Studies investigate health care at the end of life

Patients with advanced cancer who discuss end-of-life care with their physicians appear to have lower health care costs in the final week of life than those who do not, according to a report in the March 9 issue of Archives of Internal Medicine, one of the JAMA/Archives journals. A second report finds that black and Hispanic patients tend to have higher health care costs at the end of life than white patients, despite dying of similar causes. Two other articles in the same issue examine dying patients' feelings of abandonment by physicians and reasons that patients request physician aid in dying in Oregon. A disproportionate share of medical costs occur at the end of life, according to background information in the first article. Almost one-third of Medicare expenditures are attributable to the 5 percent of beneficiaries who die each year, and about one-third of expenses in the last year of life are spent in the final month. Previous studies suggest that most of these costs result from life-sustaining care, including resuscitation and mechanical ventilation.

Baohui Zhang, M.S., of the Dana-Farber Cancer Institute, Boston, and colleagues studied 603 patients who were part of the Coping With Cancer study, funded by the National Institute of Mental Health and the National Cancer Institute. At the beginning of the study—between 2002 and 2007—188 (31.2 percent) reported discussing their wishes about end-of-life care with their physicians. They were then followed up through death.

In the final week of life, patients who reported having end-of-life discussions with their physicians had average aggregate health care costs of $1,876, compared with $2,917 for patients who did not. Formal and informal caregivers who were interviewed after patients' deaths reported that those with higher costs also had a worse quality of death in their final week.

In the second article about end-of-life costs, Amresh Hanchate, Ph.D., of Boston University School of Medicine, and colleagues report on an analysis of data from 158,780 Medicare beneficiaries who died in 2001. In the last six months of life, costs varied significantly by racial and ethnic background—costs for whites averaged $20,166, compared with $26,704 for blacks and $31,702 for Hispanics.

"Although 40 percent to 60 percent of these excess differences are associated with geography, i.e., living in high–medical-expenditure areas, substantial differences remain, even after adjustment for many patient characteristics in addition to geographic variables," the authors write. "Strikingly higher rates of use of intensive end-of-life treatments such as ICU [intensive care unit] and ventilators account for most of these residual differences."

"Therefore, at life's end, minorities often receive more expensive but not necessarily life-enhancing care," they conclude. "It is unclear how much of this was actively sought, or the extent to which racial and ethnic differences are principally driven by how choices are presented or how they are 'heard.' These would be fruitful questions for future research."

(Arch Intern Med. 2009;169[5]:480-488, 493-501. Available pre-embargo to the media at www.jamamedia.org.)

Patients and Families Report Feeling Abandoned by Physicians at the End of Life

Patients who are dying and their families report that feelings of abandonment by their physicians at the end of life have two components: a loss of continuity of care before death and a lack of closure near death or afterward. In another article in the March 9 issue, Anthony L. Back, M.D., of Fred Hutchinson Cancer Research Center and University of Washington, Seattle, and colleagues identified 55 patients with incurable cancer or advanced lung disease who were expected to live a year or less. These patients, along with 31 physicians, 36 family caregivers and 25 nurses involved in their care, were interviewed at enrollment and again at four to six months and at 12 months.

"Early on, patients and family caregivers fear that their physician, whose expertise and caring they have come to depend on, will become unavailable," the authors write. "Physicians are aware of this fear and attempt to address it with reassurance or continuity strategies. Yet, as death approaches, some patients and families may feel abandoned nonetheless because they lose the continuity of their physician's expertise or their relationship with that physician."

"Near death or afterward, they may also experience a lack of closure of that relationship. Most of these physicians are not consciously aware of having abandoned their patients. Instead, they report lack of closure or a feeling of unfinished business." The findings could help physicians structure care to maintain the professional value of non-abandonment, including use of non-hospice palliative care or closure-promoting communication strategies involving nurses and other members of the health care team.

(Arch Intern Med. 2009;169[5]:474-479. To contact Anthony L. Back, M.D., call Dean Forbes at 206-667-2896 or e-mail dforbes@fhcrc.org.)

Oregonians Interested in Physician Aid in Dying Appear Motivated by Fear of Future Events

Individuals exploring physician aid in dying in Oregon appear to be motivated by worries about future pain and loss of autonomy rather than current symptoms, according to another report in the same issue. Linda Ganzini, M.D., M.P.H., and colleagues at Portland Veterans' Affairs Medical Center and Oregon Health and Science University, Portland, surveyed 56 individuals who either requested physician aid in dying or contacted a related advocacy organization. Participants were asked to rate the importance of 29 reasons for seeking this option on a scale of one (least important) to five (most important).

The most important reasons—with median (midpoint) scores of five—were wanting to die at home and control the surrounding circumstances of death; loss of independence; and concerns about future pain, poor quality of life and inability to care for one's self. All current physical symptoms were rated as unimportant (one).

"Our data suggest that when patients first request physician aid in dying, they do so not because of physical symptoms or quality of life at the time of the request but in anticipation of future suffering that they perceive as intolerable. Their desire to die is not strong, and they do not believe that their life is poor in quality, meaningless or worthless. Rather, they appear to be protecting against the risk of future experience they do not believe they can endure," the authors write. "When confronted with a request for physician aid in dying, health care providers should first work to bolster the patient's sense of control and to educate and reassure the patient regarding management of future symptoms."

(Arch Intern Med. 2009;169[5]:489-492. To contact Linda Ganzini, M.D., M.P.H., call Jim Newman at 503-494-8231 or e-mail newmanj@ohsu.edu.)

Source: JAMA and Archives Journals