Introduction: Forty years ago the life saving and life prolonging therapy of dialysis was rationed. It was extremely unlikely that people aged over 50 years would be offered treatment. Today, those aged over 65 years are becoming the fastest growing group of patients on dialysis. Changing population demographics and referral patterns, the opening up of eligibility for dialysis to high risk individuals, refinement and developments in dialysis technology and its ‘success’ in keeping more patients alive for longer periods, along with rising public expectation, are just some of the reasons behind this change in the age profile of those being currently treated for kidney failure. Older people are likely to have multiple co-morbidities and decreased functional status that may complicate their decision-making about dialysis and limit their treatment options. / Enhancing choice and involvement in treatment decision-making to the patient’s satisfaction is a central theme of health care ethics. Current national and international ethical guidelines about the initiation of dialysis recommend shared or joint decision-making and discuss patient ‘benefit’ and patient ‘need’. This project sought to determine how these recommendations, and other ethical issues related to informed consent, possible withdrawal of treatment and quality of life, were embodied in the personal experiences of a group of older people facing dialysis decisions. / Aim: The general aim of this research was to follow the dialysis decision-making process over time amongst a group of people aged 65 years and older. More specifically, this research sought to explore with the participants the following issues: what factors impacted on their dialysis decision-making; how they understood both what was happening to them and the goals of treatment; their preferences for information seeking; how they perceived any future decision-making; how or whether the commencement and experience of dialysis influenced their decision-making; and once treatment had been initiated, how they felt about their initial decisions. / Method: A predominantly longitudinal qualitative study was undertaken. Meetings were conducted prior to the potential initiation of dialysis with 21 participants. These meetings involved a semi-structured interview and the administration of three questionnaires focusing on preferences for decision-making, information seeking and quality of life. Data was also collected from the participants’ health records. For those participants who commenced dialysis a further two meetings were undertaken one month and then six months after treatment was instigated. The qualitative data was analysed thematically using concepts that had either been pre-determined and explored within the interviews or, had emerged from the participants’ stories. / Findings: Findings from this study include: participants not feeling that they had a choice about dialysis; a mismatch between theoretical expectations of informed consent and shared decision-making and the ‘actor centred experiential’ model of decision-making adopted by participants; a need to re-evaluate the balance and relationships between physiological measures of effectiveness emphasised by health professionals, and psychosocial and functional markers valued by participants; and treatment goals not being individually negotiated. / Conclusion: An interest in remaining alive was the driving force behind why participants chose to have dialysis. Other factors impacting on decisions about dialysis were multi-faceted and were based on priorities other than what health professionals consider important. Shared decision-making, as described in the literature, is not unproblematic. However, health professionals need to accept the underlying premises on which shared decision-making is based so that they can find out what expectations patients have of treatment, beyond that of saving life. Such expectations need to be discussed with patients and the various treatment options need to be negotiated in an attempt to achieve patients’ goals. Patients should be encouraged however to be involved in decision-making to the extent to which they desire.
| Identifer | oai:union.ndltd.org:ADTP/245399 |
| Creators | Fetherstonhaugh, Deirdre Marie Anne |
| Source Sets | Australiasian Digital Theses Program |
| Language | English |
| Detected Language | English |
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