Scaling Home-Based Palliative Care to Better Serve the Seriously Ill Population

The most basic and significant function of home-based palliative care (HBPC) programs is to match patient needs with budgeted, allocated, and appropriate resources—in particular, human capital. Prior to my role at University of Colorado, I worked as the palliative care systems director for the largest health care provider in Colorado. In this role, I oversaw the development, expansion, and delivery of palliative care services in collaboration with the system’s hospitals, home health agencies, hospices, long-term care facilities, and ambulatory centers.

As palliative care systems director, there were several HBPC programs in our health system, serving the adult and pediatric seriously ill populations. One of our adult programs served a rural community, which also provided palliative care consultation to the local hospital. The remaining adult programs served the urban and surrounding suburban areas. For background, in Colorado, Advanced Practice Registered Nurses (APRNs), including Clinical Nurse Specialists and Nurse Practitioners, are licensed as independent practitioners, and both are eligible for prescriptive authority. In the adult HBPC programs, the APRNs were the primary clinician with access to social workers and chaplains to meet patient and family needs. Our pediatric HBPC program primarily served patients and their parents with social workers, chaplains, music and art therapists, and registered nurses.

In my role, I worked with our HBPC programs to take a deep dive into our operations, and take inventory of our census. What we found was that patients with minimal needs (e.g., visits without interventions, custodial-based, unskilled visits) had been receiving the same resource intensity as patients with maximal needs (e.g. physical and non-physical symptom assessment and interventions, medication management, psycho/social and spiritual/cultural support). This misallocation of resources had seriously diminished our HBPC’s availability to the seriously ill population in greatest need.

Availability[1], in this sense, refers to the adequate supply of health system services and resources to meet patient demand—in HPBC programs, services/resources include the competencies and areas of expertise of each member on the interdisciplinary team (all of whom are trained to provide high-quality palliative care). Naturally, many HBPC administrators spend a lot of time building availability: working with teams for greater and greater allocations in order to expand the available pool of resources. On the other hand—and receiving less attention—accommodation[1] refers to how HPBC resources are deployed (referral/scheduling processes, timeliness to access the clinician, and allocation of human capital) in serving patients.

It was clear that our HBPC programs were performing a high-stakes juggling act. We had waiting lists, maxed-out caseloads, and a longer-than-expected patient length of stay. And we couldn’t expand our available pool of resources any further—not through the regular channels, anyway. However, by turning our attention to the less-glamorous process of accommodation (matching our resources to needs - less or no resource to those with fewer needs; more resource to those with greater needs), we discovered a back channel to additional, highly-prized availability. We succeeded in freeing up additional resources to match and pace with the needs of our patient population.

Again, to increase availability, shrink our waitlists, and not overburden our teams, the key was to streamline accommodation to “right size” resource delivery. In other words, the interdisciplinary teams needed to ensure delivery of palliative care in the right place, at the right time, to the right patient. And in short, we needed to ensure proper allocation by triaging our existing resources. This is how we accomplished growth in availability:

To do this, members of the palliative care teams including social workers, chaplains, and APRNs determined what high, moderate, and low acuity would mean in terms of physical, psycho/social, spiritual/cultural, and ethical/legal distress. We then developed and leveraged an acuity tool to stratify the needs of patients and families.

The algorithm that used for our acuity tool was developed based on the National Consensus Project (NCP) Guidelines[2] and NCP domains, and we purposefully developed it to depend on “statements of need” versus “severity scores”. For example, instead of rating a patient’s symptom score as “absent”, “mild”, “moderate”, or “severe” (or a likert-based rating system) we assessed if the patient’s symptoms were higher-than-tolerated or not at goal (dichotomous yes/no responses).

After using our acuity tool to identify and then triage patient needs, we could match patient/family needs with both the appropriate clinician and the appropriate urgency/frequency of encounters. This was not just a one-off triaging assessment: as patient/family needs were met, those patients/families were cycled to a lower level of clinician encounter frequency, e.g., from weekly to every other week, then to every three weeks, then to monthly, and so on. Of course, this trend could also move in the other direction, toward higher encounter frequency, depending on patient acuity needs.

All in all, implementing a HPBC acuity tool (a) helped pinpoint patient/family need; (b) facilitated reallocation of our resources; (c) maximized each team member’s ability to practice to the fullest extent of their education, training, and licensure; and importantly, (d) eased waiting list tension. We were able to bring more high-need patients/families into our programs and match service intensity to their evolving needs without taxing our finite resources.

Implementing the acuity tool also had unintended consequences.

Some clinicians experienced changes in their months-long relationships with patients/families. Instead of seeing that same friendly face every week, encounters might become less frequent, sometimes yielding (understandable) resistance by clinician and patient/family. Sometimes words like “abandonment” and phrases like “less caring” came up during weekly interdisciplinary team meetings, especially when we started to implement the acuity tool. To address these important sentiments, during the team meetings, we reviewed the wait list of patients needing the HBPC program. We openly discussed the implications of patient/family suffering that could be alleviated by triaging current patients in the HBPC program, shifting our finite resources to help others in need.

In addition, a constellation of ethical issues arose when clinicians determined what level of service is “good enough”.[3] For example, some clinicians felt conflicted in moving a patient/family unit from a higher level of acuity to a lower level of acuity. The outcome in this downward movement (less face to face engagement), interfered with the clinician’s principal of beneficence (moral obligation of contributing to the benefit of patients and families). This conflict initially resulted in team discussions and were usually resolved with utilitarian thinking (e.g. providing the greatest good for the greatest number patients). To set clear expectations with new patients/families, clinicians established anticipatory guidance to help all vested parties understand that the HBPC service may not be long-term.

Another unintended consequence was the need for continuous refinement of the acuity tool. Revising a tool actively used in real-world conditions has pragmatic advantages, but constant refinement can lead to decision-making fatigue and version-control confusion.

Prioritizing/triaging health care resources beyond the ED or surgical waiting lists receives little public discussion; meanwhile, behind the scenes, palliative care services work frenetically to develop internal systems of balancing demands with available resources.[3,4] There is a great need for HBPC programs to improve triage and accommodation and thereby expand availability for those most in need among the seriously ill population. This is especially true given the state of financial reimbursement for palliative care programs in the United States where fee for service reimbursement only covers 20-60% of operating expenses.[5]

In the past several years, research has focused on validating needs assessment tools[6], prioritizing access[3], expanding access[7], triaging[8], and determining appropriate levels of ongoing need for palliative care. More research and pragmatic program evaluation is necessary for HBPC and these foci align with the recent call from the National Institute of Nursing Research (PAR-19-321, PAR-19-320) for Palliative Care in Home and Community Settings.