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Advance Care Planning in Terminal Illness

A Small Descriptive Pilot Study

The Agency for Healthcare Research and Quality (AHRQ) defines advance care planning as "preferences for care at the end of life,"1 but a review of the literature shows that it is more complex. Preferences for care at the end of life include treatment choices and decision-making, which require thorough patient understanding. Because regularly conducted patient discussions are recommended,2 this is a role responsibility for NPs and PAs.

The primary goal of advance care planning in terminal illness is to improve patient and family outcomes. We planned a survey to gain greater insight into the current communication strategies, tools and role preparedness of NPs in this area. Our study surveyed NPs only, but the information is applicable to PA practice. 

We performed an internet search for nurse practitioners in Atlanta and surrounding areas; it yielded 34 potential participants. The surveys we mailed to these participants included a cover letter explaining the objectives and a consent form to obtain participant permission. These were distributed to NPs in practice areas of internal medicine (23%), oncology (68%) and pulmonary care (9%).

Fourteen NPs responded to the survey, for a participation rate of 41%. The specialty breakdown was as follows: internal medicine N = 3 (21%), oncology N = 7 (50%) and pulmonary care N = 4 (29%). The responses from this sample showed that advance care planning in terminal illness was more common in oncology and pulmonology. Internal medicine NPs were least likely to conduct advance care planning. Oncology nurse practitioners were most likely to have specialty training or certifications to aid in advance care planning discussions. Reported obstacles in advance care planning are consistent with the literature findings.


Advance care planning often occurs late in the course of illness. In more than 200,000 patients with cancer who died at a comprehensive cancer center, the majority of DNR orders were signed on the day the patients died.3 A review of 2,498 patients with metastatic cancer shows that a mere 20.3% had their code status preference recorded.4 Although a nationwide study with a focus on general practitioners indicates that general practitioners postpone end-of-life discussions until late in the disease trajectory, having cancer is positively correlated with the occurrence of these discussions.5

Advance care planning requires collaboration and strategies that are more complex than patient preferences for care at the end of life. Vital components are advocacy, advanced directives, alternative treatment, collaboration of care, coordination of care, cultural sensitivity, DNRs, decision-making, effective communication, ethics, holistic practice, illness awareness, living wills, patient rights/preferences, power of attorney, etc. Although national guidelines state that providers should address advance care planning with cancer patients annually,6 challenges result from estimating illness timelines in other terminal conditions (i.e. chronic lung disease).7

Because nurse practitioners bridge the gap from physician shortages to medical care coverage for the aging population,8 preparedness to provide advance care planning for the terminally ill is needed.

Research included in the Cancer Outcomes Research and Surveillance Consortium shows that 73% (n = 2155) of participants with stage IV lung or colorectal cancer receive end-of-life care communication. However, these communications occur around one month prior to death.5 Most end-of-life conversations by general practice physicians take place in the inpatient setting,5 which suggests that communications are not taking place in advance. In a descriptive, cross-sectional pilot study, 18% to 20% of patients received chemotherapeutic agents in the 2 weeks before death.9

Predicting illness timelines in other illnesses is more challenging. However, important triggers for end-of-life discussions have been identified for diagnoses such as chronic obstructive pulmonary disease.10

Research shows that patients' understanding of their diagnoses or prognoses are linked to educational levels and age.11 Higher levels of education are associated with greater understanding of illness and understanding of illness decreases with age. Truth-telling and disclosure versus nondisclosure about prognostic information are cultural considerations that exist to protect the patient. For example, in Chinese culture, it is a popular belief that poor prognostic disclosure will destroy the patient's hope. However, a logistic regression analysis found that anxiety occurrence increases in Chinese patients when they have unclear prognostic awareness.12

Electronic Assistance for the Process

With implementation of EHR, it is possible to have advance care planning documentation for patients that is easily accessible for collaborating providers. This is important for coordination and continuity of care. For example, when an attending healthcare provider is off duty and another healthcare provider is covering, information about advance directives, DNRs, living wills, power of attorney and religion is an integral part of honoring patients' preferences. The model Physician Orders for Life-Sustaining Treatment specifies patients' advance care planning information into transferable medical orders.13 Unfortunately, legal aspects and differing state regulations are obstacles to implementing processes like these. Another tool is the Provider Signout for Scope of Treatment.14 Tools such as these offer continuity of care because they are an effective means of communicating patients' preferences.

Holistic care includes awareness of physical, psychosocial, spiritual and cultural aspects, and the implications for advance care planning are significant. For example, initiating discussions and decision-making early versus late in the disease trajectory is an important factor, because as physical and cognitive function declines, competency is affected. The Patient Self-Determination Act seeks to avoid problems like this.15 End-of-life discussions should occur early when patients' are medically stable.5

Survey Results

The survey findings showed that advance care planning is most likely to occur in oncology settings, after treatment failure or terminal diagnosis. In pulmonary care, advance care planning is most likely to occur with poor prognosis, treatment failure and terminal diagnosis. In internal medicine, advance care planning was most likely in cases of terminal illness, poor prognosis, disease recurrence, treatment failure and terminal diagnosis.

EHR triggers for revisiting an advance care plan were reported by only 1 of 14 respondents. Unfortunately, there are no standard templates to guide an NP or PA through advance care planning. Specialty training and/or certifications are predominant in oncology, which aids in advance care planning.

Reported obstacles to advance care planning in terminal illness are patient resistance/stigma to hospice, misconceptions about hospice/palliative care, time, provider comfort levels, family wanting nondisclosure for the patient, and denial by the patient/family. When discussions take place, documentation is included in the office notes or EHR system. This information is shared with other providers by word of mouth, EHR notes and/or written communication such as copies of office notes or letter.


Although the sample was small, the results of our survey suggest that NPs and PAs should take the lead in advance care planning for the patient. Regardless of the practice specialty, the nurse practitioner can increase confidence and competency for advance care planning through specialty certifications, educational training and/or experience. We hope that future care planning for chronic, terminal and geriatric care will include an algorithm tool, anticipatory guidance model and/or standardized EHR triggers to regularly address and update advance care plans.

Lisa C. Logue is a family nurse practitioner at the Longstreet Cancer Center in Gainesville, Ga. Toni O. Barnett is a family nurse practitioner at the University of North Georgia Appalachian Nurse Practitioner Clinic in Dahlonegas, Ga. She is also a professor in the NP program at the University of North Georgia.


1. Agency for Healthcare Research and Quality. Advance care planning: Preferences for care at the end of life.

2. Agency for Healthcare Research and Quality. Advance care planning: Preferences for care at end of life.

3. Cohen A, Nirenberg A. Current practices in advance care planning: implications for oncology

 nurses. Clin J Oncol Nurs. 2011;15(5):547-553.

4. Temel JS, et al. Code status documentation in the outpatient electronic medical records of patients with metastatic cancer. J Gen Intern Med. 2009; 25(2):150-153.

5. Abarshi E, et al. Discussing end-of-life issues in the last months of life: a nationwide study among general practitioners. JPM. 2011;14(3):323-330.

6. National Guideline Clearinghouse. Advance care planning.

7. Crawford A. Respiratory practitioners' experience of end-of-life discussions in COPD. Brit J Nurs. 2010;19(18):1164-1169.

8. Frellick M. The nurse practitioner will see you now. Advanced practice providers fill the

 physician gap. Hosp Health Netw. 2011;85(7):44-49.

9. Zhou G, et al. Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncol Nurs Forum. 2010;37(6):400-410.

10. Gelberg J, McIvor RA. Overcoming gaps in the management of chronic obstructive

 pulmonary disease in older patients: new insights. Drugs Aging. 2010;27(5):367-375.


11. Corli O, et al. Illness awareness in terminal cancer patients: An Italian study. Palliat Med. 2009;23(4):354-359.

12. Chi Ho, Chan W. Being aware of the prognosis: How does it relate to palliative care patients'

anxiety and communication difficulty with family members in the Hong Kong Chinese context? J Palliat Med. 2011;14(9):997-1002.

13. Hickman SE, et al. The POLST (physician orders for life-sustaining treatment) paradigm to improve end-of-life care: Potential state legal barriers to implementation. J Law Med Ethics. 2008;36(1):119-140.

14. Newport K, et al. The "PSOST": Providers' signout for scope of treatment. J Palliat Med. 2010;13(9):1055-1058.

15. Duke G, et al. Factors influencing completion of advanced directives in hospitalized patients. Int J Palliat Nurs. 2007;13(1):39-43.



very concise,informative article. Taking a course over ethics dealing with these specific situations so this article is very helpful. Thank you.

Pedro Mercado,  rn,  la cadenita.adcFebruary 27, 2016
brownsville, TX


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