Finding Support After a Cancer Death

If hospice was involved, bereavement support is not an extra. Medicare rules require a hospice to do three things:

1. Run an organized bereavement program under the supervision of a qualified professional.
2. Write a bereavement plan of care setting out what will be offered and how often.
3. Make those services available to the family, and to others in that plan, for up to one year following the death.

It is part of the hospice benefit. There is no separate bill for it.

That year is easy to lose. Most hospices make contact by letter or phone in the first weeks. You are numb then, and dealing with paperwork. If you do not respond, the calls taper off.

You are allowed to call back later. Month seven is a perfectly normal time to want help, and the door has not closed.

Ask for the bereavement coordinator by name. Ask what is actually on offer: individual counseling, a group for spouses, a group for adult children, memorial services, a program for grandchildren, phone check-ins. Ask whether they serve people whose relative did not die with that hospice. Many do.

Many people die in hospital. Or at home without hospice. Or after treatment stopped working faster than anyone expected.

Ask the palliative care team, the oncology social worker, or the cancer center's supportive care department what bereavement follow-up they run. Some large cancer centers have their own programs, and will take calls from families months afterwards.

Hospices in your area may also open groups to the wider community, free or on a sliding scale. So it is worth calling the local hospice even if your person was never their patient.

NCI's summary is useful precisely because it refuses to be tidy. There is no typical grief response. For most people, symptoms lessen somewhere between about six months and two years.

Grief is not a staircase. Waves come back on birthdays. At the smell of a hospital corridor. When a song plays in a supermarket.

What warrants an assessment is not intensity. It is persistence, and loss of function. NCI describes complicated grief as symptoms that do not improve, last a long time, cause extreme distress and affect several areas of life.

In practice, ask yourself whether you are eating, sleeping, working and speaking to anyone. Then ask whether that has been true for months rather than weeks. Three things raise the risk: losing someone suddenly, having little social support, and having had a difficult relationship with the person who died.

Treatment exists and works. Cognitive behavioral therapy adapted for grief has the best evidence. Antidepressants can treat depression that comes with grief. NCI notes they give less relief and take longer to work than in depression without grief. It also notes that combining medication with therapy does better than either alone.

Is anyone in the family thinking about not wanting to be here? Call or text 988 for the Suicide and Crisis Lifeline, or 911 in an emergency. That is not an overreaction.

Children often move in and out of grief quickly. They play one hour and are distraught the next. Adults sometimes read that as coping.

Specialist peer groups help more than most people expect:

• The Dougy Center, 503-775-5683, pioneered peer grief support for children and teens. It keeps a worldwide directory of programs at dougy.org/program-finder.
• The National Alliance for Children's Grief, (866) 432-1542, lists local providers at nacg.org/find-support.

Tell school counselors what happened, in writing, so that a bad week is read correctly.

• CancerCare, 800-813-HOPE (4673), has oncology social workers, free individual counseling and bereavement support groups. It takes calls from families after a death, not only during treatment.
• The Cancer Support Community helpline, 888-793-9355, will find local groups and services.
• The Hospice Foundation of America, 1-800-854-3402, publishes free grief material and runs an Ask an Expert service.
• Dialing 211 reaches local help with food, housing, utilities and funeral costs.

Grief and administration arrive together, which is its own cruelty.

Order more copies of the death certificate than you think you need. Expect medical bills to keep coming for months, including corrected ones. Ask the hospital for a final itemized account rather than paying summary statements, and check it.

If bills or collection letters become a problem, call the Patient Advocate Foundation on (800) 532-5274. Its case managers take on medical debt and insurance disputes at no cost.

Ask one person you trust to handle post and phone calls for a few weeks. It is a real job, and it is delegable. People who want to help are usually relieved to be given something concrete.

• Centers for Medicare & Medicaid Services — Medicare Benefit Policy Manual, Chapter 9: Coverage of Hospice Services
• National Cancer Institute — Grief, Bereavement, and Loss (PDQ), Patient Version
• American Cancer Society — Coping With the Loss of a Loved One
• 988 Suicide and Crisis Lifeline