The Artificial Heart Prototypes, Policies, and Patients (1991) / Chapter Skim
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5. Quality of Life and Mechanical Circulatory Support Systems
5. Quality of Life and Mechanical Circulatory Support Systems
Pages 85-106
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From page 85... ...
A Texas newspaper columnist (Greene, 1990) writing in first person about his experience of heart transplantation shares these thoughts on quality of life: One of the meanest things we can say of a person is that he or she is heartless.
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From page 86... ...
The history of earlier efforts to treat end-stage heart disease patients with mechanical circulatory support devices reflects many emotional and ethical concerns about the clinical and technological environments (Galletti, 1984; Shaw, 1984; Swazey et al., 1989~. That history has heightened concern for the "person" with an illness, such as end-stage heart disease, and has confirmed the importance of patients' preferences for balancing quantity of life with quality of life.
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From page 87... ...
As occurred in the mid-1980s with the use of the Jarvik-7 total artificial heart (TAM) for Barney Clark and William Schroeder, this technology attracts much media attention, including major newspapers, tabloids, television, and radio.
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As discussed later in this chapter, these health states are operational definitions of the health and quality of life of patients under different treatment options, including conventional medical treatment, MCSS, and heart transplantation.
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The variables chosen to evaluate health depend primarily on what aspects of life are considered relevant to health; in turn, the variables used to evaluate the effects of health care interventions depend on the goals of the intervention. Outcome measures might include the assessment of health-related quality of life in key facets of life experience.
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From page 90... ...
Once identified, the domains guide the development of descriptive functional attributes and perceptions of patients in the various health states undergoing analysis. The domains selected for use in this study's CEA of three patient-treatment groups are listed in Table 5.1.
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These trade-offs occur among two or more health states defined with two or more domains. For example, social functioning might improve and self-care might deteriorate for a patient between two points in time.
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Appendix E provides more details on the CEA and how utility measures fit into the broader methodology. Other Domains Relevant to These Quality-of-Life Issues The study committee identified several health-related quality-of-life domains of potential significance to patients considering or having received MCSS treatment, in addition to those used in the health states for the CEA in Chapter 6.
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The costs that are borne by society or third-party payers to provide MCSS treatment may also raise questions for others as to whether the patient is "worth" the expense; such questions may create doubts in the patient of his or her worthiness. Other, more philosophical aspects of health status, including some perhaps not yet identified, may be significant for patients treated with a TAH because of the unusualness of a machine heart.
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From page 94... ...
The former implies an actively initiating role of the self (George and Clipp, 1991~; the latter implies an act of judgment of an individual on his or her interaction with external or objective life resources or conditions such as illness, socioeconomic status, and relationships to others (Patrick and Erickson, 1988~. Additional concepts in this area of potential relevance to MCSS patients are the finiteness of life, will to live, imminence of death, and readiness for death.
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Heart Transplantation Comparison of the quality-of-life outcomes of organ transplantation with those of other treatments provides some insight to the health status of different patient groups. However, the dearth of research involving control
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was among the domains studied; both groups scored poorly in this domain. dysfunction in social and leisure activities than did transplant patients, and heart failure patients viewed their overall functional status to be lower than did heart transplant recipients.
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Perspectives from Prior Studies of the Artificial Heart The National Heart and Lung Institute Artificial Heart Assessment Panel (NHLI, 1973) concluded that many patients who will eventually have TAHs will experience anxiety-related psychological burdens and perhaps psychotic reactions.
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27) IMPLICATIONS OF QUALITY-OF-LIFE CONSIDERATIONS IN CLINICAL TRIALS AND STUDIES OF MECHANICAL CIRCULATORY SUPPORT PATIENTS Concepts and Methods Assessing the quality of life in clinical trials and follow-up studies of patients receiving MCSSs is fraught with methodological, funding, and policy issues.
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From page 99... ...
This figure reflects the complexity of the subject and, at the same time, points out the importance of a theoretical base for future research studies. Four perspectives are relevant to the selection of instruments for clinical trials and evaluative studies, such as quality-of-life assessments for endstage heart disease patients receiving MCSSs or conventional medical or surgical treatment: ( 1 )
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small; (2) problems with establishing control groups, in particular when study designs are attempting to assess net gains or losses using several outcome measures such as quality of life; and (3)
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From page 101... ...
To the extent that policymakers judge it to be in the public interest to use public resources to develop the ventricular assist device and TAH, their commitment should include adequate support for comprehensive assessments of health-related quality of life in patients receiving MCSSs during clinical trials and even thereafter. If they do not follow through on such a commitment, major policy decisions addressing access to and equality of health care and patient-physician decision making on the ancronriatene.cs of __ _ r .
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From page 102... ...
This review of the concepts and theoretical base of health-related quality of life in the context of end-stage heart disease patients and MCSS interventions supports the following conclusions: · Quality of life is an important criterion of successful treatment and should be assessed in clinical trials with heart disease technologies. · A core set of domains for quality-of-life assessment, similar to those used in the utility measures in this report, should be included in all MCSS clinical trials; clinical trials should receive adequate funding to assess health-related quality of life in the core domains.
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1984. The National Heart Transplantation Study.
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A Report of the Artificial Heart Assessment Panel of the National Heart and Lung Institute. Rockville, Md.: National Heart and Lung Institute.
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From page 105... ...
1989. The artificial heart: A case study of social and ethical issues posed by advanced medical technology.
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From page 106... ...
1989. Heart transplantation may not improve quality of life for patients with stable heart failure.
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