Ultimate journey of the terminally ill: Ways and pathways of hope.

OBJECTIVE: To better understand the role of hope among terminally ill cancer patients. DESIGN: Qualitative analysis. SETTING: A tertiary specialized cancer centre in Canada. PARTICIPANTS: Cancer patients in palliative care with an estimated remaining life expectancy of 12 months or less (N = 12) and their loved ones (N = 12) and treating physicians (N = 12). METHODS: Each patient underwent up to 3 interviews and identified a loved one who participated in 1 interview. Treating physicians were also interviewed. All interviews were fully transcribed and analyzed by at least 2 investigators. Interviews were collected until saturation occurred. MAIN FINDINGS: Seven attributes describe the experiences of palliative cancer patients and their caregivers: hope as an irrational phenomenon that is a deeply rooted, affect-based response to adversity; initial hope for miraculous healing; hope as a phenomenon that changes over time, evolving in different ways depending on circumstances; hope for prolonged life when there is no further hope for cure; hope for a good quality of life when the possibility of prolonging life becomes limited; a lack of hope for some when treatments are no longer effective in curbing illness progression; and for others hope as enjoying the present moment and preparing for the end of life. CONCLUSION: Approaches aimed at sustaining hope need to reflect that patients' reactions might fluctuate between despair and a form of acceptance that leads to a certain serenity. Clinicians need to maintain some degree of hope while remaining as realistic as possible. The findings also raise questions about how hope influences patients' perceptions and acceptance of their treatments.

Primum non nocere: could the health care system contribute to suffering? In-depth study from the perspective of terminally ill cancer patients.

OBJECTIVE: To explore terminally ill patients' perceptions of their own suffering in order to describe, from these patients' perspective, some elements of health care providers' response to suffering. DESIGN: Qualitative study using content analysis methods suited to a grounded theory approach. SETTING: Teaching and nonteaching hospital oncology clinics, palliative care services (both ambulatory and in-unit), and family practices. PARTICIPANTS: Twenty-six patients diagnosed with terminal cancer. METHODS: Interviews were audiotaped and transcribed verbatim. Data from each interview were coded and categorized to identify and define themes. Themes were discussed and refined until those rating them agreed on them. Data were collected until saturation of emerging issues was reached. MAIN FINDINGS: In our health care system, patients are caught in a pervasive pattern of suffering avoidance, which in turn contributes to increased suffering. Health care services are perceived as a battlefield where physicians and patients are engaged in a losing struggle to ward off illness and death. Both physicians and patients engage in avoiding skepticism and muffling distress. The unavoidable avowal of powerlessness in the face of terminal disease is perceived as capitulation and therapeutic abandonment. Budgetary restraints and understaffing, along with a pervasive culture that implicitly denies death, produce an environment conducive to the avoidance of suffering. To counter this, health care practices that foster increased overlap and continuity between the spheres of oncology, palliative care, and family medicine seem worth developing. CONCLUSION: The suffering of gravely ill patients might be hard to alleviate in the context of modern health care organizations. In some cases, health care delivery directly contributes to increased suffering. Providing support while also helping patients and their families to face upcoming harsh realities is a delicate balancing act that needs to be further explored.

The nature of suffering and its relief in the terminally ill: a qualitative study.

The essential mandate of medicine is the relief of suffering. However, the quest for an integrated model towards a conceptualization of suffering is still ongoing and empirical studies are few. Qualitative inquiry using 31 in-depth interviews and content analysis was carried out between 1999 and 2001 in 26 patients diagnosed with terminal cancer. The suffering experience was described through a multiplicity of heterogenous elements from the physical, psychological, and social spheres. Systematic synthesis of interview material yielded three apparently irreducible core dimensions. Respondents defined their suffering in terms of 1) being subjected to violence, 2) being deprived and/or overwhelmed, and 3) living in apprehension. Cassell wrote, in 1991, that to know the suffering of others demands an exhaustive understanding of what makes them the individuals they are (1). Our model can be of use in structuring and eliciting this necessary information. Understanding how a particular patient feels harmed, deprived or overburdened, and overtaken by fear, provides a lever for action tailored to the specifics of that person's experience.

Impact of lamivudine-resistance mutations on entecavir treatment outcome in hepatitis B.

BACKGROUND AND OBJECTIVE: Entecavir (ETV) is a potent inhibitor of viral replication in nucleos(t)ide analog (NA)-naive chronic hepatitis B patients with a very low rate of resistance (≤1.2%) over 5 years. The aim of this study was to assess the efficacy of ETV treatment in routine clinical practice and to investigate whether persistence of residual viral replication was the result of the emergence and selection of drug-resistant mutants. PATIENTS AND METHODS: Chronic hepatitis B patients treated with ETV were consecutively recruited from the Department of Hepatology, Hospices Civils de Lyon, France, and were monitored regularly within their routine clinical follow-up. Virological, biochemical, clinical, and tolerance findings were assessed prospectively. RESULTS: A total of 79 patients were studied, of whom 58% received ETV as a first-line therapy. During ETV therapy (median follow-up 42 months), hepatitis B virus (HBV) DNA became undetectable in 95% of patients. Time to HBV DNA undetectability was significantly shorter in patients with an HBV DNA level less than 4 log10 IU/ml at baseline and in HBeAg-negative patients. Moreover, time to undetectability was significantly shorter in patients with no or only one lamivudine-resistance (LAMr) mutation than in patients with two or more LAMr mutations (P=0.050). No patient had renal-function impairment during ETV therapy. CONCLUSION: In routine clinical practice, ETV is effective in both NA-naive and NA-experienced patients, except in patients with HBV strains harboring at least two LAMr mutations. The analysis of viral genome sequence at the time of treatment adaptation could prove useful to personalize antiviral therapy in patients failing a previous line of treatment.