Terminal illness, caregiving, and anticipatory grief

Posted on: August 29th, 2012 by Hope And Cope No Comments

Terminal Illness

The diagnosis of a terminal illness is often quite upsetting for a family. Accepting the fact that a loved one has an illness that may drastically limit their life requires processing. Families need to understand what the likely, realistic outcomes of the illness are, and how to cope with them. It is vital to get the facts about the prognosis and symptoms from your health care provider. Your treating physician is usually the best person to provide information about your terminal illness diagnosis. Make sure that when you are speaking with your health care provider about the details of the terminal illness, you ask questions to clarify anything you do not understand. It is important that you hear, and comprehend, what the illness will mean for you and your family.


Family members are often called upon to provide care for those with terminal illnesses. Spouses and adult children are frequently drafted as caregivers when a loved one begins to decline in functioning. Becoming a caregiver for a family member is no small task. It takes a great deal of physical, mental, and emotional energy. Caregivers often spend countless hours caring for the needs of someone else, and may fail to take the time to care for themselves.

There are several dimensions of caregiving that have been found to significantly impact the experience of family caregivers. These dimensions are as follows:

  • Characteristics of the family caregiver
    • What is the caregiver’s attitude?
      • If their attitude is more positive, they are more likely to have a positive experience
    • Do they have religious beliefs and are these beliefs helpful?
      • Those who have spiritual and/or religious beliefs often have a more positive experience as a caregiver
    • Do they feel the patient is a burden for them?
      • If you feel the patient is a tremendous burden, the experience is likely to be more negative
  • Patient characteristics
    • What is the patient’s attitude like?
      • If the patient has a more positive attitude, the caregiver is likely to have a more positive experience
    • How does the patient relate to their own death?
      • If the patient is better able to come to terms with their impending death, the caregiver often has a more positive experience
  • Symptoms of the illness
    • Is the patient experiencing confusion?
      • High levels of confusion can be very difficult for family caregivers to deal with
    • Does the patient have behavioral symptoms, like acting out physically?
      • Behavioral symptoms like acting out can be associated with a more negative experience for a family caregiver
  • Relational context
    • How do other family members relate to the patient?
      • If other family members are supportive and helpful, caregiver is more likely to have a positive experience
  • Social and professional support
    • More social (i.e., friends) and professional (i.e., health care providers, mental health, etc.) support can help the caregiver have a more positive experience
  • Circumstances surrounding death
    • The moment of death
      • Some family caregivers have more positive experiences when they are present when the patient dies, others have more positive experiences when they are not present
    • Preparedness for death
      • When caregivers feel as if they are prepared for the death of their loved one, they have a better experience leading up to the death and after the death

Those who have notice that a loved one is terminally ill may choose to seek out palliative care and/or hospice care.

What is palliative care? Palliative care is an approach that improves the quality of life of patients and families facing problems associated with life threatening illnesses. The approach focuses on the prevention and relief of suffering by addressing pain and other problems.

What is hospice care? Hospice care is focused on providing support and care for individuals who have life-limiting illnesses. When hospice care is selected, families are no longer seeking cure-oriented treatments. It is important to recognize that hospice care is not intended to hasten death in any way, but rather make an individual comfortable as they near the end of their life. Health care providers in hospice are specially trained to consider the physical, emotional, and psychological aspects associated with end of life care.

Anticipatory Grief

As a caregiver or family member for someone who is terminally ill, you may have some notice before your loved one dies. Even if you do have notice before the death of your loved one that does not necessarily mean the death or grieving process will be easier. When you begin grieving for a loved one before they die, it is called anticipatory grief. More generally, anticipatory grief consists of the reactions to the expected death over past, present, and anticipated losses. Many family members of those with terminal illnesses consider the impact of the loss, after learning about the amount time the person is expected to live. After hearing that a loved one has days, weeks, or months to live, individuals often consider what the death will mean to them.

For a family going through anticipatory grief, it is important to acknowledge the reality of death. Denial of death, or the severity of the illness, often leads to more difficulty facilitating the process for the person dying. It is important to acknowledge that anticipatory grief is painful, and the loss within the family will require some reorganization. A family should also include the dying patient in the grieving process so each member can have their own sense of closure. The person who is dying may have unresolved issues with different family members that can be processed before their death.

Anticipatory grief can be a scary thing to confront. Many people feel panic, anger, a loss of emotional control, fear, and anxiety when they think of their own death or the death of a loved one. Due to the anxiety that may arise in anticipatory grief, it is vital to seek support from others, just as in the post death grieving process. Depending on the type of terminal illness, it can be common to begin grieving specific aspects of your relationship before your loved one dies. You may grieve the loss of intimacy and emotional bond if your loved one has cognitive and/or communication impairments. You might also grieve physical aspects of your relationship (like hugging, for example) if your loved one has physical limitations.

Anticipatory grief can also be helpful in that it can help you prepare for your loss. You can start to develop coping skills that will help you face the changes that will inevitably arise after the death of your loved one. You may also have the chance to express things that you are thinking and feeling to your loved one, before they die. One of the most important aspects to effectively getting through anticipatory grief is communication. Maintaining open communication with health care providers, family members, and the patient can help deal with uncertainty. Communication can also help you feel more prepared for the death of your loved one, which will help you grieve with fewer complications after their death.

Individuals who see themselves as prepared for the death of their loved one cope better after the death. Some elements of preparedness are as follows:

  • Knowing the signs and symptoms to expect in the terminal phase of life
  • Discussing one’s own feelings of grief and emotions
  • Maintaining relationships with friends and family members
  • Prayer (if religious) and talking about the spiritual meaning of death
  • Preparing funeral arrangements

Remember, seeing a mental health professional for group and/or individual therapy can be a helpful and healthy way to help you and your family process your loss.

Here are some links that may be helpful:



Some books that may be helpful:





Cheng, J.O., Lo, R.S., Chan, F.M., Kwan, B.H. & Woo, J. (2010). An exploration of anticipatory grief in advanced cancer patients. Psycho-Oncology, 19, 693-700.


Dumont, I, Dumont, S. & Mongeau, S. (2008). End-of-life care and the grieving process: family caregivers who have experienced the loss of a terminal-phase cancer patient. Qualitative Health Research, 18 (8), 1049-1061.


Gillilard, G. & Fleming, S.V. (1998). A comparison of spousal anticipatory grief and conventional grief. Death Studies, 22 (6), 541-569.


Hebert, R.S., Prigerson, H.G., Schulz, R. & Arnold, R.M. (2006). Preparing caregivers for the death of a loved one: a theoretical framework and suggestions for future research. Journal of Palliative Medicine, 9 (5), 1164-1171.


Hebert, R.S., Schulz, R., Copeland, V.C. & Arnold, R.M. (2009). Preparing family caregivers for death and bereavement insights from caregivers of terminally ill patients. Journal of Pain and Symptom Management, 37 (1), 3-12.


Johansson, A.K. & Grimby, A. (2012). Anticipatory grief among close relatives of patients in hospice and palliative wards.  American Journal of Hospice and Palliative Medicine, 29 (2), 134-138.


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