Six million Americans are in need of palliative care (PC) every year. A very large proportion of these persons suffer xerostomia, oral pain or infection, soft tissue pathology, and other oral health issues. Poor oral health limits food choices, interferes with social interactions, and compromises quality of life (QoL). It can also affect one's abilities to tolerate chemotherapy or radiotherapy, accelerate cognitive decline, and cause life-threatening septicemia, aspiration pneumonia, deep neck space infection, and even death, causing preventable suffering for persons receiving palliative care (PRPC) and their family caregivers (FCG). Oral health is substantially undervalued under the current practice model. Oral health has not yet been addressed in the national PC practice guideline. Physicians often overlook oral health, and thus it seems to be less importance to them. Discouraged by this false impression, PRPC and FCG also often undervalue oral health. As a result, the oral health needs of PRPC seldom receive appropriate assessment and treatment, leading to greater comorbidity, and suffering. Meanwhile, dentists often lack training in end-of-life dental care, resulting in terminally-ill nursing home residents, including those in the last 3 months of life, receiving extensive dental surgery and other aggressive treatment. These evidence clearly demonstrates that the current practice model fails to appropriately address the oral health needs of PRPC. A new clinical paradigm is urgently needed to address this crisis. In response, the proposed study aims to develop an oral health intervention to improve oral health awareness and increase dental referrals for PRPC attending the University of Iowa Palliative Care (UIPC) clinic. This study consists of two phases. In Phase I, oral examinations and symptom reviews will be conducted with approximate 32 PRPC to identify their oral health conditions, after which qualitative structured interviews will be completed with the PRPC and their FCG to review their oral health findings and attempt to understand the dyad's perceived needs, treatment goals, and care preferences corresponding to each of the documented conditions. Based on this information and the inputs of a PC expert panel, we will develop and refine the proposed intervention in Phase II, which is expected to include a training module for the PC team, an oral symptom review form, a personalizable training module for dyads, and a dental referral guide for PC providers. The UIPC medical team, 20 newly-recruited PRPC/FCG dyads, and a supportive care nurse (the PRPC/FCG trainer) will then be recruited to evaluate the feasibility of integrating the proposed intervention into daily PC practice. The feasibility test will focus on five domains: acceptability, demand, implementation, practicality and integration. Successful completion of this study will provide foundational data to develop the first interdisciplinary collaborative PC practice in the nation that includes dentistry. Building on this innovative model and study results, our next step will be to examine how this intervention, as a formal component of daily PC practice, can improve oral health and QoL for PRPC, providing essential evidence toward the development of a new clinical paradigm to improve the quality of care for PRPC.
