Primary care providers address all aspects of health throughout the lifespan. They plan and organize age- and situation-appropriate screening and treatment.
In addition, they should identify care preferences in preparation for death, a process known as advance care planning (ACP).1
In 1990, the federal Patient Self-Determination Act required all patients admitted to a hospital or other healthcare facility be informed about and provided the opportunity to complete ACP.2-6
This planning can be in the form of advance directives, a medical power of attorney, or a healthcare proxy.2-6
More than 20 years later, fewer than 20 percent of patients admitted to a healthcare facility have completed paperwork for ACP.3,7,8
Once hospitalized, the stress of illness makes end-of-life decisions difficult.2,4,9Addressing this issue in primary care, with a familiar healthcare provider prior to crisis, might be more successful.
ACP discussions are important to the delivery of comprehensive care. They should be performed in primary care settings while the patient is healthy and able to make thoughtful decisions.6,10-12 The routine nature of the primary care setting allows the development of plans for end of life that focus on feasible patient goals based on medical condition and level of health. For this planning to occur, primary providers need to recognize the value of ACP and include it in routine health discussions.13
Why Primary Care?
ACP is best approached in a dialogue introduced by the provider, but shaped based on the values, wishes, desires and goals of the patient.5,9 The periodicity and continuity of the primary care relationship allow for ACP discussions to be introduced, fostered and maintained in a comprehensive and supportive manner.
Research shows patients are interested in receiving information on ACP from their primary care providers.9 Studies also show patients are unlikely to broach the topic of ACP unless it is first mentioned by a healthcare provider.4,14 Importantly, interactive conversations between patients and providers about ACP are effective. Studies show such conversations can increase completion rates for advanced directives by up to 71 percent.10,15
The continuity of primary care also permits comprehensive assessment of patient readiness, barriers to planning, and existing end-of-life plans. Even if exact plans are not known, the provider can revisit the patient's ideas and concerns over time, educating as needed.
Initiating the Discussion
Time allows for more informed decisions, as well as a higher likelihood of completed planning.1,15 Review of ACP in primary care, especially within the context of the electronic health record, can increase the accessibility, accuracy and longevity of patient plans.6,11
One way clinicians can trigger the introduction of ACP discussions is through patient milestones.9 Age, severity of disease, annual visits and new patient visits may be used to help increase the likelihood of remembering to initiate ACP.
No ideal age for initiating ACP has been identified. Much of the available research focuses on planning with adults older than 65, since this group represents the majority of people who die each year.7,8 As well, these patients often experience chronic disease.7,8 Given that anyone at any age can experience an accidental injury or life-limiting illness, it is reasonable and appropriate to address ACP with younger and healthier patients.
One approach is to address ACP with any patient older than 18 or 21 who is capable of making his or her own healthcare decisions.1,5,16,17 Younger patients may welcome early discussions about ACP.3,5 Providers have also found that ACP with younger patients benefits the patient-provider relationship.17,18
Beyond age, providers may examine the health and functional status of the patient to determine the value and necessity of ACP.
Chronic health conditions certainly warrant discussion about ACP.7,8,10
Worsening function, multiple diagnoses, frailty or mental decline should also trigger discussions.
Ideally, the topic should be addressed early in the diagnosis or disease progression, so that the patient has the time and capacity to participate in adequate end-of-life planning.
Annual or New Visits
An appropriate time to introduce ACP is during an annual or periodic health screening exam.9,16
Another approach is to broach the topic at every new patient encounter. However, new patients may not be ready or comfortable enough with the clinician to explore this topic.3
Regardless of the approach, using a patient milestone to help trigger planning will reinforce the routine.
ACP as a Process
Of the many barriers to ACP, provider reluctance to initiate discussion may be one of the largest impediments.19,20
Although ACP may be viewed as a professional obligation, many clinicians fail to make it a priority with all patients. This likely contributes to the low completion rate of ACP.3,7,8
Many providers feel uncomfortable raising the topic, or feel that the discussion takes too much time.19
ACP is an ongoing process that evolves over time, much like the health behaviors of diet and exercise.18,21,22 The diagram accompanying this article illustrates how to address ACP in a primary care setting over time.
Through the process of initiating ACP, establishing preferences, recording them in the medical record and periodically revisiting the topic, the ACP is formed and solidified, but always amendable.
Click to view larger graphic.
Before starting an ACP discussion, prepare for it.
Be aware of the patient's medical history and functional limitations, to anticipate the direction of the discussion.14
The degree of detail at each point in the discussion will depend on the patient's age, health, degree of comfort, readiness and willingness to participate.1,11
Family members and/or potential healthcare proxies should be included whenever possible.1,6,18
An understanding of local laws about end-of-life documentation is vital, as is knowing how to access necessary paperwork.5,7
Be prepared to listen carefully, minimizing distractions or interruptions.13,23 Also be prepared to clarify statements, correct any unrealistic expectations and to summarize the discussion at the conclusion of the interaction.2,5
Note any resistance on the part of the patient or family; this is an opportunity for education and further discussion later. It also provides an opening to suggest that the patient continue these conversations informally at home.1,2,4,9 Finally, the key points of the conversation must be documented in the medical record, even if no concrete decisions are made.18
Getting it Right
Consider certain caveats when discussing ACP with patients and their loved ones.22
Don't assume planning has already been completed or the patient's plans are well known within the family unit.2,9 Cultural aspects of patient care may need to be considered and may also influence the conversation.1,2,12
Patient and family responses to ACP may be unexpected, with potential conflict among family members or between the patient and his or her loved ones. Anticipate the possibility of personally disagreeing with the patient's plan.12
The ultimate goal of ACP is forming a clear plan that establishes and honors patient wishes that can be seamlessly enacted at the end of life.
However, the process of planning can be as valuable as the documentation. ACP tends to normalize the topic of death over time, decreasing fear and increasing comfort and preparedness.14
With preparation, practice and time, ACP skills will improve.13,18 The discussion need not be lengthy; 15 minutes may be enough time to introduce and discuss the main issues and record patient preferences.2 The key to success resides in the routine of ongoing planning.
References for this article can be accesed here.
Caroline Keeney is a family nurse practitioner in the University of Utah's palliative care service in Salt Lake City. She has completed a disclosure statement and reports no relationships related to this article.