Medicare has ground rules for hospice organizations to get paid for providing services. One requirement is for the organization to provide a year of follow-up grief support to the closest “family” of the person who died. In my experiences with several hospice deaths over the past two years, the approaches for follow-up grief support could be improved.
About three weeks after my friend Gary died on home hospice in October 2021, I got a call on my cell phone as I drove around town. It was the hospice grief counselor, calling to offer her condolences. She also wanted to start a conversation about my grief. It was out of the blue. I wasn’t thinking about Gary and his death. This was an unwelcome reminder of the loss. Yet, she was just doing what hospice organizations are required to do, follow-up with grief resources.
I’ve had unexpected phone calls, brochures about grief sent in the mail, and written invitations to attend grief support group meetings. None of these approaches felt appealing or right. There must be better ways to do this.
How hard would it be to add communication preferences to the information on file for the hospice patient’s contact person(s)? What about a text, email, or letter first, offering a phone call with a grief counselor at a mutually convenient time? Many people don’t answer phone calls from numbers that they don’t recognize. With advance arrangements, the mourner can answer the phone and be prepared to talk about the topic, rather than being surprised by an unscheduled call.
Of course, this approach would depend on the age of the surviving family member. It would not work for my 94-year-old mother who doesn’t have a cell phone and doesn’t know how to text. But I’m a 65-year-old baby boomer, and I have had a cell phone for years.
As the year after Gary’s death rolled on, I received several pieces of mail from the hospice. They included colorful brochures on grief and recovery, and a generic cover letter reminding me of the grief support groups available to hospice patients’ family members.
These pieces could have been sent any time of the year. I saved them for reference, but they didn’t strike me as especially helpful. How about a seasonal list of tips for addressing grief? Hospices could send a list of helpful winter-time coping skills during the holidays, suggested memorial plantings in the spring, summer activities to honor a loved one, and autumnal traditions like Day of the Dead or other observances appropriate to local communities.
Email is something I did not receive at all from hospice. While we all don’t need more emails in our in-boxes, emails can provide easy access for website information and online grief group support meetings. Just a click and you can register for a Zoom meeting. Or hospices can send links to helpful videos people can watch about grief. The open rate and click-through responses can be tracked, depending on how the email is sent. This is an underutilized avenue of communication for grief follow-up.
Texts and emails did not exist when hospice started in the 1970s or when Medicare started covering hospice in 1983. It may be time for a technology update for grief support.
The grief follow-up experiences I’ve had with hospice have been awkward and not terribly helpful. Do you have other suggestions to improve this aspect of an extremely important option in end-of-life care? Please share your comments!
Gail Rubin, Certified Thanatologist and The Doyenne of Death®, is speaking at the Southwest Regional Hospice & Palliative Care Symposium in El Paso, Texas on January 19, 2024.