October 2006 | Back to Table of Contents

Clinical and Health Affairs

Helping People Cope with Bereavement

An Opportunity for Health Care Providers to Link Web-based Resources across Minnesota

By Aminah Jatoi, M.D., Jane A. Jacobs, Elizabeth Zimmermann, M.B.A., Mary E. Johnson, Phuong L. Nguyen, M.D., and Lynn C. Hartmann, M.D.
 

Abstract
The death of a loved one has a profound effect on the surviving spouse or partner, family members, and friends. But the bereaved may not always get the help and support they need. This article reviews the toll that grief takes on individuals and society and highlights the importance of connecting grieving loved ones with resources that can help them. It also suggests a need for health care institutions across the state to share information about their particular resources via the Internet with health care providers and patients.

As health care providers, we often send a letter of condolence when a patient dies. In it, we express our sympathy, our sorrow to the loved ones. Described as a “concrete gift that the recipient can and will review over and over,” this letter is truly important.¹ But should we be doing more to help the deceased patient’s grieving family and friends? Can we do more? This article suggests that the answer to both of these questions is Yes.

The Impact of Grief

The death of a loved one is a catastrophic event. In an effort to better understand its impact in relationship to other major life events and how that impact has changed over time, Miller and Rahe studied how people rate the emotional impact of a number of life events at 3 points over 30 years.² These major life events included death of a spouse, divorce, a jail term, retirement, Christmas, addition of a new family member, death of a close family member, and death of a close friend. Four hundred twenty-seven individuals ranked, from most stressful to least stressful, a total of 43 such events. The death of a spouse stood out as the most devastating and ranked first each time the survey was conducted. The death of a close family member placed fifth in 1965, second in 1977, and third in 1995. Similarly, the death of a close friend ranked 17th in 1965, 15th in 1977, and eighth in 1995. These data underscore the major negative impact associated with losing a loved one, especially a spouse.

Several other studies have focused specifically on spousal bereavement and its ramifications. Using the National Center for Health Statistics Multiple-Cause-of-Death Files for the years 1991 through 1996, Luoma and Pearson observed an approximately 17-fold increase in suicide among white widowed men between 20 and 34 years of age and a 9-fold increase among African-American men within the same age range.³ Although these data do not delineate whether bereavement or other factors associated with the death of a spouse led to the high suicide rates, they do emphasize the importance of addressing potential bereavement needs, particularly among young widowed men. Other population-based studies also show that rates of demise increase for men after the loss of a spouse. For example, Mellstrom and colleagues found that among 360,000 surviving spouses, men in their 70s had a 48% higher mortality rate compared with the general population, whereas women in this age range had only a 22% higher mortality rate.⁴ In this study, deaths of the surviving spouses were attributable to cancer, heart disease, accidents, and cirrhosis, as well as to suicide.

Mortality is only one measure of the impact of grief on a surviving spouse. Zisook and colleagues assessed 328 widows and widowers 2 months after their spouse’s death.⁵ Rates of major, minor, and subsyndromal depression were 20%, 20%, and 11%, respectively. Slightly more than half, or, in effect, the majority of individuals, had unmet needs, as suggested by their persistent symptoms of depression. Qualitative research has sharpened our understanding of what the death of a spouse or partner means to an individual. In one such study, a bereaved husband described the loss of his wife as follows: “I lost the best friend I’ll ever have. … You lose a big part of yourself because … two become one. … Every dream … she was included in … all of a sudden those dreams were not there.”⁶ Taken together, these quantitative and qualitative studies suggest that all deaths are difficult for loved ones to cope with but that bereavement following the death of a spouse or partner is particularly problematic and poignant.

Finally, the ramifications of bereavement carry a financial as well as an emotional cost. The Wall Street Journal reported in 2002 that the annual cost of grief from a loved one’s death totaled $37.6 billion for American businesses, a figure that presumably reflects the cost of time off from work as well as increased health care utilization by the survivor.⁷ Thus, well beyond the despair of an individual, grief exacts a heavy toll on the community.

Unmet Needs of the Grieving

A number of resources are available to help the bereaved. They include a variety of support groups including those that are Internet- and church-based, those that are affiliated with health care facilities, and those that are associated with hospice services; services provided by other community nursing groups; and literature about how to cope with a loss. These resources have been described as helpful, although their effectiveness has not been established by randomized trials.^8-10

Are the needs of grieving spouses and partners being met as well as they can be? Few studies have focused on this question, and those that have have found that the answer appears to be No. Kojlak and colleagues interviewed 42 families of patients who had died in a hospital: 40% reported they received no support to help with their grief, and 48% said they desired information on community resources to help them cope.¹¹ This study also evaluated bereaved individuals shortly after the death of a loved one and found that families may be highly receptive to receiving information on community resources very early on. In another study, Billings and Kolton conducted telephone interviews with 53 individuals who had lost a hospitalized relative. Interviews were conducted 5 to 12 months after the death of a family member from non-trauma–related causes.¹² These investigators found that commonly recommended bereavement services were lacking. They also observed that, although 19% of respondents had sought professional help, physicians played no role in arranging for such help. It appears that health care providers are not providing adequate bereavement resources to those in need.

On a separate but related matter, patients’ anticipatory bereavement, or their own sadness over the prospect that their spouse or partner will grieve after their death, appears to go unrecognized in cancer patients at the end of life. Are the needs of dying patients as they pertain to anticipatory bereavement being met? Booth and others interviewed 61 patients with gynecological malignancies and asked about their greatest concerns.¹³ “Her partner” was listed among the respondents’ top 10 worries. In other words, many of these patients appeared to be suffering from anxiety directly related to concerns about how their partners will cope after they are gone. Thus, it is plausible that bereavement resources might provide solace not only to those who have lost loved ones but also to the dying patient.

A New Resource

Support groups and other resources are available in Minnesota. Although the Internet can be tremendously useful for helping people identify them, grieving patients and family members may need extra help finding what they need because information on the Internet isn’t always organized in a way that’s logical and useful and because of the sheer volume of information that is available. For example, a Google search for the words “depression,” “services,” and “Olmsted County” (home of Mayo Clinic) yielded 7,870 hits. Bereaved individuals may not be capable of sifting through hundreds or thousands of Web sites to find help for coping with their grief.

Mayo Clinic recently developed a Web site (www.mayoclinic.org/support-groups/) that is designed to serve as a resource for health care providers who are interested in helping grieving patients as well as bereaved family members and friends who are struggling with grief. Included on this site are links to local and national support groups and organizations and a list of reading materials, videos, and other resources that might help grieving individuals. Eventually, we hope to contact spouses and partners following the death of a loved one and make them aware of relevant, potentially helpful resources catalogued on the site.

We acknowledge that the Web site is a work in progress and that a number of other health care facilities throughout the state also have invested effort in providing Web-based resources for individuals trying to cope with grief. The table on p. 43 includes a partial list of related Web sites. Mayo Clinic is working to include links to those sites and others on its own Web site. Our hope is that the information on bereavement resources will be used by the people who need it the most: physicians and other health care providers and those who are grieving the death of a loved one.

Conclusion
Loss of a loved one is a life stressor that can profoundly affect health. Yet health care providers may not always be aware of resources that are available to help the bereaved. The Internet has tremendous potential for connecting both health care providers and the bereaved with support services and other resources. To maximize this potential, Mayo Clinic has created a Web site that eventually will link health care providers and grieving individuals and families with local and national resources. We invite any health care facility that lists support groups and other resources on its Web site to link to the Mayo Clinic site (www.mayoclinic.org/support-groups/), and, in turn, Mayo will work to include such bereavement links on its site. The hope is that by bringing together as many local and national resources as possible on one comprehensive site and making them readily available to all health care providers, medical facilities, patients, and families within the state, the needs of the bereaved will be better served. MM

Aminah Jatoi is a professor in the department of oncology, Jane Jacobs and Elizabeth Zimmermann are in the department of public affairs, Mary Johnson is a senior chaplain in the department of chaplain services, Phuong Nguyen is an associate professor in the department of laboratory medicine and pathology, and Lynn Hartmann is a professor of oncology at Mayo Clinic in Rochester.


References
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