The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 6: Pulmonary SymptomsOften, a longer-acting benzodiazepine such as diazepam (5 to 10 mg rectally or parenterallyevery 4 to 12 hours) is effective in maintaining sedation. Morphine can be added to help suppressthe sensation of dyspnea, if needed.26 picasBarbiturates can also be used to maintain sedation. Pentobarbital (100 to 200 mg IM, intravenouslyor rectally every 4 to 6 hours) and phenobarbital (60 to 120 mg rectally or IM every 6 to 12 hours)are both very effective in maintaining sedation and may help to reduce benzodiazepine doses.Medication doses may need to be adjusted frequently and these patients often require high levelsto maintain comfort. However, with careful attention to the details of dosing, continuous sedationand a peaceful death are possible.Options for Patient Control over the End-of-Life EventsBefore recommending life-prolonging interventions for a terminally ill patient, it is essentialto have a clear idea of how a suggested treatment will enhance the person’s quality of life or helphim or her to meet specific goals. Just because we can intervene to prolong life, doesn’t necessarilymean that we always should. More often than we may recognize, “letting nature take itscourse” results in the least suffering and the easiest process of dying possible under the circumstances.Patients need to know this.It is obviously important for patients to understand their treatment options all through thecourse of their disease. As they approach the end of life, this is no less important. Patients needto know that they have more control over the final events of their lives than they sometimesrealize. It is the role of patients, armed with accurate information about the status of theirdisease and prognosis, to decide when it is time to stop “fighting” the disease. This importanttransition allows patients to begin focusing their remaining energy toward completing the businessof living and giving attention to the work of preparing to die. During this process, they canbe offered the further options of choosing or refusing antibiotics or other life-prolonging medications,fluids, artificial nutrition, or blood transfusions. Patients also need to understand howexercising these options can affect the timing and manner of death. Sharing this informationwith people can be difficult and the timing is critical. However, for most patients, this informationis ultimately reassuring and comforting.Promises to KeepAlthough respiratory symptoms have the potential to be frightening and distressing, applyingthe principles of palliative medicine allows most people to die comfortably and peacefully. It isoften very reassuring to patients and those who love them to know in advance that suffering canbe prevented and symptoms controlled with the use of appropriate medications. An old Frenchadage suggested that the role of medicine was “to cure sometimes, to relieve often, to comfortalways.” With the knowledge and drugs available now, we can almost always relieve, as well ascomfort. We can make promises to patients that weren’t possible a few decades ago, promises ofcomfort and relief from suffering. Patients need to know this—in advance. And then, when thetime comes, they need to experience the reality of that reassurance.142U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau