Helping Your Patients Plan End-of-Life Care*
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When seriously ill patients are nearing the end of life, they and their families sometimes find it difficult to decide on whether to continue medical treatment and, if so, how much treatment is wanted, and for how long. In these instances, patients rely on their healthcare providers for guidance.
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Patients Need More Effective Advance Care Planning
In the best of circumstances, patients and their families will have talked with you about their end-of-life wishes, including the length and invasiveness of treatment, likelihood of success, overall prognosis, and the quality of life during and after their treatment. Frequently, however, such discussions do not take place. Thus, if a patient becomes incapacitated without any documentation as to his or her wishes, you and the patient’s family must then make decisions based on what you think the patient would want.[1,2]
Studies funded by the Agency for Health Research and Quality (AHRQ) indicate that many patients have not participated in effective advance care planning. AHRQ research reveals that—
- Less than 50% of the severely or terminally ill patients studied had an advance directive in their medical record
- Only 12% of patients with an advance directive had received input from their healthcare provider in its development
- Between 65% and 76% of physicians whose patients had an advance directive were not aware that it existed
- Having an advance directive did not increase documentation in the patient’s medical chart regarding patient preferences
- Advance directives helped make end-of-life decisions in less than half of the cases where a directive existed
- Language in advance directives was usually too nonspecific and general to provide clear instruction
- Surrogates named in the advance directive often were not present to make decisions or were too emotionally overwrought to offer guidance
- Healthcare providers were only about 65% accurate in predicting patient preferences and tended to make errors of under treatment, even after reviewing the patient’s advance directive
- Family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development
Patients With Chronic Illness Also Need Advance Planning
Because primary care practitioners are in the best position to know when to bring up the subject of end-of-life care, you are well suited to initiate and guide advance care planning discussions. Such discussions are usually reserved for people who are terminally ill or whose death is imminent, yet research indicates that people suffering from chronic diseases also need advance care planning.
More than 75% of people who die in the United States are Medicare beneficiaries age 65 and older, and 70% of them will die from chronic conditions such as heart disease, cerebrovascular disease, chronic obstructive pulmonary disease (COPD), diabetes, Alzheimer’s disease, and renal failure. The most recent data suggest that although cancer is the second leading cause of death among older Americans, only 30% of deaths in people age 65 and older are from cancer.
People with terminal cancer generally follow a predictable course, or “trajectory,” of dying; many maintain their activities of daily living until about two months prior to death, after which most functional disability occurs.[5,6] In contrast, people with chronic diseases typically go through periods of slowly declining health, marked by sudden severe episodes of illness requiring hospitalization from which the patient recovers. This pattern may repeat itself over and over until the patient dies. For these patients, estimating a time of death is much more difficult than for patients dying of cancer. At this time, patients may become too incapacitated to speak for themselves, and decisions about which treatments to provide or withhold are usually made jointly between the patient’s healthcare provider and family or surrogate. In fact, a recent study suggests that most surrogates wanted decision-making control or to share responsibility with the clinician regarding decisions about end-of-life support.
Patients Value Advance Care Planning Discussions
According to patients who are dying and their families who survive them, lack of communication with physicians and other healthcare providers causes confusion about medical treatments, conditions and prognoses, and the choices that patients and their families need to make.[10-12] One study has indicated that about one-third of patients would discuss advance care planning if you brought up the subject and about one-fourth of patients were under the impression that advance care planning was only for people who were very ill or very old.
Other studies have shown that discussing advance care planning and directives with their doctor increased patient satisfaction among patients age 65 years and older.[13,14] Patients who talked with their families or healthcare providers about their preferences for end-of-life care—
- Had less fear and anxiety
- Felt they had more ability to influence and direct their medical care
- Believed that their healthcare providers had a better understanding of their wishes
- Indicated a greater understanding and comfort level than they had before the discussion
- Were less likely to receive aggressive medical care and were referred earlier to hospice
Finally, patients who had advance planning discussions with their healthcare providers continued to discuss and talk about these concerns with their families and were encouraged to change their advance directives if their conditions changed. Such discussions enabled patients and families to reconcile their differences about end-of-life care and could help the family and healthcare provider come to an agreement if they should need to make decisions for the patient.[16,17]
A Structured Process for Discussions Is Helpful
Researchers have suggested a four- or five-part process that healthcare providers can use to structure discussions on end-of-life care:
- Initiate a guided discussion. Healthcare providers should share hypothetical scenarios and treatments applicable to their patient’s particular situation and find out the patient’s preferences for providing or withholding treatments under certain situations. These scenarios should cover a range of possible prognoses and any disability that could result from treatment.
- Introduce the subject of advance care planning and offer information. Patients should be encouraged to complete both an advance directive and durable power of attorney (see Box). The patient should understand that when these documents don’t exist, patients essentially leave treatment decisions to their healthcare providers and family members. Healthcare providers can provide this information themselves; refer the patient to other educational sources, including brochures or videos; and recommend that the patient talk with clergy or a social worker to answer questions or address concerns.
- Prepare and complete advance care planning documents. Advance care planning documents should contain specific instructions. Terms such as “no advanced life support” are too vague to offer guidance on specific treatments. If a patient does not want to be on a ventilator, the healthcare provider should ask the patient if this is true under all circumstances or only specific circumstances.
- Review the patient’s preferences on a regular basis and update documentation. Patients should be reminded that advance directives can be revised at any time. Some research indicates that patients often change their minds when confronted with the actual situation or as their health status changed.
Research supported by the AHRQ suggests an additional step, which some researchers do not support.
- Apply the patient’s desires to actual circumstances. Conflicts sometimes arise during discussions about end-of-life decision making. AHRQ-sponsored research indicates that if patients desired nonbeneficial treatments or refused beneficial treatments, most physicians stated that they would negotiate with them, trying to educate and convince them to either forgo a nonbeneficial treatment or to accept a beneficial treatment. Physicians stated that they would also enlist the family’s help or seek a second opinion from another physician.
Box: Advance Planning Directives
Advance directives are also known as living wills. These are formal legal documents specifically authorized by state laws that allow patients to continue their personal autonomy and that provide instructions for care in case they become incapacitated and cannot make decisions.
An advance directive may also be a durable power of attorney.
A durable power of attorney is also known as a healthcare proxy. This document allows the patient to designate a surrogate—a person who will make treatment decisions for the patient if the patient becomes too incapacitated to make such decisions.
In 2004, a national task force was convened to initiate the implementation of the nationwide “POLST” (Physician Orders for Life-sustaining Treatment) paradigm. The core of the program is the POLST Paradigm form: a brightly colored, medical order form, used to write orders indicating life-sustaining treatment wishes for seriously ill patients. The form accomplishes two major purposes:
- It turns treatment wishes of an individual into actionable medical orders
- It is portable from one care setting to another
A POLST Paradigm form is most appropriate for seriously ill persons with terminal illnesses or advanced frailty characterized by significant weakness and extreme difficulty with personal care activities. The POLST form complements the Advance Directive and is not intended to replace it. The form is signed by you and in most states, the chosen decision maker’s signature, as well. The original form always remains with the patient—either in the patient’s medical record if in a healthcare facility or on the front of the refrigerator if the patient is at home. In states where POLST has been implemented, healthcare providers are trained to make a copy of the form and to give the original back to the patient before being discharged or transferred. Use of the form is voluntary and can be cancelled at any time. To see the POLST form, learn more about POLST and check whether your state has a POLST paradigm, click here.
By discussing advance care planning and preparing appropriate documentation, healthcare providers and patients can improve patient satisfaction with care, avoid painful family conflict, and provide care at the end of life that is in accordance with the patient’s wishes.
* Adapted and updated from Advance Care Planning: Preferences for Care at the End of Life. Agency for Healthcare Research and Quality, Issue #12, 2003.
Jill Shuman, MS, ELS
Published on July 19, 2011
- Bomba PA, Vermilyea D. Integrating POLST into palliative care guidelines: a paradigm shift in advance care planning in oncology. J Natl Compr Canc Netw. 2006;4(8):819-829.
- Yung VY, Walling AM, Min L, et al. Documentation of advance care planning for community-dwelling elders. J Palliat Med. 2010;13(7):861-867.
- Kass-Bartelmes BL, Hughes R, Rutherford MK. Advance Care Planning: Preferences for Care at the End of Life. Rockville, MD: Agency for Healthcare Research and Quality; 2003. Research in Action Issue #12. AHRQ Pub No. 03-0018. http://www.ahrq.gov/research/endliferia/endria.pdf
- National Institute on Aging. Older Americans 2010: Key Indicators of Well-Being. July 2010. http://www.agingstats.gov/agingstatsdotnet/main_site/default.aspx
- Lynn J. Perspectives on care at the close of life. Serving patients who may die soon and their families: the role of hospice and other services. JAMA. 2001;285(7):925-932.
- Parks SM, Winter L. End of life decision-making for cancer patients. Prim Care. 2009;36(4):811-823.
- Lynn J, Schall MW, Milne C, et al. Quality improvements in end of life care: insights from two collaboratives. Jt Comm J Qual Improv. 2000;26(5):254-267.
- White DB, Curtis JR, Lo B, Luce JM. Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers. Crit Care Med. 2006;34(8):2053-2059.
- Johnson SK, Bautista CA, Hong SY, et al. An empirical study of surrogates’ preferred level of control over value-laden life support decisions in intensive care units. Am J Respir Crit Care Med. 2011;183(7):915-921.
- Teno JM, Fisher E, Hamel MB, et al. Decision-making and outcomes of prolonged ICU stays in seriously ill patients. J Am Geriatr Soc. 2000;48(5 Suppl):S70-S74.
- Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476-2482.
- Hanson LC, Danis M, Garrett J. What is wrong with end-of-life care? Opinions of bereaved family members. J Am Geriatr Soc. 1997;45(11):1339-1344.
- Smucker WD, Ditto PH, Moore KA, et al. Elderly outpatients respond favorably to a physician-initiated advance directive discussion. J Am Board Fam Pract. 1993;6(5):473-482.
- Tierney WM, Dexter PR, Gramelspacher GP, et al. The effect of discussions about advance directives on patients’ satisfaction with primary care. J Gen Intern Med. 2001;16(1):32-40.
- Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673.
- Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room”. JAMA. 2000;284(19):2502-2507.
- Winter L, Parker B. Current health and preferences for life-prolonging treatments: an application of prospect theory to end-of-life decision making. Soc Sci Med. 2007;65(8):1695-1707.
- Emanuel LL, Danis M, Pearlman RA, Singer PA. Advance care planning as a process: structuring the discussions in practice. J Am Geriatr Soc. 1995;43(4):440-446.