living your best to the end

BestEndings Chat: end-of-life discussion video’d

Inaugural BestEndings Chat topic: Why is it so hard to talk about dying.   Insights, Revelations. Confessions and Spirited Debate amongst 6 friends from diverse backgrounds. Together, we represented Hindu, Athiest, Christian, North American Catholic, Mexican Catholic and Muslim. Left to right: Mike, Sudhir, Ruth, Kathy, Colleen, Gina, Majid Mike Houlahan, Healthcare Executive; Sudhir and Ruth Handa, Businessman, Colleen Young, plain language writer and founder of Canada’s national tweet chat for healthcare and social media: #hcsmca, Gina Camacho Ibarra and Majid web developers, BestEndings. The video will be uploaded soon, but in advance – a taste of what’s to come (funny bits saved for the video) Mike: I’m involved in healthcare, I’m engaged with BestEndings and still – when my father had a health scare, I was too scared to talk to him. Sudhir: I guess because of my upbringing, I am not afraid of dying – I just want to be fully prepared. Ruth: I don’t think you can say any one religion offers more comfort than another. Gina: In Mexico, we celebrate death: we visit our relatives and have Day of the Dead. Majid: I love talking to you every day: it’s a great opportunity to talk about living – that’s really what you’re talking about. Colleen: So often, when someone is ‘going’ you want to do something. My mother’s given me something to do in the event she can’t speak: she’s asked me to read to her. I feel very comforted by...

Communicating Prognosis at the End of Life

How to tell patients they’re likely to die Health care professionals often have difficulty facilitating hope and coping strategies when managing end-of-life issues.  Advising a limited life expectancy has an obvious impact on the patients, caregivers and their networks ability to remain optimistic. To overcome this health care professionals can offer to answer questions, discuss promising new treatments, treat the patient as a “whole person”, discuss the limitations of end-of-life estimates, present information about palliative care and advice on other alternative treatments. Often this information will need to be staggered to avoid overwhelming the patient. If a patient’s health is deteriorating a time will come in which discussing death and dying becomes important. In the terminal phase the patient and their caregivers may hold unnecessary or misplaced misconceptions about the process of dying. This discussion can do much to alleviate anxiety. Patients’ information needs differ with context, prognostic stage and distribution rates. Though most patients will prefer being kept highly informed and appraised of treatment options this need will differ in relation to the context of their own health and their stage in the prognostic cycle. Further, whilst some patients may prefer an “all-at-once” approach to information, others will prefer it to be dispersed across a series of touch points in a more “piecemeal” approach. Discussing prognosis and end-of-life issues has been identified as an important component of care by patients with progressive life-limiting illnesses, and their families.1,2 Being adequately informed is essential for such patients and their caregivers to participate in decisions about their treatment and care, to set goals and priorities, and to prepare for death. Clinicians...

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...

Dialysis

May be used for temporary or permanent loss of kidney function Dialysis is a life-sustaining treatment, but it is important to recognize that dialysis also has limitations. It may not be of benefit to prolong life with dialysis if quality of life suffers dramatically. More info:...