Meanings and Experiences of End-of-Life Patients and Their Family Caregivers in Hospital-to-Home Transitions: A Constructivist Grounded Theory Study

Abstract

This study explored the meanings and experiences of patients with terminal chronic diseases and their caregivers, who face the imminence of death in the home environment after hospital discharge. The qualitative study used constructivist grounded theory. The participants were individuals with a terminal chronic illness, discharged to home, and their family caregivers. Data were gathered from in-depth interviews and field notes, and a comparative analysis was conducted to identify categories and codes, according to Charmaz’s theory. The sample consisted of 21 participants. Three inter-related data categories emerged: “Floating between acceptance and resistance: Perceiving the proximity of death”, “Analysing the end from other perspectives: it is in the encounter with death that life is understood” and “Accepting the path: between the love of letting go and the love of wanting to stay”. The categories translate the reconstruction of those facing end-of-life occurring in the home environment. It is amid the imminence of death that life gains intensity and talking about the finitude of life configures an opportunity to see life from other perspectives. Giving voice to individuals facing the mishaps of a terminal illness fosters the path to a comfortable death. For health professionals, it is an opportunity to provide structured and humanized care with an ethical attitude, in defence of human dignity.

Experiences of Patients with Advanced Chronic Disease Transitioning to Palliative Care in Low- and Middle-Income Countries: A Scoping Review

“…Two papers highlight the significant psychological challenges experienced by individuals living with advanced illnesses, including loss of control, dependence, loneliness, and feelings of abandonment. [21][22][23] Unmet psychosocial needs can have a significant impact on the well-being of both patients and their families, as reported in three studies. Unmet psychological needs lead to increased emotional distress as the condition worsens.…”

“…This uncertainty can make it difficult for patients to plan for the future, as they may not know the full extent of their condition, its long-term outcome, or the effectiveness of available treatments. [18,22,23] Given that many chronic diseases are incurable, requiring lifelong management, this review found that they are also unpredictable, leading to overwhelming fear and a loss of control. False hopes of a cure can lead to disappointment and disillusionment if the disease does not improve.…”

“…Knowing that the disease is incurable can cause patients to have a variety of negative emotions, including stress, fear, a sense of powerlessness, or false expectations of a cure. [22] Studies conducted in Nigeria, Uganda, and Zimbabwe have shown that a cancer diagnosis can significantly impact personal self and role identity, leading to feelings of worry, anxiety, and uncertainty. The diagnosis is often seen as an irreversible event that worsens the discomfort and pain symptoms in patients' illness trajectory.…”

“…These feelings, together with powerlessness, losing control, and uncertainty about death, can be harmful. [22] Need of Social and psychological support Reaching a point of needing palliative care can be accompanied by critical psychological impacts on the patients and their caregivers. The study revealed that 22.8% of patients are not actively involved in decision-making about their care, largely due to a lack of patient education and understaffing, which hinders effective communication.…”

When to initiate early palliative care? Challenges faced by healthcare providers

“…To provide effective and efficient patient-centered care at the palliative stage, we must attend to the complexity of care and the areas of specialized interventions ( 29 ), by clearly defining the core competencies of the multidisciplinary health team members, and prioritizing a holistic and interactive approach ( 30 ). Involvement of care teams reduces hospitalization rates for PC patients and enables them to spend more time at home ( 30 ), honoring patients' wish to be cared for at home ( 31 ).…”