Supporting Children's Grief

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. We asked one of our regular contributors, Vince Chiles, to discuss his experiences with children and grief.

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Vince Chiles

Children often live in the midst of the dying. This fact seems counterintuitive when we think of people at the beginning of their lives, but many children will experience the death of a loved one. In fact one of the most magical things a hospice worker witnesses, is the connection between the terminally ill grandparent and the young child or adolescent. A few years ago, we had a patient whose five year old grandson tucked his grand dad in every night. This was very touching and a powerful reminder of the mystery of the circle of life.

I have seen this connection time and time again, of the young comforting the old in their time of need. The very old and young balance each other and remind us of how our own vulnerability supports the life process. In the Native American traditions there is a simple prayer ‘to all our relations.’ It is often said at the beginning and end of ceremonies to commemorate the actions of the group in relation to those who came before and those who are yet to come. Life is a circle that is connected with death and birth, again and again.

The grieving youngsters’ feelings are real and profound when they lose their ancient guides. The thought of not attending my Aunt Joan’s funeral when she had died thankfully never entered my parents’ minds. All eight of my siblings attended her burial recognizing the finality of life, and validating our grief. There are those families who do elect to exclude youngsters from memorials and funerals. Perhaps they think shielding the child from the presence of the dying and deceased protects them in some way, but I have found this to be a contrary perception that can create more problems. The classic story is that of the Buddha, a prince shielded by all suffering in life, due to an infancy prophecy that the prince would become a holy man. When the young prince had a glimmer of suffering he left the security of his palace to discover the secret of life –desire creates suffering. The king lost his beloved child, to the realities of the world. Children are their own beings who need respect and support through their own grief, not denial or protection.

If we choose not to shield the child from death, how can help guide them through their grief? We can support the grieving child in many ways. It is important to tell the child what is going on with their loved one, and what to expect. ‘Grandma is sick, and she’s not going to get better this time. That means she will eventually die, and we have help from hospice here. They can talk to you if you would like.’ Offering a child or grandchild the services of a hospice social worker can be a great thing for the child or adolescent to prepare for saying goodbye and adjust to the grieving process. When a child or grandchild says goodbye, the parent or grandparent suffers less. It may be a heart-wrenching encounter to witness, but the potential benefits outweigh the consequences of not bidding farewell. Providing grief support resources after some one has died in the form of educational groups, grief and loss camps, support groups, or one-on-one counseling can all help. It is important through that the child be open to these services and that they are able to opt-out or maintain some control if activity becomes to overwhelming.

Children and adolescents grieve differently than adults do. They may need to draw pictures when they are very young to make sense of what has happened, or have some alone time to figure it all out when they are older. I remember a Native American boy I had worked with on the White Mountain Apache Reservation, who was so angry that his father had died when he needed a positive role model in his life. We walked to the White River and started to throw rocks into the water. I challenged him to throw the rocks as far as could across the river, letting go of his anger, and allowing the water to wash away his pain and suffering as his angry rocks were swallowed up by the current.

Finding creative ways to help children and adolescents grieve can also help the adults around them process their loss. Children are grounded in their intuition and haven’t figured out how to rationalize and explain away life’s mysteries. They can draw a picture or express themselves with other creative outlets that inspire us to see their wisdom in spite of their youth. Hospice social workers, bereavement counselors, and volunteers are great resources to families with grieving children and they often provide support to families in need regardless of whether the family received hospice care.

Magic in many instances is an illusion, but the magic in hospice when a child grieves effectively is that they evolve into healthy adults. They learn to see the connections in the circle of life, and recognize the vulnerability we all share. Children who learn to grieve well recognize the interdependence of life, and can appreciate the relationships they have on a deeper level. Helping a child learn how to effectively grief a loss, is a little magic we all could benefit from.

Vince Chiles, MSW

Changes Seen in Nursing Home Usage by Blacks

Tuesday's Orlando Sentinel published an article about the increased use of nursing homes in the black community, both in Florida and around the country. This is a changing trend. In the 1970s, blacks were half as likely as whites to be in nursing homes. Today, they are more likely to be.

The increase of blacks in nursing homes is largely because of Medicare and Medicaid funding changes in the 1980s and 1990s, Smith said. Under the new rules, hospitals were encouraged to discharge patients to nursing homes. But nursing homes received less funding for residents who didn't need skilled care.

The change led to a proliferation of private assisted-living facilities that attracted whites who could afford them. But blacks, who traditionally have lower incomes, less health insurance and smaller retirement incomes, often don't have that option -- and end up in nursing homes where their care is paid for by Medicaid.

The article also states that although it is less expensive to provide community-based care in the home, demand for those programs has outpaced funding, and many services have waiting lists.

Providing Culturally Sensitive Nursing Care

Marilyn Hardy Bougere, MSN, RN, CNS, a nursing instructor at Jacksonville State University in Alabama, provides an article for MinorityNurses.com, addressing how understanding how cultural difference effect a patient experiencing grief, can enhance nursing care. The article itself provides an excellent review of some older literature. Following the article, there are two fictionalized case studies about providing culturally and linguistically competent nursing care. HFA's 2009 Living with Grief teleconference will focus on multiculturalism and end-of-life care.

"As the racial, ethnic and cultural diversity of the U.S. population continues to increase, there is an ever-growing need for the health care profession to become culturally competent in all aspects of care delivery—and this includes the care we provide to grieving patients and their families. A recently published article on cultural diversity and grief states that the need for culturally sensitive grief/bereavement educators and counselors is on the rise and that health care providers must continue to expand their knowledge of the many ways that people grieve."

Racial Differences in the Decision to Revoke Hospice Care

Pallimed's Drew Rosielle, MD, writes about a recent article from the Archives of Internal Medicine, which examined data from 167,000 patients being served by a multi-state hospice group over a five year period. The patients included in the study left hospice care while still alive, a small percentage of whom went on to pursue aggressive treatment. The interesting note, is that African-Americans had 70% higher odds of making the decision to pursue aggressive care than whites.

Hospices Reaching Out to the Hispanic Community

This article from The Kansas City Star, discusses how one local hospice formed an entire Spanish-speaking care team to assist in its outreach to the Hispanic community. In the case described in the article, this team included a nurse, personal aide, and a chaplain.

In the excerpt below, the hospice's chaplain, Michael Arciga, gives his thoughts on why Hispanics underuse hospice care.

"There are a couple of reasons that Hispanics might not seek out hospice care, he said.

First, there is a misconception about hospice among immigrants from Latin American countries. The Spanish word for hospice refers to a place, such as an asylum or an orphanage, not a service that brings health-care aides and social workers to a patient’s home or hospital bedside.

“When they hear ‘hospice,’ they think we’ll take their loved one somewhere and take the family out of it,” Arciga said. “I try to provide education that we go where the patient is. If they’re in the home, great. We just support you in taking care of your loved one.”
The cultural tendency to take care of needs inside the family, rather than seeking outside assistance, also can hamper hospice access in the Hispanic community.

“Within the Latino community, as is true in the African-American community, taking care of your own (is important),” Arciga said. “There is a certain level of distrust with people coming in because there’s a fear of what they are going to do. You have to establish that level of trust first, then they will allow you to provide care to their loved ones.”

Promoting Hospice to Hispanics

This article appearing in the Yakima Herald-Republic (Yakima, Washington) addresses hospice's effort to reach out to Hispanics and other minority groups. In Yakima, efforts to share information with Hispanics have centered on meeting with clergy, holding seminars, and using Spanish-language radio shows to reach Spanish-speaking residents.

Who Wants Hospice: Racial Disparities in Who Receives End-of-Life Care

According to a report by the California HealthCare Foundation, ethnic minorities enroll in hospice care at lower rates than whites. Only six percent of hospice patients were African-American in 2004. Four percent were Asian-American, 15 percent were Latino, and 74 percent were white.

Medicare admissions requirements are thought to be at least partially responsible. For Medicare funding, a hospice patient must forgo all curative treatment, including chemotherapy and dialysis. Ethnic minorities are thought to be more likely to pursue aggressive treatment until the death.

Also, African-Americans are more concerned than other groups about finding caregivers who will respect their culture. White families are more concerned about pain alleviation, while cost of care is the primary concern for Hispanics and Asians.

The report concludes by recommending that (1) Medicare regulations be reformed to allow aggressive treatment concurrent with hospice care; (2) Hospice employees be trained in cultural sensitivity; and, (3) emergency departments expand their bereavement services because ethnic minorities are more likely than whites to die in a hospital setting.

Readers who would like to learn more about being a culturally competent caregiver should mark their calendars for the of spring of 2009, when Hospice Foundation of America will host its 16th annual teleconference: Living With Grief: Challenges of Diversity.