Patterns of Social, Psychological, and Spiritual Decline Toward the End of Life in Lung Cancer and Heart Failure

Abstract

Typical trajectories of physical decline have been described for people with end-stage disease. It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. We sought to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses. The subjects were 48 patients with advanced lung cancer (n=24) and heart failure (n=24) who gave a total of 112 in-depth interviews. Data were analyzed within individual case studies and then cross-sectionally according to the stage of physical illness. Characteristic social, psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the social trajectory mirrored physical decline, while psychological and spiritual well-being decreased together at four key transitions: diagnosis, discharge after treatment, disease progression, and the terminal stage. In advanced heart failure, social and psychological decline both tended to track the physical decline, while spiritual distress exhibited background fluctuations. Holistic end-of-life care needs to encompass all these dimensions. An appreciation of common patterns of social, psychological, and spiritual well-being may assist clinicians as they discuss the likely course of events with patients and carers and try to minimize distress as the disease progresses.

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

“…61 Eight of the included articles were qualitative studies of patients, carers or health professionals. [61][62][63][64][65][66][67]72 One study was a mixed-methods comparative cohort study, 68 one a case study report, 69 one a critical discourse analysis 70 and one a non-empirical discussion piece. 71 Transition to palliative care was the main focus in only two of the included papers; 61,72 the remainder referred to transition only as a minor theme or as a component of the discussion.…”

“…Of the 12 papers included in the review, nine [61][62][63][64][65][66][67][68]72 provided evidence or discussion of patient and carer experiences of transitions. The overwhelming consensus was of fear and uncertainty when making the transition to palliative care.…”

Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients

“…They also experience progressive psychological, social and existential challenges. Their experience was similar to that previously described in patients with advanced lung and brain cancer (Cavers et al., 2012; Kendall & Murray, 2005) in that there was a clear beginning to the story, and contrasted to narratives of patients with chronic obstructive pulmonary disease and heart failure (Kendall et al., 2015; Murray et al., 2007; Pinnock et al., 2011). An understanding of the difference between public and private accounts which patients tell clinicians, and the importance of current social narratives of cancer, was vital for understanding the results of this study.…”

“…Patients can also experience faecal incontinence, due to abnormal bowel functioning, resulting in feeling less control over their bodies (Beech, Arber, & Faithfull, 2011; Desnoo & Faithfull, 2006; Houldin & Lewis, 2006; McCaughan, Prue, Parahoo, McIlfatrick, & McKenna, 2011). Fluctuations in psycho‐social and spiritual wellbeing also occur as patients suffer gradual social decline and seek meaning and purpose in their distress (Murray et al., 2007). Patients may also reflect on life's value as the illness progresses (Houldin & Lewis, 2006; Sjovall, Gunnars, Olsson, & Thome, 2011) and their sense of self is compromised, which can result in social isolation and existential distress (Hubbard, Kidd, & Kearney, 2010; Kidd, Kearney, O'Carroll, & Hubbard, 2008; Little, Jordens, Paul, Montgomery, & Philipson, 1998; Rozmovits & Ziebland, 2004; Taylor, 2001).…”

Reflections on wisdom at the end of life: qualitative study of hospice patients aged 58–97 years

“…In terms of lifespan, hospice care has been redefining our understanding of the affective, cognitive, physical, social, and spiritual underpinnings of well-being as death draws near (Pinder and Hayslip, 1981;Murray et al, 2007;Vachon et al, 2009). Most notably, it has been suggested that the end of life can provide a unique time for possible self-transcendence and self-reflection (Vachon et al, 2009), constructs often associated with the presence of intelligence, spirituality, and wisdom (Jeste et al, 2010).…”