Disenfranchised Grief: When No One Seems to Understand Your Loss in Home Health and Hospice

Home health and hospice workers are no strangers to grief. They spend their days holding hands and holding space for patients' families and friends. They dry tears when patients pass away. But when they feel the loss of a patient keenly, they may find a lack of understanding among their own loved ones — and even within themselves.

This kind of grief is what psychologists call "disenfranchised grief." It's a disconnection from a normal and important human experience, and it demands recognition.

What Is Disenfranchised Grief?

The concept of disenfranchised grief comes from the work of Dr. Kenneth Doka, a renowned grief expert and Senior Vice-President of Grief Programs for the Hospice Foundation of America. Dr. Doka originally wrote about disenfranchised grief in 1989 to describe grief experiences that society fails to recognize or support.

According to Dr. Doka, society has grief norms that define how, when, and how much people may grieve. When a person's grief seems to fall outside these norms, they may feel they don't have the right to grieve.

There are many types of disenfranchised grief, including:

  • Death of a pet
  • Miscarriage or stillbirth
  • Death of a chosen family member
  • Taboo-related deaths (suicide, overdose, etc.)

People may also experience disenfranchised grief due to non-death losses, such as the ending of a friendship or a job loss. Anyone experiencing a loss has the right to grieve and to get help if the grief becomes overwhelming. 

Therapy is often helpful, and there are remote support groups for all kinds of disenfranchised grief. If someone can’t afford one-on-one counseling, these groups can be extremely beneficial.

Unrecognized Grief Among Home Health and Hospice Workers

Home health and hospice professionals work intimately with patients and develop close connections with them. These professionals often experience grief when a patient dies, yet they often get the message that it's "not a big deal."

They may impose those feelings on themselves, perhaps seeing their own grief as less valid than those of the patient's family members. Other people in the healthcare provider's life may reinforce feelings of guilt, dismissing the deceased individual as "just a patient" or implying that the provider didn't truly know them.

These implications don't make the grief go away, but they can make someone feel guilty about experiencing it.

The Consequences of Disenfranchised Grief

When a person experiences disenfranchised grief, they don't receive the support and validation they need to process the loss and their feelings around it. They have all the emotional experiences of grief, such as sadness, difficulty concentrating, or distressing thoughts of missing the person, but a lack of recognition makes it harder to move on.

For some people, disenfranchised grief turns into complicated grief, a prolonged process of ongoing distress and difficulty meeting day-to-day obligations. In healthcare settings, including home health and hospice, repeated instances of disenfranchised grief can increase the risk of burnout.

Coping with Disenfranchised Grief as a Home Health or Hospice Worker

The American Hospice Foundation stresses the need for home health and hospice workers to process their grief, stating:

Since hospice workers often become like a part of the patient’s family, their grief can be personal. Just as the family needs to mourn, so do hospice workers or their capacity to mourn can be compromised over time.

In other words, a home health or hospice worker's personal and professional wellness depends on their right to grieve. 

The first step is to acknowledge the grief's validity. Others may minimize the grief, implicitly or explicitly, but the feelings are real, and the grieving person has the right to mourn. That includes the right to express their feelings to others or in a journal, express sadness through personal ritual, or talk to a therapist.

Most importantly, people experiencing disenfranchised grief need to be compassionate with themselves. It's okay to miss someone who's gone, no matter who they are or how the grieving person knew them.

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