Anticipatory grief, also referred to as anticipatory loss or preparatory grief, is the distress a person may feel in the days, months or even years before the death of a loved one or other impending loss. “It’s the experience of knowing that a change is coming, and starting to experience bereavement in the face of that,” says Allison Werner-Lin, Ph.D., a licensed clinical social worker and associate professor at the University of Pennsylvania’s School of Social Policy and Practice in Philadelphia. Many of us have experienced anticipatory grief without realizing there’s a name for it, she adds.
Some experts say anticipatory grief, when managed with coping techniques, can lessen the pain of post-loss grief. Others argue grief before loss has no effect on grief after loss.
Who Has Anticipatory Grief, and When?
Patients with a terminal illness, as well as their family members, friends and caregivers, often experience anticipatory grief. However, any kind of looming change can bring on anticipatory grief. This is true “even if the change is exciting and anticipated and chosen,” says Werner-Lin. For example, a person who puts in notice at her job may grieve the loss of friendship she expects will happen when she no longer sees her current co-workers every day.
Scenarios that may provoke anticipatory grief include, but are not limited to:
- Diagnosis or progression of a degenerative disease, such as Alzheimer’s disease, other forms of dementia or Parkinson’s disease
In one study conducted in Cork, Ireland, 29 people caring for a family member with Parkinson’s filled out questionnaires to assess their levels of anticipatory grief. Caregivers “were preoccupied with thoughts about…what life could have been if they were never diagnosed,” researchers found.
- End-of-life care
Anticipatory grief may affect the caregiver, the patient or both. In one study of family caregivers in Japan, a woman taking care of her husband, a cancer patient who was expected to die within six months, said, “I become anxious thinking about the future even when I am asleep. What should I do? My husband is the firstborn son. His 92-year-old mother is still doing well. He is genuinely firstborn. Everyone in the household relies on the firstborn son, and everything important is left to him. If he dies, everyone will be troubled.”
- Caring for children with chronic disease
- Hereditary cancer risk
Anticipatory grief often surfaces in people who have genetic conditions that elevate their cancer risk, says Werner-Lin, who is also a senior advisor to the National Cancer Institute’s Clinical Genetics Branch and studies patients who have Li-Fraumeni Syndrome and BRCA mutations. In these cases, the patient imagines when a cancer diagnosis may come and how it will change their quality of life.
- Awaiting an organ transplant
Besides grieving the possible scenarios of their own death, patients on a heart transplant list “were also grieving in this way for their potential heart donor and the death that would have to happen to extend their own lives,” according to a study published in the Journal of Heart and Lung Transplantation.
A review of 134 studies of the social and psychological challenges that face amputees found that the time before the operation can be the most upsetting. Patients express grief over the unknowns surrounding their future, including “pain, financial difficulties, general health and future functional capabilities at home or on the job.”
- Impending loss of a pet
- A new job, a new relationship, a geographic move or a teen leaving home for college
Even planned, desired life changes can prompt anticipatory grief related to the prospective loss of identity, friends or routine.
Anticipatory grief can also surface around pregnancy and childbirth, including:
- In-utero complications
Parents who learn that their unborn baby may not survive can experience anticipatory grief around the potential loss.
- Premature birth
“Anticipatory grief may set in as parents mourn the loss of their ‘imagined’ or ‘wished for baby,’ as they struggle to develop a bond with their ‘real baby,’” write researchers in Primary Care of the Premature Infant. In some mothers, these feelings “may be rooted in her belief that her inability to bring her baby to term is a personal failure.”
Anticipatory Grief and Age
The younger a person is, the more severely they may experience anticipatory grief, particularly as it relates to death. In a review of 15 studies exploring anticipatory grief and illness, doctors at the University of Illinois at Chicago found that “younger caregivers and younger patients tended to report higher ratings of anticipatory grief.” In one study of adults with terminal cancer, patients under age 25 experienced more anticipatory grief than patients age 26 to 55. The younger group “viewed death as extinction,” influencing their grief, researchers found.
Anticipatory Grief vs. Conventional Grief: What’s the Difference?
Think of conventional grief as “grieving backward,” says Werner-Lin—mourning a loss that has already happened. Anticipatory grief is forward-looking. We’re grieving “what we still believe we might lose,” she says.
This leaves space for hope, however unrealistic, that the loss may not occur. Anticipatory grievers might find themselves “hanging on to possibilities” in ways that may not be helpful, Werner-Lin says. Conversely, in a situation like a pandemic, it can be helpful to step back and remember that the worst might not happen.
What You Might Feel When Experiencing Anticipatory Grief
People undergoing anticipatory grief report a range of feelings that may include:
- Anger or irritability
- The desire to withdraw from social situations
- An intense preoccupation with the dying person
- Lethargy or lack of motivation
- Loss of control over one’s emotions
The Stages of Anticipatory Grief
There’s no set order to what you might feel as you undergo anticipatory grief, and there’s no “finishing” one feeling before you move to the next. You may experience many emotions one day and none the next. You may think you’re done feeling certain emotions only for them to return days or weeks later.
With that in mind, here are four phases a person with anticipatory grief may experience, separately or simultaneously, in any order, according to the University of Rochester Medical Center, a nonprofit research university in Rochester, New York:
- Accepting that death is inevitable. This phase often co-occurs with feelings of sadness and depression.
- Feeling concern for the dying person. For family and friends, this phase may express itself in regret—for example, feeling regret over past arguments or disagreements with the person they are about to lose. For the dying person, this concern may translate to fear of what it’s like to die.
- Rehearsing the death. A person may become focused on funeral arrangements, saying goodbyes and other concerns related directly to what will happen in the time immediately surrounding the impending death.
- Imagining the future. Family and friends may envision what life will be like without their loved one. This phase may include visualizing holidays and other special occasions without the person or thinking about objects that will be left behind. The person dying may think about similar scenarios, wondering what it will be like for their loved ones to experience life without them. The dying person may also imagine what their own experience may be like after death—what, if anything, comes next.
Potential Benefits of Anticipatory Grief
Anticipatory grief doesn’t necessarily reduce pain after loss. Any potential benefits have largely been studied in the context of anticipatory grief before death.
Some early research suggested the preemptive processing of a loss could help a person better cope once the loss occurred. “Within this paradigm, the bereaved are able to deal with any unfinished business, say their good-byes, clarify any misunderstandings, and prepare for social adjustments to come, thereby having a less distressful and disabling period of bereavement when the death does occur,” according to a research review published in the journal Counselling, Psychotherapy, and Health.
However, some more recent studies argue that anticipatory grief has no effect on post-death bereavement. Others find that pre-loss anticipatory grief may be a factor in predicting prolonged grief disorder.
At best, research is contradictory. However, keep in mind that one doesn’t choose to feel anticipatory grief. More important than considering its benefits is making sure you get the proper help to work through it.
How to Deal With Anticipatory Grief
If you’re experiencing anticipatory grief, it’s important to talk about it with someone. “Grief is a universal human experience,” says Dr. Werner-Lin, and discussing it with others is how you begin to work through it.
She gives the example of a group of rare disease patients and caregivers her research team worked with. Prior to talking about their anticipatory grief, “they all really independently felt like they were just plain struggling and not holding up their end of the bargain of humanity,” she says. “When really what was happening is something we could explain and work through. Talk about the dimensions of it. Talk about where it moved into their lives and filled in cracks and crevices, or was taking over their day-to-day lives and their relationships.”
Dr. Werner-Lin recommends using the American Psychological Association’s Psychologist Locator Program to find a mental health provider who specializes in grief, whether that be a psychologist, psychiatrist, psychiatric nurse practitioner, social worker or counselor.
Common counseling interventions include narrative therapy, which can help the grieving person reframe loss, and active listening, which allows the grieving person ample time and space to talk out their feelings, prompted by insightful questions from the counselor. This type of out-loud musing can help a person process their grief.
Another form of evidence-based intervention is cognitive behavioral therapy. In this type of therapy, grief-related thoughts are identified and processed, and the grieving person is taught to reframe their evaluations about themselves, the world and their future. It focuses on managing distressing emotions and encouraging actions to help a person experience pleasure, joy, and a sense of community.
If you don’t have the financial resources to hire a counselor, it’s still beneficial to talk to family and friends, who can engage in active listening and offer other support that’s important for processing grief, such as empathy and validation.
For an end-of-life patient, anticipatory grief therapy may improve quality of life before death and may alleviate depression.
Many insurance plans cover a percentage of therapy costs retroactively via claims forms. Call the number on your insurance card to ask about policies.
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