The Experience of Transition From Hospital to Home Hospice

Unexpected Disruption

Ann Marie Dose, PhD, RN, ACNS-BC; Lori M. Rhudy, PhD, RN; Diane E. Holland, PhD, RN; Marianne E. Olson, PhD, RN

Disclosures

Journal of Hospice and Palliative Nursing. 2011;13(6):394-402. 

In This Article

Abstract and Introduction

Abstract

Little is known about the transition between hospital dismissal and onset of hospice services from the patient/family perspective. The specific aim of this phenomenological study was to describe the lived experience of patients and families transitioning from hospital to home hospice care. Nineteen patient and family units transitioning from hospital to home hospice care participated in this study. They photographed objects, people, and events during the hours or day(s) of this transition. Semistructured interviews occurred as soon as possible following the first home hospice visit. Data collection and analysis were concurrent, using validated transcripts and field notes. Patients and families experienced unexpected disruption during this transition, because of lack of clarity regarding hospice, their scramble to get ready, and a sense of open house once they arrived home. In this study, the transition experience extended beyond initiation of hospice care, with uncertainty about what hospice care would mean and disruptions in the preconceived expectations about hospice. Health professionals define the transition period as an "event," and the patients/families experience it as a "process." Implications for practice, education, and research are provided.

Introduction

Approximately 41.6% of Americans who died in 2009 received care from a hospice program at the end of life.[1] The decision to accept hospice care is often made in the hospital setting, but the onset of hospice services occurs in the home after discharge. Patients released from the hospital to home hospice services confront complex and unique challenges that threaten their physical, emotional, and spiritual well-being.[2] The period between leaving the hospital and the first home hospice visit is one in which the patient and family are particularly vulnerable.

Hospital discharge planning is the primary process for managing care transitions from the hospital to the next setting. Managing care transitions involves clear communication among providers about changes to the medication regimen and effective pain and symptom management, teaching newcare responsibilities for informal caregivers, and explanation of complex discharge instructions.[3] Despite the abundance of studies related to hospital discharge planning, transitioning care from hospital to home remains problematic. Problems include lapses in quality and patient safety, gaps in communication between hospital and homecare providers, less than ideal patient handoffs, ill-prepared family caregivers, and confusion regarding coordination of care.[4] Inadequate transitions are known to lead to suboptimal outcomes, the development of new or worsening symptoms, unplanned rehospitalizations, medical errors, and other adverse events.[3,5–9] In addition, hospital staff frequently overestimate patient/family knowledge and capabilities or inadequately assess their abilities to provide care,[3] and clinicians may not be as attuned to specialized end-of-life (EOL) care deemed critical by patients and their families.[2]

Although the importance of identifying continuing care needs and ensuring continuity of care across settings is not a new idea, little is known about the patient/family experience between care received in the hospital and the onset of home hospice care. Numerous studies have been conducted with family members after a patient's death to assess the quality of EOL care,[10–16] but in these studies, bereaved family members recalled events prior to death, weeks or months later, and from their personal experiences.[17] Waldrop and colleagues[18] reported how caregivers themselves transitioned to EOL caregiving while receiving home hospice services, but no studies were found directly exploring the transition between care received in the hospital and the onset of home hospice services from both the patient and family perspective.

The purpose of this qualitative study was to describe the experience of the transition from care received in the hospital to onset of home hospice services from both the patient and family perspective. Preparing and educating patients and their families for a successful discharge from the hospital and transition to home hospice care require that we know what they will encounter at home. We cannot adequately prepare patients and their families for care at home until we have a better understanding of what they will experience during the time between care provided by the "sending" (hospital) and "receiving" (home hospice) providers.

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