The study, published online, by Nancy L. Keating, MD, MPH, of Brigham and Women's Hospital in Boston, and colleagues, surveyed 4,188 physicians about how they would talk to a hypothetical cancer patient with four to six months to live. A majority of respondents (65%) said they would discuss prognosis, but only a minority said they would discuss do-not-resuscitate status (44%), hospice (26%) or preferred site of death (21%) at that time. Rather, they would wait until symptoms were present or until there were no more treatments to offer. An abstract and the full text of the study are available here.
Current guidelines, from the National Comprehensive Cancer Network, a not-for-profit alliance of 21 of the world's leading cancer centers, say that such conversations should be initiated whenever a patient has been given less than a year to live, if not at diagnosis. The survey suggests that these guidelines are not being observed in practice.
The survey did not ask physicians to explain their answers, but the researchers offered several possibilities.
"Physicians may disagree with the guidelines (which are based primarily on expert consensus due to limited data), may be unaware of the guidelines, or may agree with the guidelines but still delay discussions that may be difficult," they suggested. Keating and colleagues noted that physicians themselves may be uncomfortable and unwilling to upset patients by discussing end-of-life issues months before the patients are expected to die.
Doctors may also have reservations about their estimates of patients' remaining life span, the researchers wrote, making them reluctant to suggest immediately that patients think about hospice care or where they would like to spend their final days. Finally, writes Keating, "[t]here's at least some evidence to suggest that patients don't want to hear about these things."
But such reluctance can have adverse consequences for patients and their families, Keating and colleagues argued. "Waiting until all possible treatments are exhausted may delay discussions until it is too late for patients' preferences and values to be addressed," they wrote.
Counselling regarding end-of-life issues is vitally important. If done sensitively and as part of ongoing medical care, discussing whether to resuscitate, when to seek hospice care and where patients want to spend the last days of their lives can actually empower patients, rather than making patients lose hope, say Keating and other palliative care experts. Counselling a patient through these issues can help the patient gain some control over treatment and over the final stage of their lives.
A study published Jan. 10 in the Journal of Clinical Oncology found that patients who watched a six-minute video explaining lifesaving procedures, hospitalized care and palliative care made much different choices than those patients who didn't watch the video. Of 23 brain cancer patients who watched the video, 91% chose care designed primarily to keep them comfortable rather than basic hospital care or life-prolonging care. The latter includes CPR and ventilation. Of 27 subjects who heard a description of the different care levels but didn't watch the video, 22% chose comfort care, 52% chose basic care and 26% of patients chose life-prolonging care. An abstract and the full text of the study are available here.
According to the LA Times, in an article entitled, Choices at the End of Life, published January 22, 2010, and available here, research also has shown that informing patients about end-of-life care can reduce medical costs. Moreover, nurses and family members reported more physical distress and worse quality of death in the uninformed patients.
According to the Times, "[e]very year, billions of dollars are spent in the United States to treat terminally ill patients during their final year of life. Tests, procedures and hospitalizations do little to prolong or improve the quality of that life, research suggests, and in fact may make the final days of terminal illness more emotionally upsetting for patients and their families."
The Centers for Medicare and Medicaid Services, according to the Times, "estimate that 5% of the beneficiaries who die each year take up 30% of the $446-billion annual Medicare budget. About 80% of that money is spent during the final month, on mechanical ventilators, resuscitation and other aggressive life-sustaining care," despite the fact that these agressive steps are so often futile. A 2009 study published in the New England Journal of Medicine (abstract available here) found that just 18% of adults older than 65 who received cardiopulmonary resuscitation in the hospital survived the procedure long enough to be discharged. In addition, researchers found the procedure in some cases prolonged patients' suffering.
"People may think that the more money spent on their healthcare, the better care and quality of life purchased. At the end of life, it doesn't work that way," says Holly G. Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute at Harvard Medical School according to the Times article. She was one of the authors on an end-of-life care study published last year in the Archives of Internal Medicine. "We found that most of the costs of end-of-life care pay for burdensome, non-curative care that offers no substantial survival advantage."
Overall, end-of-life discussions and the use of advance directives, which allow patients to state their treatment wishes and appoint someone to make medical decisions on their behalf, seem to lead to happier patients and lower medical costs. Of course, these studies only confirm what every experienced estate planner already knew anecdotally. Clients with comprehensive estate planning, including powers of attorney for heath care, and advanced directives, are enpowered, rather than helpless to deal with changing circumstances.
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