Hospice Buffalo

IntroductionCaring for chronically or terminally ill individuals comes with unique challenges and circumstances that are specific to each situation and individual involved. Studies on caregiving have often concentrated on the negative physical and emotional impacts on caregivers, while more recent literature depicts a more complex and multidimensional experience. The purpose of the current study was to better elucidate the scope of challenges and benefits attributed to caring for a loved one with a serious, life-limiting illness.MethodsA total of 18 informal family caregivers were enrolled in this study, which used a semi-structured interview format. Interviews were conducted at the participants' place of residence, all within New York State (United States of America). All interviews were audio-recorded, transcribed, and analyzed using inductive thematic analysis with consensual qualitative research components. The qualitative analysis team was comprised of three core members and one outside auditor.ResultsFour main themes emerged: (1) Burdens on the Caregiver, (2) Navigating Caregiving, (3) The Positives, and (4) Evolution of Relationships. Additionally, the latent theme of Cognitive Dissonance was identified across interviews.DiscussionFindings suggest that family caregivers of individuals with terminal or life-limiting illness experience complex, and often contradictory feelings, which may differ from perceptions by those not providing similar care to a loved one. The data suggest that clinicians working with the caregiving population should explore the duality of caregiving beyond just the anticipated negative impacts.

Little is known about community-based transitions to home hospice care. We used a Straussian grounded theory approach to understand the basic social process of care transitions that patients and their caregivers use when electing hospice care. Participants were recruited from hospice agencies serving 3 counties in New York State. Data were collected through 7 interviews of patients, patient-and-caregiver dyads, and a hospice nurse (n = 10). Data were analyzed using the constant comparative method. Our results generated an emerging grounded theory of the hospice care transition processes rooted in maintaining personhood and autonomy. There were 5 contemporaneous steps: (1) recognizing futility and pursuing comfort; (2) seeking help and input as health declines; (3) shopping for the right services, overcoming obstacles, and self-referring to hospice care; (4) attending to the business of dying while living; and (5) processing and expressing emotions. Although not central to the care transition process, an additional step was identified that occurred after the transition to hospice care: planning for an uncertain future. The hospice care transition process identified in the study reveals important mechanistic targets for the development of interventions that promote patient-centered hospice care transitions in the home setting.

Purpose: This study assessed the feasibility and preliminary efficacy of the Photographs of Meaning Program for Adolescent and Young Adult cancer patients and survivors (POM-AYA). Methods: POM-AYA is a structured 10-week meaning-based intervention in which participants post photographs and accompanying narratives through a social media platform. Measures of depression, overall quality of life (QoL), and spiritual well-being were assessed on consent (T1), after completing the 10-week intervention (T2) and 2 months' postintervention (T3). Participants also completed a satisfaction questionnaire and follow-up semi-structured interviews. Results: Thirty AYA cancer patients and survivors (ages 17-36) were enrolled in the study. At T2, depressive symptoms were significantly lower and QoL was significantly higher compared with T1. These gains were maintained at T3. There were no significant differences in reported spiritual well-being across the study period. Overall, participants reported high rates of study satisfaction in both the survey and qualitative feedback. Conclusion: POM-AYA appears to be a potentially beneficial, widely accessible intervention in reducing depressive symptoms and increasing QoL in AYA cancer patients and survivors.

Background Tardive dyskinesia (TD) is a condition that was first described nearly 60 years ago. Despite the tremendous amount of research on pathophysiology and numerous follow-up studies to understand the course and prognosis of TD, effective treatment of the condition contin- ued to elude us until recently. Methods We review and summarize clinical literature on TD, as well as provide an update on new treatments available. Results The emergence of tetrabenazine as a treatment modality decreased suffering and improved quality of life for patients. New agents such as valbenazine, deutetrabenazine, and branched-chain amino acids continue to provide relief to patients, without the troublesome side effects of tetrabenazine. Conclusions There continues to be a substantial prevalence rate for the condition with the use of first-generation and second-generation antipsychotics. Because of the potential irreversible nature, legal implication, and high prevalence of TD, we advocate for more research on new treatments for the disorder.

The processes of aging and confronting mortality are often accompanied by unique psychological challenges. From the perspective of positive psychology, such challenges can yield opportunities for growth, including increased wisdom. This qualitative study explored 15 terminally ill hospice patients’ perspectives on wisdom, the dying process, and the meaning of life using consensual qualitative research methods. Most participants cited humility as a key component of wisdom, emphasizing that “Wisdom is when we realize ‘I don’t really know much’.” Other components of wisdom included self-knowledge, rationality, experiential learning, listening to and learning from others, and sharing knowledge with others. Participants also suggested that the process of facing illness and death presents opportunities for positive growth, including changing priorities and learning to appreciate life more fully in the present moment. In considering the sources of meaning in their lives, participants emphasized relational connections, personal growth, spirituality, vocational fulfilment, and living a full life. Participants also shared their reflections on important past experiences and regrets. Lastly, participants offered advice to others based on their experiences facing illness and mortality. Implications for psychological care of the dying and future research are discussed.

Delirium is a common syndrome present at the end of life and causes significant distress for patients and families. Sleep disruption is a common precipitating factor for delirium and restoration of sleep may be instrumental in attenuating symptoms. In this cases series, we present three patients who were unresponsive to escalating doses of standard delirium medications, but whose delirium resolved once improved sleep was achieved using Pentobarbital. In a fourth patient, delirium was successfully treated where neuroleptics were contraindicated. Pentobarbital has been shown to reduce the time to sleep onset, decrease the number of body movements during sleep and spontaneous awakenings and increase the total sleep time. Pentobarbital may provide an additional treatment option for patients whose delirium is refractory to standard management approaches.

Patients facing serious or life-threatening illnesses account for a disproportionately large share of Medicaid spending. We examined 2004-07 data to determine the effect on hospital costs of palliative care team consultations for patients enrolled in Medicaid at four New York State hospitals. On average, patients who received palliative care incurred $6,900 less in hospital costs during a given admission than a matched group of patients who received usual care. These reductions included $4,098 in hospital costs per admission for patients discharged alive, and $7,563 for patients who died in the hospital. Consistent with the goals of a majority of patients and their families, palliative care recipients spent less time in intensive care, were less likely to die in intensive care units, and were more likely to receive hospice referrals than the matched usual care patients. We estimate that the reductions in Medicaid hospital spending in New York State could eventually range from $84 million to $252 million annually (assuming that 2 percent and 6 percent of Medicaid patients discharged from the hospital received palliative care, respectively), if every hospital with 150 or more beds had a fully operational palliative care consultation team.