Do dying patients have a moral claim to access experimental drugs when all else has failed? This question has been the focus of an active and evolving debate concerning the rights of terminally ill patients, the nature of the drug development process, and the scope of federal regulation, with supporters arguing that seriously ill patients should be able to decide for themselves whether and when to attempt experimental therapies and opponents arguing that the resulting state of affairs would be disastrous for patient safety and for the integrity of the drug development process. This thesis concerns the ethical considerations surrounding the provision of experimental drugs for treatmentoften termed compassionate use or expanded accessand argues that compelling ethical merits on both sides of the debate complicate the formation of satisfactory public policy. Although patient autonomy is often invoked to support liberal access to experimental drugs, the paucity of known information about investigational compounds as well as the unique vulnerability of the terminally ill patient call into question the wisdom of the unfettered exercise of autonomy in this context. Although equitable distribution of experimental drugs is often felt to be a concern, the meaning of equity in this context has not been clearly defined, and in fact several working concepts of equitable access may not be achievable or desirable. Although the financial burden on drug manufacturers is frequently recognized as a barrier to expanded access, the potential for expanded access programs to constitute a marketing strategy should be recognized, and the mixing of profit motives with altruistic ones brought to light. Parsing these and other ethical nuances points to certain ways in which policies governing expanded access can be refined to allow for access while maximizing patient protection and ensuring the generation of scientific knowledge. Physicians, as frequent mediators of requests for experimental drugs, should be knowledgeable of the ethical issues inherent and should help to ensure the judicious use of experimental therapies. Finally, general misconceptions about the benefits of experimental therapy, pervasive in our culture, heighten the contentiousness of this debate. A workable legislative solution should be accompanied by a thoughtful and deliberate effort to educate patients, their advocates, and broader society about the realistic pace of drug development and the limits of modern medicine. This thesis recognizes that individuals who seek expanded access often have valid moral claims to do so, but advocates a cautious attitude toward the dissemination of experimental drugs for treatment and maintains the importance of government and physician participation in adjudicating access.

Thesis (M.A.)--Catholic Theological Union at Chicago, 2003. / Vita. Includes bibliographical references (leaves 51-52).

Att vårda en patient i livets slutskede innebär att bekanta sig med känslomässiga situationer som ofta påverkar sjuksköterskans omvårdnadshandling exempelvis effektiv symtomlindring. Syfte: Syftet med denna studie var att beskriva sjuksköterskans upplevelse av det vårdande mötet med patienten i samband med palliativ vård. Metod: Metoden var en litteraturstudie med kvalitativa ansatser. Sex vetenskapliga artiklar samlade in och användes som analysmaterial av denna studie. Innehållanalysen inspirerad av Graneheim och Ludman (2003) användes för att analysera insamlade data. Resultat: Resultatet visade att sjuksköterskan upplever tillfredställelse och välbefinnande om hon lyckas med att tillgodose patientens behov exempelvis smärta. Effektiv smärtlindring upplevdes som meningsfull och det innebar att hon hade betytt något för patienten och dess närstående. Däremot upplevdes hon stress, frustration, maktlöshet och konflikt när hennes omvårdnadshandling inte mött patientens behov. Samverkan mellan arbetsteamen och stöd från kollegor upplevdes som viktigt i den palliativa vården. Sjuksköterskan höll distans för att kunna hjälpa patienten. Slutsatsen: Sjuksköterskan behöver kunskap om smärtlindring samt kunskap om palliativ vård för att effektivt lindra patientens smärta. För att tillgodose patientens behov i sin helhet behöver hon tillräcklig med tid och frihet att själv planerar sitt arbete. Samarbetet med andra vårdteam och kollegornas stöd måste stärkas och ha ett gemensamt mål: patientens välbefinnande då kan sjuksköterskan uppleva välbefinnande.

No description available.

The recent expansion of focus within medicine to include palliative care has created a new corps of professionals who fulfill a role that might be considered antithetical to their profession. This new medical role calls for individuals who have personality characteristics that will allow them to constantly face death. This study was concerned with examining, in Adlerian life style terms, the personality characteristics of one segment of that corps--the hospice home care nurse. The subjects used in this study represent the population of nurses (N = 6) who provide the care within the framework of the home care program of Hillhaven Hospice of Tucson. A structured interview was held by the researcher at which time the subjects responded to each of the items on the Life Style Interview Guide. Three experts trained in Adlerian psychology and life style interpretation collectively analyzed each life style in order to arrive at a life style summary for each nurse as well as a composite summary. The results of this study showed a high degree of similarity and consistency with regard to attitudes, personality characteristics and life style themes of the hospice home care nurses studied.

The purpose of this study was to explore spiritual and psychological issues as experienced by persons who know they have a terminal illness. An existentialphenomenological method was chosen to understand and articulate the structure and meaning underlying the experience of living with the knowledge that one has a terminal illness. The study had its genesis at the bedside(s) of people who were dying, yet living or living, yet dying. The experience of knowing one has a terminal illness serves to bring life and consciousness to those who may have otherwise continued to live unconsciously, to exist in a potentially weary and dormant state, oblivious to the fact that life was passing them by. The evidence of experience of knowing what it means to have a terminal illness exists in the words and expressions of the twenty-one people who graciously participated in this study as co-researchers. They have given testimony of their own experience to those of us who seek to understand that experience, to understand what it means to have a terminal illness, to confront one's end to life as it is known, to embrace life or to prepare to die. For some it was a single in-depth interview, for others there were numerous indepth interviews over the course of two to eleven months. Eight of the twenty-one coresearcher narratives were presented in this study. Each interview was recorded by audio and video tape, the former being used for transcription. Subsequently, transcriptions were reviewed for accuracy. As a measure of trustworthiness, themes were identified by the principal investigator and presented in the context of the narrative to the coresearchers who confirmed the data and validated the themes. Implications based on the themes identified in this study are presented under theory development, professional practice and future research. One of the strongest implications pertains to clinical practice in that the results could serve as the framework for a palliative care program which models palliative care as defined by the World Health Organization. The co-researchers were eager to tell their stories and to speak their truth with the hope that the care of persons with terminal illness would some day include care of people as whole persons—physical, psychological and spiritual.

Dissertation (Ph.D.)--Auburn University, 2006. / Abstract. Includes bibliographic references.

Diss. (sammanfattning) Uppsala : Univ., 2001. / Härtill 6 uppsatser.

Thesis (M.Nurs)--University of Western Sydney, Nepean, 1995. / Includes bibliography.

Thesis (Ph.D.) -- University of Western Sydney, 2005. / Includes bibliography.