living your best to the end

When does ‘no’ mean ‘no’ in health decisions

Medical decisions: why does saying ‘no’ mean you need a psychiatric consult? That’s what seems to happen if someone – anyone – decides they don’t want any more medical interventions. Take this story of a 70-year old woman – still vigorous and enjoying life: “After her oncologist carefully explained the benefits, risks, and alternatives to the recommended course, she declined to proceed further.  Instead of launching into an arduous medical regimen, she has chosen to focus the remainder of her time and attention elsewhere, on matters outside of medicine.” This did not sit well in the medical field: “On hearing such a story, some of my medical colleagues question the patient’s soundness of mind.  Could she be depressed?  Might she be in the early stages of dementia?  Could she have simply failed to grasp the full gravity of her situation?  To them, the failure to take advantage of the wonders of modern medicine smacks of irrationality.  The solution?  Her physicians need to sit her down again and explain the situation more clearly.  Should this fail to elicit her consent, perhaps a psychiatry consult would be in order.” Why on earth can’t the uber zealous healthcare professionals just take it at face value? As she sees it, she is not refusing treatment.  She is affirming life. “….she envisions her last months as the final, fitting chapter of a life well lived – her chance to live up to all she has been pursuing since her youth.  As she sees it, she is not refusing treatment.  She is affirming life.  She knows that its end is every bit as natural as...

Things I’ve learned from dying

Living, knowing you are going to die Drawn, as I am, to learning ever more about how we die, and how ‘one’ dies, this David Dow title, “Things I’ve learned from Dying ” had me at ‘hello’ Dow – who is very much alive – is a death row lawyer in Texas . He writes beautifully about, and pours insight into the humanity of those on the row. But that’s not why I found his book so important and compelling: it’s the parallel story that I fastened on: Dow’s story of Peter – his father in law –  who died within a year of diagnosis. Throughout the sickness, its treatment and decisions about, Peter shares with Dow some light, along with the darkness of regrets, disappointments, conflicts and depression, and self-awareness. These emotions and reactions along the journey, tell an eternal story: Not wanting to lose a loved one, perhaps at the cost of the loved one’s quality of life As Peter says: “You all want me to stay alive, but that is because you want me to be in your lives. Of course that flatters me, and makes me happy and sad, but that desire does not give you a ballot, and even if it did, it is wrong to cast a vote that treats me as a means to your ends. I want to die with dignity, and you are all determined to thwart me.“ Peter is the loved one, torn between his own needs and those of his family: “For [daughter] Katya, either I am here or I am not. For me the line is elusive....

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. 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...

Dementia: Feeding tubes may add to risk of bed sores

 PEG or Percutaneous endoscopic gastric feeding tubes, long assumed to help bed-bound dementia patients stave off or overcome bed sores/pressure ulcers, may instead make the wounds more likely to develop or not improve, according to a study. “We see a substantial risk of people developing a stage II and higher pressure ulcer. We believe these risks should be discussed with family members before a decision is made to insert a feeding tube in a hospitalized nursing home resident with advanced cognitive impairment.” Dr Joan Teno, MD, MS, the study’s lead author, is a gerontologist and professor of health services, policy and practice in the Public Health Program at Brown University in Providence, R.I. In a news release she said:, “This study provides new information about the risks of feeding tube insertion in people with advanced cognitive impairment.” Researchers found that among patients who did not start with an ulcer (bed sore), 35.6% of those with a feeding tube ended up with at least a stage II ulcer, compared with 19.8% of patients without a feeding tube. The researchers found that the chance of getting an ulcer was 2.27 times higher for people with feeding tubes than for those without. The risk of developing a more serious stage IV ulcer was 3.21 times higher for those with feeding tubes. Among patients who already had an ulcer, the researchers found that 27.1% of patients with a feeding tube experienced short-term improvement, while 34.6% of those without a feeding tube experienced healing in a comparable time frame. In a previous survey, three-quarters of physicians thought the nutrition delivered by feeding tubes would...

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...