24(2): 125–34.Find this resource:
33.Wengler D, Rid A. Systematic review: The effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011; 154(5): 336–46.Find this resource: