Abstract
Rooted in the ethos of palliative care is a deep appreciation for issues related to patient quality. Specialty palliative care clinicians routinely assist patients and their caregivers in focusing on issues of their “quality of life” or “quality of time [remaining].” But despite recognizing the importance of “quality” (oftentimes defined as “the degree of excellence of something”) in how patients live and thrive, discussions within the field regarding an increased focus on quality of care delivery can be fraught with concern and anxiety. How can a field that embraces personalization of care and the art of medicine attempt to standardize its practice? And more importantly, should it?
An oft-repeated mantra in the circles of health care leadership and business marketing is “consistency builds trust.” Few things are more comforting to a person than knowing what to expect. Humans—with few exceptions—prefer to not be surprised, particularly in times of increased complexity and high emotion (i.e., an average day in the world of specialty palliative care). This is human nature. Think about wedding planning. Couples and families go to painstaking lengths for several months to years to ensure no surprises occur on the wedding day. They look for a consistent track record of performance by the various vendors involved (e.g., regularly being responsive to communications and having a long record of high customer ratings) to reduce worry and ensure confidence that the magical day will go smoothly.
In the world of specialty palliative care, the need for consistency in clinical practice goes for both referring clinicians who request palliative care consultations and the patients with serious illness who they serve. Referring clinicians expect a certain set of services to be provided by the specialty palliative care team, and deviations from those expectations over time can lead to disappointment (when expectations are not met) or lead to distrust (when what is “consistent” is actually inconsistence service). Furthermore, patients are increasingly becoming familiar with the concepts of hospice and palliative care. Yet, when care delivery is inconsistent with expectations, there is a risk of being perceived as untrustworthy. For example, our own Center to Advance Palliative Care's definition of “palliative care” states that “the goal is to improve the quality of life for both the patient and the family.” Yet, how consistent is the field's practice of specifically assessing and managing the quality of life of family members? Do we all use a consistent method to deliberately assess family members' concerns, needs, and issues? Even if the entire field does not have a consistent practice, do at least all the clinicians in a health care organization?
Furthermore, our own National Consensus Panel for Quality Palliative Care guidelines 1 propose that specialists evaluate and manage distress across eight domains (e.g., symptoms, spiritual needs, and psychological needs). In my own clinical practice, regrettably I sometimes do not give attention to all of the domains. These are my own inconsistencies, which I worry will make referring clinicians be disappointed (in expecting one set of evaluations, but receiving another) and making some patients experience better or worse outcomes (as a result of variable attention to a set of issues). Yet, just as every engaged couple has different needs, preferences, and values, patients with serious illness are not one-size-fits-all. There is beauty in finding a uniquely tailored dress; in fact, most brides would not value a dress design consistent with those worn by their friends or relatives. So how can specialty palliative care deliver a personalized service while embracing consistent practice?
The world of manufacturing faces a similar challenge—how to deliver a high-quality product at scale, while tailoring that product to the customers' needs. The terminology manufacturers use is “mass customization,” which health care quality leaders have recently adopted. The idea is to add variance, personalization, and customization because it is absolutely warranted, at the latest possible moment in the life cycle of product development. For example, in manufacturing a car, an automotive company does not make day-to-day changes in the cars they produce, just because a different manager is on duty that day. Many cars and trucks have the same fundamental pieces (e.g., chassis, engine, seat belts, and seats), and little energy is spent in deviating from the tried-and-true components that ensure structural integrity (chassis), performance (engine), and safety (seat belts). But naturally, customers want some personalization based on needs and preferences, such as leather versus cloth seats. In the concept of mass customization, after the foundational components are consistently delivered, then attention is turned to making customizations. Although there is a mix of standard features and custom features, the balance is always tipped toward the former. Such an approach both ensures a consistently high-quality product, while meeting the individual needs of the customer.
Palliative care now has a detailed set of guidance that dictates what fundamental components must be delivered to achieve high-quality care. These include various quality measures, guidelines, and clinical guidance that derive from research studies, real-world evidence, and expert consensus. In this issue of the journal, readers will find a few reports that add to our collective understanding of what practices should be consistently delivered, including those involving spiritual care (Kutcher et al.) and symptom assessment of children (Madden et al.). As the evidence continues building, it is also time to agree that (1) there are known set of foundational care processes we must all deliver (or if exceptions are made, those are deliberately arrived at) and (2) we will hold ourselves accountable to delivering these foundational elements at the individual, organizational, and field-wide levels. Only then can patients, their caregivers, referring clinicians, health systems, and payers know that palliative care delivery is trustworthy, because its delivery is consistent.