living your best to the end

Substitute Decision-Makers Suffer Post-Traumatic-Stress

Surrogates suffer in their role as patients’ decision-makers “A Systematic review: the effect on surrogates of making treatment decisions for others“– published in the Annals of Internal Medicine – was the topic of discussion on Pallimed: A Hospice & Palliative Medicine Blog.1 Substitute decision-makers, described as “a solution to a problem created solely by advancing medical technology,” often help make treatment decisions for patients who cannot do so themselves. There is an effect on the surrogate that has not been assessed. Surrogates are mostly family members The authors researched 40 studies of 2,854 surrogates and found that in more than 50% of cases, the surrogates were members of the patient’s family. In one study, the surrogates, who were relatives, felt guilt about their treatment decisions. At least one-third of the surrogates felt “a negative emotional burden” such as anxiety or stress from the process Symptoms of posttraumatic stress disorder among family members who had participated in making decisions were also present in several of the reviewed studies. Study authors wrote:, “Our evaluation of more than 2,800 surrogates indicates that this practice places emotional stress and burden on at least one-third of surrogates, which is often substantial and lasts months or, in some cases, years.”2 A group in Munich, Germany, also looked at the role that family members play in making decisions about life-prolonging treatment in seriously ill patients. The researchers followed 70 patients with terminal cancer in whom physicians were considering whether to limit life-prolonging treatment. They recorded the patients‘ wishes about end-of-life care, the roles of their family members, and how both groups felt about limiting treatment. Although the...

Pain as a Cause of Agitated Delirium

“Can’t you do something about her pain?” An 85-year-old woman with multiple medical problems, including dementia, coronary artery disease, renal insufficiency, and peripheral vascular disease, was admitted to our hospital with urosepsis. Her hospital course was complicated by the development of dry gangrene of her left foot, Candida sepsis, Clostridium difficile enterocolitis, and multiple deep sacral and trochanteric pressure ulcers. When housestaff asked her son if he wanted us “to do everything,” he always answered yes. She was able to be weaned from the ventilator and was transferred to a medical unit for continued treatment of hospital-acquired C difficile enterocolitis and wound care of her multiple stage 4 ulcers. She underwent 4 surgical debridements under general anesthesia in the operating room over a several-month period but remained persistently febrile despite continuous treatment with broad spectrum antibiotics. The patient was withdrawn, tense, and turned toward the wall in a fetal position, but she screamed and cried out for her mother, moaned in pain, and tried to hit and strike out at the nurses when they performed her twice-daily dressing changes. She refused all efforts to feed her or offers of sips of fluid and received all nourishment and hydration through her feeding tube. She did not respond to the voice or touch of her son or grandsons when they visited. On day 63 of her hospitalization, a palliative care consultation was requested by the nurse manager on the floor because of nursing staff distress about their perception of having to hurt the patient during dressing changes. With the agreement of the attending physician, who had refused to give medication, on...