Journal: The American journal of hospice & palliative care
Little is known regarding the perceptions of parents about end-of-life care for their children. This study describes parental perceptions of the care of hospitalized, terminally ill children in the areas of (1) clinical management, (2) interdisciplinary support, and (3) pain and symptom management.
Background:African Americans typically underuse hospice care; this study explores their end of life attitudes.
Hospice palliative care volunteer work-being with dying persons and their often distraught family members-has the potential to take an emotional toll on volunteers. The aim of this review article is to examine the types of stressors hospice palliative care volunteers typically experience in their work and how they cope with them. The results of this literature review suggest that hospice palliative care volunteers do not generally perceive their volunteer work as highly stressful. Nonetheless, a number of potential stressors and challenges were identified in the literature, along with some strategies that volunteers commonly employ to cope with them. The implications for volunteers and volunteer training/management are discussed.
Pain can have a devastating effect on the quality of life of patients in palliative medicine. Thus far, majority of research has been centered on opioid-based pain management, with a limited empirical evidence for the use of nonopioid medications in palliative care. However, opioid and nonopioid medications such as nonsteroidal anti-inflammatory drugs have their limitations in the clinical use due to risk of adverse effects, therefore, there is a need for more research to be directed to finding an alternative approach to pain management in comfort care setting. The purpose of this article is to discuss a potential new drug that would adequately alleviate pain and enhance quality of life without significant risks of adverse effects that would limit its use. Naltrexone is a reversible competitive antagonist at μ-opioid and κ-opioid receptors, which when used at standard doses of 50 to 150 mg was initially intended for use in opioid and alcohol use disorders. However, it was discovered that its use in low doses follows alternate pharmacodynamic pathways with various effects. When used in doses of 1 to 5 mg it acts as a glial modulator with a neuroprotective effect via inhibition of microglial activation. It binds to Toll-like receptor 4 and acts as an antagonist, therefore inhibiting the downstream cellular signaling pathways that ultimately lead to pro-inflammatory cytokines, therefore reducing inflammatory response. Its other mode of action involves transient opioid receptor blockade ensuing from low-dose use which upregulates opioid signaling resulting in increased levels of endogenous opioid production, known as opioid rebound effect. Low dose naltrexone has gained popularity as an off-label treatment of several autoimmune diseases including multiple sclerosis and inflammatory bowel disease, as well as chronic pain disorders including fibromyalgia, complex regional pain syndrome, and diabetic neuropathy. Low-dose naltrexone (LDN) may also have utility in improving mood disorders and the potential to enhance the quality of life. This article will therefore propose the potential off-label use of LDN in management of nonmalignant pain in the palliative medicine setting.
Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical-psychological-social-spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients' inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients' altered awareness of time/space/body and patients' altered social connectedness.
As the spread of the novel coronavirus disease 2019 (COVID-19) continues worldwide, health care systems are facing increased demand with concurrent health care provider shortages. This increase in patient demand and potential for provider shortages is particularly apparent for palliative medicine, where there are already shortages in the provision of this care. In response to the developing pandemic, our Geriatrics and Palliative (GAP) Medicine team formulated a 2-team approach which includes triage algorithms for palliative consults as well as acute symptomatic management for both patients diagnosed with or under investigation (PUI) for COVID-19. These algorithms provided a delineated set of guidelines to triage patients in need of palliative services and included provisions for acute symptoms management and the protection of both the patient care team and the families of patients with COVID-19. These guidelines helped with streamlining care in times of crisis, providing care to those in need, supporting frontline staff with primary-level palliative care, and minimizing the GAP team’s risk of infection and burnout during the rapidly changing pandemic response.
Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.
Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present.
This study captured the end-of-life care experiences across various settings from bereaved caregivers of individuals who died in residential hospice.
End-of-life dreams and visions (ELDVs) are well documented throughout history and across cultures with impact on the dying person and their loved ones having profound meaning. Published studies on ELDVs are primarily based on surveys or interviews with clinicians or families of dead persons. This study uniquely examined patient dreams and visions from their personal perspective. This article reports the qualitative findings from dreams and visions of 63 hospice patients. Inductive content analysis was used to examine the content and subjective significance of ELDVs. Six categories emerged: comforting presence, preparing to go, watching or engaging with the deceased, loved ones waiting, distressing experiences, and unfinished business.