Web Exclusives

Hospice Benefits Extend Beyond Patients

By Jamie Santa Cruz

Surviving family members of hospice patients derive benefits from hospice treatment, according to a recent study.

Most research on hospice has focused on the benefits to the dying, but a new study from researchers at the Icahn School of Medicine at Mount Sinai has found that hospice care offers benefits for surviving family members as well. Specifically, when patients in the study received hospice care, their bereaved spouses were more likely to see an improvement in symptoms of depression compared with those who did not.1

"The treatment we provide to each individual definitely has downstream effects on the well-being of loved ones," says Amy Kelley, MD, MSHS, an assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine and senior author of the study. "We can clearly see that there's a benefit for the surviving spouse."

The report, recently published in JAMA Internal Medicine, relied on data from the Health and Retirement Study, a large national research project that has been ongoing for decades. The Health and Retirement Study is unique in the sense that it attempts to enroll not only individuals but also their partners, enabling researchers to search for surviving spouses of enrollees who had died. They then relied on propensity score matching to match hospice users with comparable nonhospice users. Finally, they examined how the spouses of the deceased enrollees ranked on a depression scale before their partners' death as well as at several points after the loss.

Two significant findings emerged from the data. First, spouses in general showed higher rates of depression following their partners' deaths, regardless of whether the partner had received hospice care or not. That finding is not surprising, says Katherine Ornstein, PhD, MPH, an assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine and lead author of the study, but it does underscore for clinicians the need to care for surviving spouses.

The second finding, meanwhile, was that significantly more spouses in the hospice group showed improvement of depression after a spouse's death compared with the nonhospice group. In other words, although spouses in general were more depressed following a partner's death, for a subgroup of the spouses of hospice users, the number of depressive symptoms actually lessened. The effects were modest, but still significant. "It's not 100% who are doing better," Ornstein says. "But it is an improvement [such] that if it was a medication, we would prescribe it."

Notably, the benefits to spouses were more clearly evident beyond the one-year period after death—an important point, Ornstein says, since researchers rarely follow caregivers over a long period of time. "The effects of hospice may take longer to see just because it's such a difficult time," she says, "but there does seem to be a positive effect" over the long term.

Connections to Previous Research
The study builds on previous research on the benefits of hospice care. Considerable benefit has been shown for patients themselves: Hospice users are less likely to experience physical and emotional distress at the end of life,2 to be hospitalized, to be admitted to the intensive care unit, or to undergo invasive procedures in the last weeks of life. 3,4 They are more likely to die at home,3,4 and family members of hospice users report greater satisfaction with their loved ones' quality of care.5 Despite assumptions to the contrary, some research even suggests that hospice services may prolong life expectancy for certain groups of patients.6 Furthermore, enrollment in hospice has also been shown to substantially reduce health care costs at the end of life.3, 4

Previous research has found some benefit of hospice for survivors as well. For example, a 2010 study in the Journal of Clinical Oncology found that bereaved caregivers of cancer patients were less likely to experience posttraumatic stress disorder or prolonged grief disorder when loved ones died in home hospice care rather than in an intensive care unit or hospital setting.2 However, research to date on caregivers has been restricted to caregivers of cancer patients in particular, where hospice use has historically been most common. In recent years, meanwhile, hospice use has become much more prevalent in patient groups other than cancer patients, including among heart failure and dementia patients. The new contribution of Kelley and Ornstein's work, therefore, is that it expands the focus beyond cancer patients to look at caregivers of hospice patients in general.

As for why hospice might reduce depression among caregivers, the answer may lie in the fact that hospice provides direct support for families as well as for patients, according to Kelley. For example, though hospice programs vary in the services they offer, many provide phone calls, letters, or cards, educational materials about dealing with grief, home visits, support groups, predeath planning, and individual or group therapy for families.

But beyond the benefits from these direct services, some of the benefits of hospice for caregivers may also be indirect. Kelley says prior research suggests that difficult treatment experiences are very stressful and upsetting for family members; thus, improving quality of life for a dying person likely produces positive effects for family members as well. "If you're seeing your partner suffering from pain or they're spending all of their time in the hospital, and hospice can help to remedy those problems, get them home, and get their shortness of breath under control—I can only suspect that that would directly relate to [the spouse's] mental health," she says.

Implications for Physicians
In Kelley and Ornstein's research, depressive symptoms among surviving spouses were quite high overall, a point that Kelley says clinicians should bear in mind when caring for terminally ill patients. The medical community, she believes, "could do a whole lot better for the spouses throughout the course of someone's illness. [We need to] recognize upstream before the end of life that this is not just the patient suffering, but this is a family issue."

As for how to help, the obvious first step, according to Kelley, is for clinicians to talk to families who are eligible for hospice and make a recommendation that they enroll. "Help people avail themselves of that benefit," she says.

But many seriously ill patients aren't eligible for hospice, so clinicians need to improve methods of helping patients and families in other ways as well. Currently, patients must have a prognosis of six months or less to be eligible for hospice, and they must also agree to forgo all treatments aimed at curing their disease, such as chemotherapy or radiation. For those who don't meet these criteria, Kelley says, physicians can and should aid patients and families in accessing nonhospice palliative care services. At present, more than 60% of hospitals with more than 55 beds have palliative care teams,7 but many physicians and patients may be unaware of both the availability of palliative care and its potential benefits, according to Kelley.

Although research is ongoing, Ornstein believes efforts to help patients access palliative care and hospice services may produce savings in health care not only for ill patients themselves, but also for their family members. After all, she notes, a large number of hospice patients and their spouses are Medicare beneficiaries. If hospice treatment helps spouses cope with depression and prevents them from having to seek treatment for it, she says, "that will be cost saving" in the long run.

Future Directions for Hospice
Although eligibility requirements currently exclude many seriously ill patients, the benefits of hospice care for both patients and spouses may indicate that expanding access could be a wise step for the future. On the one hand, Kelley says, no one wants to disrupt a concept that is already working well. "There's a whole lot about [hospice] that is definitely right," she says. "It's high quality and we see a lot of great outcomes." On the other hand, eligibility restrictions leave a big gap, and many patients are excluded who could reap substantial benefits. Therefore, she says, various researchers are currently exploring the viability of open-access hospice and of alterations to reimbursement structures for hospice.

While hospice options may continue to evolve, Ornstein says, for now clinicians should focus on making sure patients and families who are eligible are encouraged to enroll. "For the appropriate patient, this may be a high-value intervention that can benefit both the patient and his or her family," she says. "Providers should really think about the entire family as they're thinking about end-of-life care needs."

— Jamie Santa Cruz is a freelance writer based in Englewood, Colorado.

1. Ornstein KA, Aldridge MD, Garrido MM, Gorges R, Meier DE, Kelley AS. Association between hospice use and depressive symptoms in surviving spouses. JAMA Intern Med. 2015;175(7):1138-1146.

2. Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol. 2010;28(29):4457-4464.

3. Obermeyer Z, Makar M, Abujaber S, Dominici F, Block S, Cutler DM. Association between the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer. JAMA. 2014;312(18):1888-1896.

4. Kelley AS, Deb P, Du Q, Aldridge Carlson MD, Morrison RS. Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay. Health Aff (Millwood). 2013;32(3):552-561.

5. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291(1):88-93.

6. Connor SR, Pyenson B, Fitch K, Spence C, Iwasaki K. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage. 2007;33(3):238-246.

7. Morrison RS, Augustin R, Souvanna P, Meier DE. America's care of serious illness: a state-by-state report card on access to palliative care in our nation's hospitals. J Palliat Med. 2011;14(10):1094-1096.