Establishing goals of care is of extreme importance when older adults with life-limiting illnesses are being treated. A patient’s basic understanding of palliative care is foundational as disease progresses and as available treatments become more and more burdensome. Palliative care is given when a serious or life-threatening illness or disease is diagnosed, with care ensuing at any point in time.7 It is defined as “patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.”7 It is now recognized that palliative care can be offered at any time during a life-threatening illness, even together with life-prolonging therapies.8 

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Challenges in palliative care 

Multiple challenges for quality EOL care in the United States include the increasing numbers of aging Americans, the enormous cultural diversity in the United States, obtaining access to the right care in complex systems, and the lack of availability of palliative care services, especially in smaller healthcare facilities.2,3 In the United States, health care is costly in a system focused on curative rather than supportive care, and there is a lack of communication and coordination for EOL processes.1 Beyea et al4 found that even though they are available in some areas, hospital and palliative care programs and services are underutilized, especially by low-income patients. Early dialogue is necessary to honor the preferences of dying patients and their families.1 Head et al9 reported additional challenges for palliative care, including patients with complex medical comorbidities, financial challenges, and language barriers.

A recent study found that the quality of EOL care differs by diagnosis, with significantly better EOL care given to patients who have cancer or dementia than to those with end-stage renal disease (ESRD), cardiopulmonary failure, or frailty.10 Khan et al11 reported that even after hospitalization for CHF, patients experience prolonged symptoms of fatigue, dyspnea, pain, and anxiety, with fewer than 10% of them receiving palliative care.

The primary care provider’s role

Many patients expect their primary care providers to take the lead and rely on their expertise for guidance in making decisions for the best care. Unfortunately, many primary care practices are not proactive in addressing such needs.2,3 It is important not only to inform patients about the trajectory of their illness(es) and treatment plans but also to have an ongoing dialogue with them regarding care options and preferences, including conversations with family members.

Key questions, according to Beyea et al,4 include the following: What is your understanding of your current condition? If your health gets worse, what are your goals? What are your fears? Do you have opinions about treatments? These questions need to be explored, preferences should be documented, and follow-up should be provided (Table 2). 

Phillips12 emphasizes that some primary care providers look upon palliative care as services rather than as an approach, a perception that creates barriers in communicating with patients. Using an “approach” to palliative care in primary practice means that practitioners, over the course of a career, embrace and integrate the concept of palliative care with services as part of comprehensive care. Of note is the study by Obermeyer et al,13 which found that physician characteristics are the strongest predictor of whether a patient will be referred to hospice, outweighing even patient age and comorbidities. The take-home message is that primary care providers’ opinions and recommendations matter for patients as they decide on palliative care by addressing patients’ goals and EOL options. Communication and relationships between providers and patients and their families are key. 

O’Neill and Morrison8 describe how palliative care can be appropriately offered to patients at any time and can certainly include restorative and life-prolonging therapies. According to these authors, the primary principles of palliative care include the following: establishing goals of care that are consistent with the patient’s values and preferences; managing symptoms; arranging for ongoing communication between the patient and those involved in the patient’s care; providing psychosocial, spiritual, and common sense support to patients and caregivers; and offering coordination across sites of care. 

Advance directives 

Weinberg and Stason14 offer practical information for initiating advance directives (ADs) in a primary care practice. A provider who knows what a patient’s AD goals are and uses them when making clinical decisions improves the patient’s outcomes, according to numerous studies.1,14 These authors provide specific actionable advice related to ADs. For example, they encourage providers to integrate ADs within their primary care practices by including scheduled sequenced visits (eg, primary care visit and follow-up visit). The primary care visit consists of 30 minutes of face-to-face time with the patient, family members, and/or surrogates to introduce the topic and explain key information; the second visit is for following up, answering questions, and documenting ADs. The ADs are then reviewed at regular intervals.14