In theory, quality measurement and reporting generally benefits patients and their families, as (PDF link) public data on quality increases transparency and provider accountability. It also may benefit providers as a tool for quality assurance and improvement; however, the evidence does not always provide a clear picture. Unique challenges exist for patients receiving home care who are near the end of life but have not yet enrolled with hospice and those in nursing homes. Critical to supporting quality measurement of care provided to these patients is a new approach that is tailored to palliative care expectations rather than the traditional rehabilitative care measures now applied as part of the OASIS home care quality assessment system.
Many home care agencies offer open access programs for patients who want to receive palliative care but are not ready to enroll with hospice, although we lack estimates of the size of this patient population nationally. The challenge is that it is unclear how to measure and report quality of care for such patients without penalizing home care agencies for meeting patients’ palliative goals of care. Current OASIS measures track patients getting up out of bed, eating, providing flu shots, and other services appropriate for rehabilitative care but less relevant for patients who desire palliative and hospice care.
Under the existing system, home care agencies that uphold the patient’s wishes for palliative care may be penalized by providing care consistent with palliative care goals. Surely to improve quality of care for patients with progressive, incurable illnesses who desire home care support but have not yet elected hospice care, a better system is needed – that both helps ensure quality of care and does not inadvertently penalize home care agencies providing services for this population.
Three approaches have been discussed by policy makers and researchers.
The first approach would exclude patients whose episode of care ends in death. This would be a relatively simple adjustment to the OASIS quality monitoring system currently; however, it would not address the need for valid quality monitoring for this group of patients seeking palliative care from home care agencies.
The second approach would be to risk-adjust the quality measures so that home care agencies are not penalized for having greater numbers of palliative or pre-hospice patients. (PDF link) Risk-adjustment can be fraught with problems related to documentation, small numbers, and inadequate statistical (PDF link) modeling of risk. Additionally, proper risk-adjustment can take years to develop, validate, and implement reliably.
A third approach would be to categorize such patients as “palliative home care” users and use a set of quality measures designed around the core elements of high quality hospice and palliative care to assess their quality of care. These quality measures include physical and emotional symptom management including pain, nausea, anxiety, depression, and other common symptoms that negatively affect quality of life. Quality measures focusing on these core care domains have been developed and endorsed by the National Quality Forum. The Centers for Medicare & Medicaid Services (CMS) implemented seven of these quality measures nationally in the Hospice Quality Reporting Program. RTI International, under the contract with CMS, analyzes the national data to understand the (PDF link) quality of hospice care; however, these quality measures have not been used nationally for patients receiving palliative care mainly because of challenges in defining the relevant patient population. Palliative care quality measures should be assessed for patients receiving palliative care in various settings (e.g., hospital and home) and from various providers (e.g., physicians, home health agencies and hospice agencies). Furthermore, the measures should be assessed for patients who could benefit from palliative care not are not yet receiving such care in order to quantify potential access issues. Despite these inherent challenges, a palliative care quality measurement system would mitigate the unintended effects of penalizing home care agencies that care for extending care to patients with palliative goals of care while still ensuring the highest quality of patient-centered care for all patients in the home care setting.