‘My body's falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers

Abstract

Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.

The threatened self: Considerations of time, place, and uncertainty in advanced illness

“…In contrast to participants described by Townsend, Wyke, and Hunt () and Sells et al . (), these participants largely saw themselves as old rather than ill (Mason et al ., ). As has been shown elsewhere, this perception provided some protection from the disruption to the individual's sense of continuity and personal coherence that the onset of one major illness may bring about (Faircloth, Boylstein, Rittman, Young, & Gubrium, ; Pound, Gompertz, & Ibrahim, ).…”

Palliative care from diagnosis to death

“…16 People may die suddenly during an exacerbation or when still functioning relatively well, so death is often perceived as unexpected, although it has actually been a predictable risk for some years. 18 During the increasingly frequent exacerbations of conditions such as heart failure, liver failure, or chronic obstructive pulmonary disease, patients and their carers are anxious, need information, and often have social problems. Support for these needs might be more effective and likely to reduce hospital admissions than interventions focusing on disease management or physical wellbeing, especially as multimorbidity is the norm in these conditions.…”

“…The content and the context of such conversations should be relevant to the person's current state and involve those close to them (box 1). [14][15][16][17][18][19][20][21][22][23][24][25][26][27][28] Many clinicians find it challenging to raise palliative care with patients because it is associated with imminent death. In Canada and the UK some palliative medicine physicians use the term "supportive care" to promote access.…”

Events Leading to Hospital-Related Disenrollment of Home Hospice Patients: A Study of Primary Caregivers' Perspectives

“…[21][22][23][24] However, enrolling a patient into hospice can significantly alter the dynamics of the treating physician and patient, given that a majority of the care is provided at home and delivered by a dedicated hospice team. One can imagine that patients and caregivers who have established trusting relationships with their physicians and affiliated hospitals would want to continue to receive care from them under certain circumstances, even after enrollment into hospice.…”