Guest Column: Consortium helps members provide grief support
Challenges of meeting grief needs
By Robin McMahon, LCSW, BCD
Senior Advisor for Grief and Loss Services
The Hospices of the National Capital Region
One of the challenges faced by hospices is a community expectation of hospice as a resource to address grief issues related to life transitions. Individuals facing their own or a loved one’s serious illness, death, and grief frequently contact their local hospice for information and referrals beyond the scope of hospice program services. When these queries arise, "Sorry, we don’t do that" is not an acceptable answer within the culture of hospice caregivers.
We try mightily as clinicians and organizations to identify appropriate referrals. However, being responsive to community information calls can overburden the limited resources of most hospices. A hospice can balance its commitment to its patients and families while answering community calls by maintaining a list of area grief and loss services and collaborating with other providers to establish programs where gaps exist between needs and resources.
Like other hospices, The Hospices of the National Capital Region, which serves Washington, DC, and its Maryland and Virginia suburbs, established a grief counseling center to try to address community needs related to life transitions. When we launched the center three years ago, one of our first actions was to invite all individual practitioners, institutions, and agencies offering grief support to join a consortium of providers.
Our hope was to stay current on available grief support services, to avoid duplicating existing effective services, and to identify unmet needs and collaborate on new services to fill in the gaps. Our partners include other grief counseling centers and government-funded grief programs, self-help organizations (such as Compassionate Friends) for parents whose child has died, faith community bereavement providers, private practitioners who specialize in grief issues, local hospitals that offer bereavement services, a transplant organization, a women’s counseling center, and more.
Though we meet no more than three or four times a year, members of the group provide a valuable network of information and assistance to one another. This was evident on Sept. 11 as agencies responded to the community’s bereavement needs. In addition, consortium members have supplied expertise to one another’s programs as speakers, hotline volunteers, and even as grief support facilitators following a significant death that occurs within one of the consortium agencies.
Based on requests for bereavement services in Spanish and groups for widows and widowers under 50, we initiated specialized groups to address these previously unmet needs.
In order to financially support the referral and counseling functions of the grief counseling center, The Hospices has sought grant funding, sliding scale fees for some of its services, donations from the community, and financial support from within the hospice itself. We rely heavily on volunteers to assist with our camps and workshops for children and teens. And in recent years we have found that student interns — that is masters’ level students in social work, counseling, pastoral counseling, and gerontology — are excellent grief counselors and group facilitators when paired with a seasoned clinician.
The majority of the inquiries our hospice program receives about grief support services fall under approximately seven general categories:
- loss issues of the newly diagnosed and family members, or individuals whose condition seems to be deteriorating;
- specialized losses (e.g., death of a child, miscarriage, violent death, suicide);
- elderly people who are experiencing other losses;
- children and teens and personnel in their schools;
- how to support someone who is grieving;
- bereaved people who have social, mental health, financial, housing, and legal needs;
- family members and friends who live out of state.
While resources vary from state to state and city to city, many of the referrals that are made in metropolitan Washington have counterparts in other areas of the country. Wherever possible in the list below, I have included toll-free numbers for national organizations that will specify the appropriate resources in your area.
Diagnosis of a life-threatening or chronic illness creates losses for the individual diagnosed and for loved ones. It is common for our hospice to receive calls from those affected who are seeking information and support. Contacting an organization formed to address a specific diagnosis, such as cancer, Lou Gehrig’s disease, or Alzheimer’s disease, generally yields a tremendous amount of information about the illness, a list of available support groups, and comfort that there are others who understand.
Here are a few of the toll-free numbers and web sites for the more prevalent diagnoses. Some organizations have on-line chat rooms that can be a great support, particularly for someone suffering from a rare disorder that may not have a local organization.
- ALS Association: (800) 782-4747, www.alsa.org
- Alzheimer’s Society (information about the society): (800) 438-4380, www.alzheimers.org
- Alzheimer’s Association (information about support groups): (800) 272-3900, www.alz.org
- American Cancer Society: (800) ACS-2345, www.cancer.org
- American Diabetes Association: (800) 342-2383, www.diabetes.org
- American Heart Association: (800) AHA-USA1, www.americanheart.org
- American Stroke Association: (888) 4 STROKE;
- Arthritis Foundation: (800) 283-7800, www.arthritis.org
- National Parkinson Foundation: (800) 327-4545, www.parkinson.org.
• Specialized losses. Most hospices and other grief counseling programs have drop-in bereavement groups, where anyone who has experienced a loss through death is welcome. However, the ideal in grief counseling and support is to participate in groups with other grieving persons whose loss or circumstances are similar to yours. This is particularly true for deaths that occur outside the expected normal life cycle.
For parents who have lost a child of any age, a group specific to grieving parents is important. In fact, many parents say there is a tremendous difference between the death of a young child and the death of an adult, and prefer to share with others experiencing a similar grief. Compassionate Friends is a national self-help organization for parents whose child has died. For stillbirth and miscarriage, the neonatal/perinatal department of your local hospital or your OB/GYN office should have information about local resources, including Compassionate Friends. The web site for the National Sudden Infant Death Syndrome center is www.sidscenter.org. Telephone: (703) 821-8955. A pediatrician’s office will be aware of any supports in your community.
For loved ones of victims of a violent death or suicide, community mental health centers, law enforcement family services departments, and social service departments are avenues to explore. Our program or one of our consortium partners periodically hold trauma and suicide groups and workshops.
• Elderly people who are experiencing other losses. The death of a loved one may trigger a series of major life changes and additional losses for older adults, including housing issues, financial problems, and loss of independence. Departments of human services or social services generally have case management services for eligible senior citizens. Area Agencies on Aging (AAA) were established in 1973 under the Older Americans Act to respond to the needs of adults sixty and over in every local community. For more information about AAAs, call the Eldercare Locator at (800) 677-1116 or visit the web site, www.n4a.org.
Be proactive in disseminating information
• Children and teens. The Hospices of the National Capital Region Point of Hope Grief Counseling Center places great emphasis on offering services and information for children, teens, and the important adults in their lives. We try to be proactive in disseminating information so that we will receive the calls when a bereavement emergency arises. In addition to day camps, weekend camps, support groups, holiday workshops, and individual counseling for children and teens, we speak at PTA meetings and provide education to school staff. We also have handouts available on all aspects of child and adolescent grief.
Other resources that hospice can offer include:
— Support for someone who is grieving. We pride ourselves on responding to this topic with direct services, including seminars, handouts, and telephone support.
— Bereaved people who have social, mental health, financial, housing, and legal needs. As with some of the life problems that arise for older adults, community mental health centers and social service agencies are generally best equipped to assist with these services.
— Family members and friends who live out of state. This one is obvious: Hospices in one state refer to hospices in another state. The National Hospice and Palliative Care Organization web site, www.nhpco.org, will provide you with information about hospices in other states.
(Editor’s note: You can contact Robin McMahon at email@example.com if you need additional information about locating community resources for those who grieve.)