Barbara Head

Development of a Telehealth Intervention for Head and Neck Cancer Patients

Treatment for head and neck cancer precipitates a myriad of distressing symptoms. Patients may be isolated both physically and socially and may lack the self-efficacy to report problems and participate as partners in their care. The goal of this project was to design a telehealth intervention to address such isolation, develop patient self-efficacy, and improve symptom management during the treatment experience. Participatory action research and a review of the literature were used to develop electronically administered symptom management algorithms addressing all major symptoms experienced by patients undergoing treatment for head and neck cancers. Daily questions and related messages were then programmed into an easy-to-use telehealth messaging device, the Health Buddy(R). Clinician and patient acceptance, feasibility, and technology issues were measured. Using participatory action research is an effective means for developing electronic algorithms acceptable to both clinicians and patients. The use of a simple tele-messaging device as an adjunct to symptom management is feasible, affordable, and acceptable to patients. This telehealth intervention provides support and education to patients undergoing treatment for head and neck cancers.

Terminal restlessness as perceived by hospice professionals

Any hospice professional can identify the syndrome known as terminal restlessness, and all would agree that it is extremely distressing to patients as well as their families and care-givers. Often, caregivers cannot ameliorate the anguish many patients experience at life’s end. Many clinicians assert that the causes are physical resulting from medication toxicity, organ shutdown and the associated metabolic changes, pain, urinary or fecal retention, dyspnea and related hypoxia, and sepsis. Yet, many also credit psychosocial and spiritual distress as precipitating factors. The purposes of this study were twofold: to compare the perceptions of practicing hospice clinicians with the literature related to terminal restlessness, and to determine if their experience with terminal restlessness agreed with the components of the one established scale for terminal restlessness found in the literature. In general, the study findings corresponded to the literature in regards to frequency, definition, causes, and behavioral manifestations of terminal restlessness. The clinicians in the study supported the impact of psychosocial and spiritual causes of terminal restlessness and defined the phenomenon in terms of time period; emotional, physical, and spiritual distress; changes in consciousness; and increased activity. However, the study did not support the inclusion of impaired consciousness and withdrawal as comprised in the terminal restlessness scale.

The Interdisciplinary Curriculum for Oncology Palliative Care Education (iCOPE): Meeting the Challenge of Interprofessional Education

UNLABELLED Background: Interprofessional education is necessary to prepare students of the health professions for successful practice in todays health care environment. Because of its expertise in interdisciplinary practice and team-based care, palliative care should be leading the way in creating educational opportunities for students to learn the skills for team practice and provision of quality patient-centered care. Multiple barriers exist that can discourage those desiring to create and implement truly interdisciplinary curriculum. DESIGN An interdisciplinary faculty team planned and piloted a mandatory interdisciplinary palliative oncology curriculum and responded to formative feedback. SETTING/SUBJECTS The project took place at a large public metropolitan university. Medical, nursing, and social work students and chaplains completing a clinical pastoral education internship participated in the curriculum. MEASUREMENTS Formative feedback was received via the consultation of an interdisciplinary group of palliative education experts, focus groups from students, and student evaluations of each learning modality. RESULTS Multiple barriers were experienced and successfully addressed by the faculty team. Curricular components were redesigned based on formative feedback. Openness to this feedback coupled with flexibility and compromise enabled the faculty team to create an efficient, sustainable, and feasible interdisciplinary palliative oncology curriculum. CONCLUSION Interdisciplinary palliative education can be successful if faculty teams are willing to confront challenges, accept feedback on multiple levels, and compromise while maintaining focus on desired learner outcomes.

Just Give Me Hope: Lived Experiences of Medicaid Patients With Advanced Cancer

The purpose of this phenomenological exploration was to describe the lived experiences of persons diagnosed with advanced cancer who receive Medicaid. Themes emerged from the transcribed interviews of 10 participants in accordance with the cancer trajectory. Before diagnosis, participants were uninsured or underinsured and had more severe symptoms prior to late diagnosis. Upon diagnosis, they desired hopeful, respectful communication and experienced strong emotional reactions. There was also an abrupt change in the use of health care resources. During cancer treatment, they experienced social isolation from family and friends while receiving strong psychosocial support from the health care team. Throughout the cancer trajectory, they focused on living, reclaiming normalcy, and expressed resiliency and spirituality. Findings support the need to recognize the “fighting spirit” of patients regardless of prognosis or socioeconomic status; the impact of hopeful, respectful communication; and the value of oncology social work assistance when navigating the cancer experience. Lack of health care coverage prior to severe symptoms prevented earlier diagnosis and contributed to poor physical outcomes. Medicaid eligibility enabled these patients to receive quality health care and focus on living beyond cancer.

Evaluation of an Interdisciplinary Curriculum Teaching Team-Based Palliative Care Integration in Oncology

For students of the health care professions to succeed in today’s health care environment, they must be prepared to collaborate with other professionals and practice on interdisciplinary teams. As most will care for patients with cancer, they must also understand the principles of palliative care and its integration into oncology. This article reports the success of one university’s effort to design and implement an interdisciplinary curriculum teaching team-based palliative care in oncology which was mandatory for medical, nursing, social work, and chaplaincy students. Quantitative evaluation indicated that students made significant improvements related to palliative care knowledge and skills and readiness for interprofessional education. Qualitative feedback revealed that students appreciated the experiential aspects of the curriculum most, especially the opportunity to observe palliative teams at work and practice team-based skills with other learners. While there exist many obstacles to interprofessional education and hands-on learning, the value of such experiences to the learners justifies efforts to initiate and continue similar programs in the health sciences.

Palliative care case management: increasing access to community-based palliative care for Medicaid recipients.

Purpose: The purpose of this pilot project was to integrate palliative care principles and practices into the day-to-day operations of a Medicaid managed care provider. This was accomplished through the following five activities: (1) employment of an experienced palliative care nurse and social worker to serve as expert role models and consultants to the case management staff; (2) development of a palliative care training curriculum for case managers; (3) provision and evaluation of the training; (4) identification of appropriate patients, provision of palliative care case management (PCCM), and tracking of outcomes; and (5) development of a resource/reference manual for case managers. Primary practice setting: The project involved a managed care organization providing Medicaid services to patients residing in both urban and rural settings. Findings/conclusions: Expert staff was hired and modeled effective PCCM. This, as well as the training program, had significant influence on both the palliative care knowledge and attitudes of existing case managers. Involved patients demonstrated improved symptom management and satisfaction with care. Patient scenarios demonstrated desirable outcomes in healthcare utilization, and timely, appropriate hospice referrals were realized. Implications for case management practice: Integrating PCCM into the practices of a provider of Medicaid managed care can result in positive patient outcomes, improved utilization of healthcare services, and related savings for the managed care provider. Such a program can increase access to community-based palliative care for Medicaid recipients with life-threatening illnesses. PCCM can address the multiple needs of younger patients with serious illness who are not yet ready to forego curative efforts.

Researching end-of-life care: challenges, strategies, and opportunities.

This article explores the challenges involved in research at the end of life and suggests related strategies and opportunities home care and hospice organizations can use to become involved in end-of-life research.

Improving medical graduates’ training in palliative care: advancing education and practice

The needs of an aging population and advancements in the treatment of both chronic and life-threatening diseases have resulted in increased demand for quality palliative care. The doctors of the future will need to be well prepared to provide expert symptom management and address the holistic needs (physical, psychosocial, and spiritual) of patients dealing with serious illness and the end of life. Such preparation begins with general medical education. It has been recommended that teaching and clinical experiences in palliative care be integrated throughout the medical school curriculum, yet such education has not become the norm in medical schools across the world. This article explores the current status of undergraduate medical education in palliative care as published in the English literature and makes recommendations for educational improvements which will prepare doctors to address the needs of seriously ill and dying patients.

Preparing Nursing Students for Interprofessional Practice: The Interdisciplinary Curriculum for Oncology Palliative Care Education.

Interprofessional educational experiences for baccalaureate nursing students are essential to prepare them for interprofessional communication, collaboration, and team work. Nurse educators are ideally positioned to develop and lead such initiatives. The purpose of this article is to describe the development and implementation of an interprofessional education (IPE) project involving students in nursing, medicine, social work, and chaplaincy. The Interdisciplinary Curriculum for Oncology Palliative Care Education project uses team-based palliative oncology education as the framework for teaching students interprofessional practice skills. The need for IPE is apparent, but there are very few comprehensive, successful projects for nurse educators to use as models. This article describes the development of the curriculum by the interprofessional faculty team. Issues encountered by nursing faculty members as they implemented the IPE experience are discussed. Solutions developed to address the issues and ongoing challenges are presented. This project can serve as a model of a successful IPE initiative involving nursing students.

A Systematic Review of Telehealth in Palliative Care: Caregiver Outcomes

OBJECTIVE Telehealth interventions have proven efficacy in healthcare, but little is known about the results of such interventions in palliative care. We conducted a systematic review to evaluate caregiver outcomes related to palliative telehealth interventions. MATERIALS AND METHODS We searched multiple databases for articles published between January 2003 and January 2015 related to telehealth in palliative care. Two hundred twenty-one articles were considered; nine of these met study inclusion criteria. Data on study design, population, interventions, methods, outcomes, conclusions, and methodological quality were extracted and evaluated by three investigators. RESULTS Of the nine studies, five measured caregiver quality of life, three measured caregiver anxiety, and two measured caregiver burden. All the studies measuring caregiver quality of life showed no significant difference after telehealth interventions. The caregiver anxiety score decreased after the intervention in two studies, and one study reported significantly reduced caregiver burden. Although feasibility of or caregiver satisfaction with the telehealth intervention was not the focus of this review, most studies reported such findings. Of the nine studies, the majority were rated as having moderate quality using the Cochrane Collaborations tool for assessing risk of bias. CONCLUSIONS This systematic review suggests there is evidence of overall satisfaction in caregivers who undergo a telehealth intervention, but outcomes reported were often not substantial. Methodological flaws and small sample sizes negatively affected study quality. More rigorous research to test and evaluate such palliative interventions is needed.