End of life
Gary Chan Kok Yew in Health Law and Medical Ethics in Singapore, 2020
These decisions are not only vexing but also profoundly personal. In Singapore, a person who is 21 years old26 is entitled to make a medical directive under the Advance Medical Directive (AMD) Act expressing his wish not to be subjected to the “extraordinary life-sustaining treatment in the event of his suffering from a terminal illness”.27 The words “terminal illness” refer to an incurable condition caused by injury or disease from which there is no reasonable prospect of a temporary or permanent recovery where – death would, within reasonable medical judgement, be imminent regardless of the application of extraordinary life-sustaining treatment; andthe application of extraordinary life-sustaining treatment would only serve to postpone the moment of death of the patient.
Clinical Intervention
R. Dennis Shelby in People with HIV and Those who help them, 2013
The dimensions of loss caused by AIDS are staggering. Losses range from the concrete-job, income, social role, physical health, and attractiveness-to the abstract-basic security, predictability, self-determination, being in control, and other means for the expression of healthy grandiosity, ambition, and ideals. The diagnosis of a terminal illness, especially for someone in young adulthood, is a direct blow to normal grandiosity, to the common, if illusory, sense of invulnerability and immortality. . . . The very lovers and friends of a FWA need to serve sustaining selfobject functions arc often themselves dead or dying. Thus while mourning his personal losses, a FWA may feel anticipatory grief for his ill and dying loved ones, while simultaneously acutely grieving the recent deaths of others. Tragically at a time of heightened selfobject need, the PWA often must mourn an ever-shrinking selfobject milieu, (pp. 160-161)
Spiritual assessment
Stephen P Kliewer, John Saultz in Healthcare and Spirituality, 2017
Some clinicians who regularly integrate medicine and spirituality develop a preference for specific scales and use them regularly in their work with patients. In some cases the scale is used universally. In other cases the scale is used for indicated or selected patient populations. When used universally, the survey is given to all or most patients during the process of obtaining a medical history. In most cases, however, such an instrument is used with either selective or indicated groups. A selective group would be comprised of those patients who are at risk for spiritual distress. An example of a patient who would fall into this category would be one whose illness had potential moral overtones, such as a sexually transmitted disease or HIV/AIDS. Another example might be a patient with a chronic or terminal illness. An indicated group might be those who have shown signs that they are struggling in the spiritual dimension. A patient from this group would be a person who offers a clear clue during a clinical session that they are struggling with guilt or hopelessness.
Bioethics and the Moral Authority of Experience
Published in The American Journal of Bioethics, 2023
Ryan H. Nelson, Bryanna Moore, Holly Fernandez Lynch, Miranda R. Waggoner, Jennifer Blumenthal-Barby
Returning to the example of access to unproven medical products, we can see that the concept of experience as liability is relevant in a few ways. First, experiencing a terminal illness can lead to a highly individualistic perspective with an understandable focus on doing whatever it takes for a chance at survival, even if it could have damaging consequences for others (or even, potentially, for oneself). This is not to suggest that patients are selfishly seeking only to benefit themselves—in fact, many are part of patient advocacy movements pushing for broader pharmaceutical access for their entire community. However, as noted above, sometimes these efforts ignore that while individual patients may feel they have nothing to lose and no time to waste, patients as a population benefit from approval standards that compel companies to generate strong evidence that their products work (Lynch and Bateman-House 2020).
What is important to patients in palliative care? A scoping review of the patient’s perspective
Published in Scandinavian Journal of Occupational Therapy, 2019
The articles included are qualitative studies based on open-ended interviews. Individual interviews were conducted in all but one article, which used focus group interviews [19]. Most interviews were conducted face to face in the participant’s home or in a care setting. They had the purpose of letting the person/patient speak freely based upon an given topic or a few open questions. The number of participants varied between 3 and 47 and they were 27 to 89 years old. Most of the articles described participants and environments in Western societies (Canada, the Netherlands, Scandinavia and the US), while two were from Hong Kong and Africa. In the majority of the articles, the participants were diagnosed with cancer but in two, the general terms ‘incurable illness’ or ‘terminal illness’ were used. In two studies, participants with HIV, AIDS, cerebrovascular disease and different rheumatoid conditions were also included [20–22].
Home Parenteral Nutrition in Patients with Advanced Cancer: A Systematic Review and Meta-Analysis
Published in Nutrition and Cancer, 2021
Francis J. O’Hanlon, Konstantinos C. Fragkos, Lucia Fini, Pinal S. Patel, Shameer J. Mehta, Farooq Rahman, Simona Di Caro
Definitions of advanced cancer were highly variable in the studies identified. A number of studies classified advanced or “terminal” disease as “incurable,” “irreversible,” “not responsive to further oncological treatment” or not having undergone treatment recently (16, 40, 43, 44, 47, 51, 53, 55), though numerous studies included patients still on single or combination oncological treatments (16, 52, 54–57). Others included 2–3 mo life expectancy in their definition (42), or encompassed disease stage ≥ III/IV and/or the presence of metastatic disease (39, 45, 47, 49, 54–57). Often, the terms “advanced” and “incurable” cancer were used synonymously to encompass the same group of patients. Wang et al. (46) noted that although all terminal cancer patients are oncologically “incurable,” not all incurable cancers are “biologically terminal.” Thus, the heterogeneous definitions of advanced cancer, may also explain the large variability of survival data obtained (median 1.5–10.4 mo) and to some extent may under-estimate the true proportion of “advanced cancer” patients eligible for HPN.
Related Knowledge Centers
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