What Matters to Seriously Ill Older Persons Making End-of-Life Treatment Decisions?: A Qualitative Study
ABSTRACT Several methods exist to elicit end-of-life treatment preferences. However, little work has been done to elicit from patients themselves the aspects of treatment decision-making most important to them when making end-of-life treatment decisions.
Participants consisted of 23 patients, 60 years of age and older with a primary diagnosis of congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or cancer identified by their physicians as having a limited life expectancy. They took part in in-depth semistructured interviews and focus groups in which they were asked to discuss how they had made previous decisions about the treatment of their illness and/or would think about making future decisions. Transcripts were analyzed qualitatively using the constant comparative method.
There were three major influences on treatment preferences: treatment burden, treatment outcome, and the likelihood of the outcome. Treatment burden was bearable if the outcome of treatment was desirable, but participants were less willing to endure the burden for more marginal outcomes. Certain outcomes were so unacceptable that they determined preference regardless of burden. However, some participants revealed that their willingness to tolerate these adverse outcomes may increase as their illness progresses. Although participants generally believed that physicians know with certainty the outcomes of treatment, most understood the concept of uncertainty, and the likelihood of a given outcome influenced their preferences.
A patient-centered approach to advance care planning needs to incorporate a consideration of both treatment burdens and treatment outcomes, including the likelihood of these outcomes. Patients' valuations of these outcomes may change over time.
- SourceAvailable from: Janice Gullick
Chronic Obstructive Pulmonary Disease - Current Concepts and Practice, 03/2012; , ISBN: 978-953-51-0163-5
- "Patients may have their own interpretation of the time when treatment is no-longer worth the burden that continued life presents. Scenarios that include prolongation of inevitable death, dependence on machinery, functional and cognitive impairment, unmanageable symptoms and a burden on loved ones have been noted as unacceptable by patients (Fried & Bradley, 2003). "
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- "In the United States of America (USA), advance care planning protocols implemented in the community with patients with life-limiting conditions, and their families, have been associated with improved palliative care outcomes (Schwartz et al. 2003). In particular, they had the potential to help people plan for their end of life care and assist in preventing 'unplanned' and 'crisis' admissions to hospital during the last year of life (Farber et al. 2003, Fried & Bradley 2003). It might be argued that people would not want to talk about these issues, and that there is a danger that clinical actions that are linked to an advance care plan may be akin to euthanasia. "
ABSTRACT: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.Journal of Advanced Nursing 09/2005; 51(4):325-34. DOI:10.1111/j.1365-2648.2005.03503.x · 1.74 Impact Factor
- "There is some evidence that people value cognitive ability more than physical functioning (Coppola et al 1999; Fried et al 2002; Rosenfeld et al 2000) with advanced dementia the most feared condition in one study, becoming even more unacceptable when combined with other disabilities (Schiff et al 2000). Some studies (Fried & Bradley 2003; Rosenfeld et al 2000; Fried et al 2002: Patrick et al 1997) look at the effect of treatment outcomes on people's preferences, with varying conclusions. In a study by Fried et al (2002) almost all participants preferred a low-burden therapy that would restore their current health status, if the alternative without treatment was death, but if the low-burden therapy resulted in an outcome of severe cognitive impairment almost 90% would not choose to receive the therapy. "