The physician uses rapidly sedating medications (midazolam, propofol, pentobarbital) that are titrated until the patient is unconscious. V, who have an advanced, terminal illness and whose suffering is refractory to all other measures. Palliative sedation to unconsciousness is also a legal and ethical option for patients like Dr. Some insurance carriers will “carve out” the palliative transfusions and antimicrobial medications needed for the comfort of patients with persistent cytopenias, but until more universal coverage for these is available, patients and families may be best served by collaborations among their hematology team, the palliative care team, and a Bridge to Hospice or home nursing service. For this care they receive about $135 for each day the patient is enrolled. Hospice programs are required to pay for all the palliative treatments (e.g., medications, transfusions, radiation or chemotherapy, enteral or parenteral nutrition) related to the terminal diagnosis, to provide a skilled team of caregivers (nurses, nursing aides, social workers, chaplains, volunteers, and a medical director), and all durable medical equipment and oxygen. Of over 4000 patients admitted to a Boston hospice program over the past 4 years, < 1% had a hematologic disorder as the terminal diagnosis (J. The current Medicare Hospice regulations, and the similarities in the hospice benefits provided by private insurance companies, make it difficult for patients with cytopenias from hematologic disorders to enroll in hospice programs. Unfortunately, hospice programs will remain a resource not accessed by hematology patients unless the funding paradigm changes.
Patients who hastened their deaths in the last week had usually suffered some new physical problem (such as new-onset rectal bleeding, diarrhea, or vomiting) that led them to feel that they “couldn’t do it anymore.” Patients with about a month to live felt they were not dying “fast enough.” They anticipated only further deterioration and significant future suffering.
Those with 1 to 6 months to live were concerned that their anticipated increase in mental or physical disability would make them unable to stay in control of the time and manner of their death, or render them unable to take the medications. 9 The few patients interviewed who had more than 6 months to live had suffered for years with severe pain or disability, and saw themselves entering an intolerable, relentless downhill course. The specific reasons they chose to die varied with their proximity to death. As might be expected, the most common concerns of Oregon patients who asked for prescriptions were loss of autonomy or of bodily functions, and decreasing ability to participate in the activities that mattered to them.
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