Patients learn about their illnesses and develop ADs with their primary care provider. The visits occur no later than after a serious illness or terminal illness has been diagnosed. Worsening symptoms, increasing disability, and complications after medical events commonly indicate the need for an AD.14 Weinberg and Stason14 carefully point out the importance of communication and collaboration among primary care providers, patients and families, specialists, hospitalists, skilled nursing facilities (SNFs), and emergency departments (EDs). They recommend 24/7 access to patient information in the medical record (eg, the electronic medical record [EMR]) for covering healthcare proxies, with the patient’s goals always considered for consistent patient management. 

It is essential that providers take ADs into consideration when making clinical decisions. Having ADs available in the EMR is especially important for clinicians who are managing and coordinating the care of patients who are chronically ill.

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Improving communication

Beyea et al4 reported on a statewide intervention in which case managers were assigned to increase the utilization of palliative care and hospice for Medicaid patients. They found that the intervention, based on the use of training components and engagement with local hospice and palliative care providers, was effective in improving communication and referrals for hospice and palliative care.

It has been reported that a stigma is associated with terms like palliative care and hospice, whereas terms like supportive care and care of the critically ill are more readily accepted.15 In 2012, Bernacki and colleagues created a systematic intervention called the Serious Illness Care Program,16 which included provider training, an EMR prompt, and a system for identifying patients for whom services were appropriate. With the intervention, EOL discussions occurred more frequently and earlier (after approximately 3 months), resulting in less anxiety among patients and improved satisfaction with their quality of life. Patients further reported better discussions with family and physicians going forward. 

The study of An et al17 suggests that frank disclosure of terminal status to both patients and their caregivers is a critical first step in advanced care planning. Patients who recognize the terminal nature of their illness were more likely to receive symptom-directed care.17 

Nettina18 discusses the roles of primary care providers in regard to initiating discussions about ADs or living wills, preferences for life-sustaining treatment (including out-of-hospital orders), and the role of a health care proxy. Glatter and Mirarchi19 further emphasize the importance of physician orders for life-sustaining treatment (POLST), which are specific instructions for management after a catastrophic event or desired care during the last stages of a terminal disease, including out-of-hospital events. Murray et al15 produced a toolkit of innovative strategies for promoting palliative care in the community. 

How patients deal with their illness is also significant. A study of patients with chronic heart failure lasting 6 months or longer demonstrated that those who had come to terms with their disease were more likely to have a good quality of life.20 These patients reported more energy; less pain; better emotional reactions, quality of sleep, and mobility; and less social isolation.20 

In a recent study, only one in four patients were familiar with palliative care.11 Investigators in this prospective study of individuals hospitalized for heart failure at their center from 2013 to 2014 found that the patients thought palliative care was actually hospice and mistakenly believed that palliative care was just for those with cancer.11 

It is important that education about palliative care, including frank disclosure regarding terminal disease status to both patients and their caregivers,17 be conducted in a sensitive and supportive dialogue. Primary providers are in a unique position to offer education, support, and palliative management. 

Insurance coverage for EOL discussions

A new policy, implemented on January 1, 2016, allows doctors, nurses, nurse practitioners, and physician assistants to bill for discussions about EOL care.21 This means that older adults will likely have more opportunities to schedule EOL discussions because they will be reimbursable. The Centers for Medicare & Medicaid Services (CMS)22 included this new provision for financial coverage in its regulation package introduced during the summer of 2015. The two Current Procedural Terminology (CPT) codes are 99497 and 99498.22 During the summer of 2016, the CPT codes were activated, and CMS has now approved payment for voluntary EOL counseling as part of its 2016 Medicare payment schedule. Making EOL counseling reimbursable represents a major policy change and will undoubtedly result in more providers offering such visits. 

For this reason, it is essential that primary care providers be familiar with the principles of palliative care because they are responsible for the coordination of care of their patients with serious, complex, or life-threatening disease and illness.23 Consider a patient with CHF whose disease progression is marked by periods of exacerbation and stability. Guidelines for palliative care are essential not only during periods of exacerbation but also during the early stages of treatment as part of the overall treatment modality.23 Review Table 3 as you think through the following case. 

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A case study

Mrs W is a 73-year-old African American woman who presents to your primary care office as a new patient. She is accompanied by her eldest daughter, with whom she resides. Mrs Whalen currently receives Medicare benefits and has recently moved to Florida from Buffalo, NY. Her daughter is now exploring local SNFs, given her mother’s frailty and declining health. The patient can no longer walk or stand for any length of time without experiencing chest pain and shortness of breath. She is having trouble with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). She has been experiencing extreme fatigue and weakness for more than 3 weeks.