Longitudinal Coaching and Decision Support Provided by a Patient-Family Liaison Promotes Goal-Concordant Care

It is well documented that advance care planning (ACP) improves shared decision-making and quality of care. Recognizing the importance of ACP, the Centers for Medicare & Medicaid Services provides an opportunity for providers (physicians, clinical nurse specialists, nurse practitioners, and physician assistants) to bill for conducting conversations with their patients about end-of-life decisions with or without completing relevant legal forms. The two Current Procedural Terminology codes used to report ACP services are 99497 (for the first 30 minutes) and 99498 (add-on for each additional 30 minutes). No specific diagnosis is required for the ACP codes to be billed.

Despite it being a billable service, the completion of ACP remains low. In a large national study published in this edition of the Journal of the American Geriatrics Society, Gupta et al analyzed the Medicare fee-for-service beneficiary decedent data from 2017 for presence or absence of billed ACP visits (none, >1 month before death) and their association with six measures of end-of-life healthcare utilization or intensity (inpatient admission, emergency department visit, intensive care unit [ICU] stay and expenditures within 30 days of death, in-hospital death, and first hospice within 3 days of death).¹ They found that of the 237,989 decedents reviewed, a mere 6.3% of patients had a billed ACP visit. Further analyses of the decedents’ healthcare utilization patterns in the last month of life revealed that 52.8% had visited the emergency room, 48.0% were hospitalized, 18.5% were admitted to the ICU, and 21.7% died in the hospital. The authors state that patients who are given an opportunity to complete ACP and memorialize their preferences are less likely to utilize ineffective and burdensome treatments in the last phase of life, and we agree with them. Additionally, we believe that the completion of a billable ACP visit with a provider is necessary but not sufficient to facilitate goal-concordant care for all seriously ill older adults. We argue that it is vital that patients and families are provided with longitudinal structured coaching and ongoing decision support throughout the serious illness process. We advocate for a longitudinal model and have described some examples, as below:

In a single-site, randomized, clinical trial,² we have shown that a longitudinal structured coaching and ongoing support model is effective in an outpatient oncology setting. Lay health workers were formally trained (80-hour online training and 4-week clinical observation of a palliative team) to serve as liaisons and provide support to older adults through a systematic protocol that involved an initial 30-minute telephone conversation with the patient, followed by 15-minute, twice-monthly conversations by telephone or in person for a period of 6 months or until patient death, whichever came first. This intervention proved to increase documentation of goals of care, patient satisfaction, and hospice utilization while concurrently decreasing costs of care.

The longitudinal patient-family liaison model has been used successfully in the novel coronavirus pandemic. The median time³ between the occurrence of the first coronavirus disease 2019 (COVID-19) symptom to death is 14.0 days (range = 6–41 days) and is even shorter in older adults, at 11.5 days (range = 6–19 days). A highly contagious disease, COVID-19 has a largely unpredictable course and a high percentage of fatality, especially in older adults. COVID-19 patients have a high prevalence of delirium,⁴ and many afflicted older adults become critically ill and are unable to make medical decisions. To complicate this already terrible situation even further, hospitals caring for COVID-19 patients have been forced to curtail visitation rights of family members in an effort to contain disease spread and due to shortage of personal protective equipment. Thus, hospitalized COVID-19 patients are completely isolated from their loved ones. Family members of COVID-19 patients are themselves facing the tremendous physical, financial, and emotional toll imposed by the pandemic in addition to being forced to make decisions for their hospitalized loved ones, sight unseen. To allay the desperate worries of the family members of COVID-19 patients, the NewYork-Presbyterian/Columbia University Medical Center created a virtual, longitudinal family liaison program,⁵ staffed by a team of anesthesiologists, surgeons, and nurse practitioners. All liaisons were experienced critical care clinicians who were well familiar with the medical and the organizational cultural intricacies of the ICU. Each liaison was assigned a caseload of up to 12 critically ill COVID-19 patients, and they followed their patients longitudinally until death or discharge, whichever came first. Liaisons reviewed the patient’s electronic medical records, attended work rounds using a secure telemedicine platform, and communicated with the family members daily to provide coaching and decision support. By communicating with the patient’s family members (who were prohibited from visiting their loved ones in the ICU by hospital policy) daily and serving as their “eyes and ears,” the family liaisons soon became trusted guides. The liaisons took care to serve as patient-family advocates by providing nonjudgmental support in a time of terrible uncertainty. The palliative care team worked closely with the family liaisons to conduct family meetings and to help proxies make critical care decisions, including decisions about instituting or withdrawing life support, as applicable.

A third example is an ongoing nurse-led longitudinal coaching and support intervention⁶ (one initial virtual visit, followed by monthly 30-minute telephone calls for 11 months) for patients with cognitive impairment and their families. Primary outcome measures are completion of ACP and facilitation of goal-concordant care.

Although most Americans will benefit by and prefer comfort-focused care in the last phase of life, they are still subjected to nonbeneficial ineffective and burdensome treatments. As many as 30% of Medicare beneficiaries are admitted to the ICU at the end of life.⁷ High-intensity treatment measures have been shown to be associated with worse patient quality of life, poorer outcomes, worsened quality of death, and worse bereavement adjustment. Beyond the physical and emotional toll imposed on patients, these treatments also impose an enormous financial toll on individuals and on the nation. The National Bureau of Economic Research⁸ estimated an individual’s out-of-pocket healthcare spending in the last year of life to be $11,618 on average, with the 90th percentile equal to $29,335, the 95th percentile equal to $49,907, and the 99th percentile equal to $94,310. Another recent study⁹ estimated the national financial toll due to overtreatment and provision of low-value care to be roughly $158 to $226 billion per year.

Timely ACP can make a positive impact on the care of seriously ill patients. The problem is that although clinicians want to do care planning in advance when the patient is still healthy, most patients want to do “just-in-time care planning,” postponing end-of-life discussions to when they are too sick to have them. Unfortunately, serious illness can rob patients of their decisional abilities, defaulting the decision-making to unwitting family members. One solution to this quandary is to institute a longitudinal patient-family liaison coaching and support model by which trained personnel can work with the patient (and proxy) over time, develop trusting relationships, provide ongoing support, and thereby facilitate goal-concordant care. Although this is an additional service, the costs are likely to be offset by preventing overtreatment in the ICU.

It is vital to note that the requisite skills of the patient-family liaison vary with the venue of care and the patient’s illness. Outpatient support to ambulatory cancer patients can be provided by trained lay health workers. Trained nurse navigators may be better equipped to serve as patient-family liaisons for patients with waning cognition and Alzheimer’s disease and related dementias. For critically ill patients admitted to the ICU, trained and trusted clinicians proficient with the critical care intricacies and the local culture of the ICU may be better suited to serve as patient-family liaisons. As the patient-family liaison work can be done virtually, retired physicians and surgeons who are familiar with the critical environment may be engaged in doing so once they are trained in patient-centered communication skills.

The patient-family liaison’s role should have a clearly defined code of conduct—the liaison’s role should be to serve as a neutral sounding board and a cultural guide, helping patients and family members navigate the complex healthcare system. Further research is needed to fully understand the impact of longitudinal coaching and support by patient-family liaisons on promoting goal-concordant care across venues.