"There were more decisions and more options than just yes or no": Evaluating a decision aid for advanced cancer patients and their family caregivers.

OBJECTIVE: Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial. METHOD: Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD). RESULTS: Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews "validating." The key themes were: (1) "the earlier the better" to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning. SIGNIFICANCE OF RESULTS: The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.

Medication kits for managing symptomatic emergencies in the home: a survey of common hospice practice.

INTRODUCTION: Alleviation of symptoms associated with advanced illness and dying is a fundamental goal and core principle of palliative care. Little research exists regarding hospice programs' practices for prescribing, dispensing, and utilizing medication kits in the home for management of uncontrolled symptoms. METHODS: We conducted a telephone survey of all 22 agencies in New Hampshire providing home hospice care. The survey inquired about the timing of medication kit ordering and availability, characteristics of prescribers and pharmacies, kit contents, costs, frequency of use, and perceived impact of kits. RESULTS: All programs' kits contained medications to treat pain and dyspnea, 81% for nausea and vomiting, and 76% for seizures. Eighty-six percent of agencies (18/21) reported that a medication within the kits was used in more than 50% of cases. Eighty-six percent reported the kits often averted hospital or emergency department visits. Oral, sublingual, and rectal routes of administration were common as was topical preparations of combination medications. Three programs included parenteral morphine in kits. Kits cost less than $50 for the majority of programs. CONCLUSION: Hospice programs commonly utilize kits containing prescription medications for the purpose of managing uncontrolled symptoms in the home. There is considerable variation in kit contents and practice. Programs believe that kits diminish emergency department visits and hospitalizations. Research is needed to more fully describe and study the outcomes of these practices.