Effective grieving is the next frontier for outcomes
Research aims to guide bereavement programs
With the passing of a hospice patient, the focus shifts from facilitating a peaceful death to helping family members pick up the pieces of their damaged lives. As long as those left behind are unable to carry on, the work of hospice is incomplete.
One of the hallmarks of hospice care is bereavement services, a yearlong program that focuses on trying to help parents, spouses, siblings, and children get out from under the pall left by a loved one’s passing. But at the end of the year, do hospices really know how well their program worked?
Sure, hospices can readily recall success stories like the 60-year-old woman who, after 10 months of grieving over her husband’s death from cancer, was able to find joy in walking in the same park she and her husband strolled every day.
What about the other cases? What about the programs that ended abruptly or the ones that ran their yearlong course with the bereaved still on shaky ground? It is with those people in mind that a private study, conducted by two researchers, set out to measure outcomes of bereavement programs so that it could begin to learn how to make them more effective.
"I think bereavement is an uncharted territory right now," says Mary Schultz, RN, BSN, MBA, a surveyor with the Chicago-based Joint Commission For Accreditation of Healthcare Organizations. "It needs more exploration and development."
To date, hospices conduct bereavement programs using traditional methods: Family members meet with bereavement coordinators, participate in memorial services and support groups, and use community resources to fill in the gaps.
Shultz’s research shows people don’t necessarily heal in one year. "Hospices are going by what the Conditions of Participation say — providing bereavement services for 12 months after death," Schultz says. "But it doesn’t mean that everyone will reach the end of their active grieving at the end of that year. I remember a psychologist telling me that a few years ago, and he was right. He said that some people take two, five, or 10 years. And it doesn’t mean that they aren’t grieving effectively. It simply means they need more time."
The bereavement outcomes research is intended to mete out the important factors that result in positive bereavement outcomes, including how age and culture affect the grieving process. If successful, it will help hospices make adjustments to their programs that will account for the differences in the way people grieve.
Researchers are using these indicators to measure grief both at the time of the loved one’s death and a year later:
• change in percentage of times the participants found memories comforting;
• change in percentage of time the participants found that grief influences their ability to make day-to-day decisions;
• change in participants’ ratings of the intensity level of their sadness.
The indicators come in the form of questions. They also help to measure the progression of one’s grieving, says, Nancy Kupka, RN, MS, MPH, director of clinical program development with Heads Up, a population management firm in Palatine, IL, and a researcher in the study. "One of the things we wanted to find out is at what point do we know a person has grieved completely," she says.
According to researchers, hospices should learn more about bereavement outcomes because such information will help them develop better programs, perhaps programs tailored to individuals based on a set of influencing factors.
"Hospices should be interested in bereavement outcomes because it’s a service hospice provides," Schultz says. "Hopefully, every hospice would be interested in measuring their impact on the lives of the survivors just as they are interested in measuring their impact on the patients they served during the living phase."
But Schultz recognizes that because people grieve differently, no single program will be able to address everyone’s needs. Outcomes research will, however, be able to uncover unmet needs of those who do not effectively grieve within a year.
"We need to look at some common needs and some common goals, but provide for people who just don’t progress according to a cookie-cutter pattern," Schultz says. "I would suggest that some community resources will need to be developed to support and enhance the work of hospice."
Researchers will be the first to admit that they are a long way from helping the individual hospice. Before they use their research as a model for others, they say more works needs to be done.
"Our current project needs redesign based on what we found," Schultz says. "We need more time to analyze the current data and redesign the study. What we found was not at all what we expected. The circumstances of the diagnosis, the prognosis, age, sex, culture, and the time frame for referral to hospice more profoundly impacted the grieving phase than we realized.
"We need to go back further and look at the data regarding length of stay, time frame for diagnosis, time frame for aggressive treatment, and circumstances for referral to hospice. We also need to look at some cultural variations, differences in how different sexes and age groups grieve, and differences in the relationship to the patient. I think this is a lot bigger than we first thought."
Measuring bereavement outcomes has proved a difficult task. In June, researchers halted their study because of statistically insignificant data. Still, Schultz says, bereavement is an area that hospices should study.
If the research lives up to its potential, its value, says Schulz, will be in providing guidance to hospices looking at their own programs, but likely will not lead to pathways for grief counseling. In other words, the research intends to uncover effective practices and underserved needs, but will not set rigid guidelines.
"For some it takes a lot longer [to grieve]," Schultz says. "Instituting a pathway in that instance in futile. That doesn’t necessarily mean that the grief is dysfunctional. It simply means that it will take longer — just like some people take longer to heal from pneumonia than others."
Also, she recognizes that hospices provide valuable bereavement services at their own cost. She is sympathetic to the notion that whatever improvements the research points to, it should be received in the context of a yearlong program.
"The biggest obstacle will be funding." Schultz says. "Most likely, the expected outcomes for hospice bereavement will need to be redefined to more closely match what can really be accomplished in a 12-month period."
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