Abstract
Dear Editor:
While most seriously ill patients spend most of their last year of life at home, not in hospitals or other institutions, 1 most palliative care programs in the United States are hospital based, offering only episodic care. This represents a mismatch between the services patients need and those they can obtain. Recognizing this service gap, some health care providers have hobbled together home-based palliative care programs. These myriad models range from telephone-based programs to telephonic monitoring and in-person response programs to home visit programs. 2–3 Few of these programs have been rigorously evaluated.3–4
Unintended Consequences of Program Growth Absent Sound Evidence
While heterogeneity in program models reflects innovation in a rapidly evolving field, it raises serious concerns. Typically, for instance, nurses and physicians provide palliative care in these newest models because their time is reimbursable through current payment structures. This expedient approach, however, limits patient access to social and spiritual support and is a far cry from the home-based models that have proven most effective.2,4 Also worrisome is that inconsistent or weak outcomes from diverse models may stymie efforts to develop reimbursement models for these services, for insurers are unlikely to cover ineffective programs. Then, too, insurers and health care providers may grow discouraged and disillusioned by results inconsistent with published studies and consequently curtail or terminate fledgling palliative care services.
Growth in untested models may also have unintended consequences for consumers. It is possible, for instance, that ineffective models of home-based palliative care will spread, with disappointing results for patients and caregivers. Wide differences among programs also may sow confusion among patients and their families. How are consumers to understand and evaluate these unfamiliar programs when among them they use inconsistent eligibility criteria, feature vast differences in care provision, engage different provider disciplines, and offer care via different channels at widely diverse intervals? One home-based palliative care program that we know of, for example, requires that patients meet the hospice six-month life expectancy prognosis for eligibility. This criterion defies basic goals of palliative care programs while fueling consumer fears and confusion. Consumer confusion in turn could dampen demand and slow growth in new home-based programs.
Need to Accelerate Research
The challenge is to identify attributes of the most effective home-based models of palliative care so that evidence can inform the development of new programs. This will require comparative effectiveness trials of diverse models.2,3 These trials take time and run counter to a needling impulse to act quickly. Were it possible to “fail early and fail fast” to identify best practices in palliative care, we would recommend that providers experiment with homegrown programs. But that path to success is questionable in this case. In our experience, providers struggle long and hard to launch new palliative care programs, so they look for up-front assurances that their time and resources will not be wasted. As a result, we believe the prudent strategy is to promote more rapid research, so that new programs emerge from stronger evidence.
With this in mind, we recommend that funders shorten their review cycles for new proposals and resubmissions. Presently, review cycles for studies proposed to the National Institutes of Health or the Patient-Centered Outcomes Research Institute (PCORI) consume months, from letter of intent to final decision. Resubmissions, which are common, require many more months. The upshot is that two years may pass before a new study begins. A faster turnaround could accelerate research without sacrificing rigor.
We also recommend that researchers partner with insurers and health care providers to conduct pragmatic trials in real-world settings that operate as shared savings programs, including accountable care organizations, managed care organizations, medical homes, and bundled care organizations. These structures give providers the flexibility they likely will need to develop and sustain new home-based palliative care programs. This practical approach will help ensure that study findings can be immediately applied by a growing number of providers that operate within similar financial structures. Finally, we recommend that palliative care researchers identify outcome goals that, if achieved early in a study, would terminate the trial so that findings can be acted on in a timely manner.
Many researchers, providers, policymakers, and patient advocates have worked tirelessly in recent years to develop and improve palliative care for seriously ill patients. But we cannot rest on our laurels. Building on past efforts, we need now to accelerate research to ensure that the next generation of palliative care—home-based programs—continues to advance quality care.