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Survivorship

Permission to Grieve

Patients with cancer are too often made to feel they need permission to experience the emotions that accompany a cancer diagnosis. Barbara Ritsema draws on her years of experience as a nurse to explain the stages of grief and offers tips for how to talk about cancer and how to help people diagnosed with cancer through the grieving process.
February 2019 Vol 5 No 1
Barbara Ritsema, RN, MS
Breast Cancer Survivor
Boise, Idaho
Ella and I had not met or spoken with each other for several months. When we saw each other at the library, I noticed that she looked sad and pale. In the past, Ella had consistently seemed energetic and happy. As we talked, I asked her how she “really was feeling?” With a quiver in her voice and slumped shoulders, she informed me of her recent cancer diagnosis. We arranged to have lunch later that week, so we could talk more.

Your Feelings Are Okay

During our lunch, Ella told me more details about her diagnosis and upcoming treatment. I was surprised to hear that she was initially informed of the biopsy results via an e-mail from her doctor’s office. The message had stated that the biopsy showed that she had cancer, and she should make an appointment to discuss future surgery.

During the appointment a week later, the surgeon told Ella in a matter-of-fact manner that he was not sure how extensive the cancer was, but it was likely that with surgery to remove the affected part of the breast and follow-up treatment, she would be just fine. When we were having our lunch conversation, Ella was waiting for the excisional surgery. She feared that the surgery would reveal invasive cancer, and that the follow-up treatment would be harsh and extensive.

“I feel like I am living in a nightmare,” Ella said. “How can this be happening to me, when I always took such good care of myself? I ate the right foods, and exercised. What did I do wrong? I’m not sure if I can deal with what is ahead.”

Grieving Is a Normal Process

Ella was grieving, and none of her healthcare professionals had given her a clue that the grief process is normal when a person is diagnosed with cancer. In fact, every major life change stimulates a type of grieving. The greater the impact of the change, the more intense the grieving process will be.

In his classic book on grieving, titled Good Grief, Granger Westberg provides many examples of how the grief process is an aspect of life that too often is ignored by the person working through the process, as well as by relatives, friends, colleagues, and caregivers.1

His examples illustrate the concepts that grief is individual, so there is no magic solution, but many strategies are available that can be helpful, and that even positive changes in life can stimulate a need for coping with change, because any change means a move from one thing to another, meaning a loss. He provides the following formula to express this process:

Change = Loss = Grief and can lead to Growth.

Ella was not fortunate to have a patient navigator available to assist her by answering questions about her initial diagnosis and future procedures. She felt very alone. Ella’s relatives and friends had been avoiding her and any conversation about her health needs.

As a nurse and a cancer survivor myself, I became her advocate and guide through the physical and emotional aspects of her care. Together we developed questions for her to ask her healthcare providers, and identified where she was in the grief process.

Ella was relieved to finally have been given permission to grieve, and realized that her emotions could lead to appropriate actions. She was assured that her response to a cancer diagnosis was normal.

The 5 Phases of Grief

Years ago, Swiss psychiatrist Elisabeth Kübler-Ross and Joseph Bayly conducted workshops together about the experience of grief related to when a person is dying, or when a loved one has died.

Ross’s initial 10 stages of grief were later modified to the 5 stages that apply to any major loss, including:

  1. Denial or shock and disbelief
  2. Anger
  3. Bargaining
  4. Guilt or depression
  5. Acceptance and hope.

The 5 stages of grief can be summarized with the following phrases:

  • Denial or shock and disbelief. “No! Not me! This cannot be happening to me.”
  • Anger. “Why me? What did I do to deserve this? This is not fair!”
  • Bargaining. “I will do…I will be a better person, if only.”
  • Guilt and/or depression. “What could I have done to prevent this? I don’t think I can get through this.” A person may also have new fears or feel that no one understands what they are experiencing.
  • Acceptance and hope. “I can have a happy life and a good future. I can move on with my life and plan for the future. I can handle this experience.”

Each person doesn’t always follow the same sequence of these stages, and some people often cycle back to an earlier stage.

Who Should Address Your Grief?

Whose role is it to give permission to patients to grieve their health status before their cancer diagnosis? Who among your healthcare team should assess your personal needs in this area? Knowing that the grief process applies to any losses in life, it is interesting how often grief is not addressed by healthcare providers.

Even major cancer treatment centers often do not routinely address the common phases of grief that patients and family members may experience, whether the diagnosis does or does not indicate a terminal condition.

Patients with cancer often benefit from the support of family and friends, and many do not need the assistance of a social worker or chaplain. But it is important that patients, their family members, and friends realize that their feelings are not unusual, and that they can feel free to ask for help in working through the emotional roller coaster of grief.

In the past, I had the privilege of working on a project with Joseph and Mary Lou Bayly. Three of their children died at a young age from serious illnesses, including cancer. When they wrote and conducted workshops about grief and loss, they emphasized the need to consider the grief needs of the entire family, regardless of the patients’ ages, throughout the illness and not just when a family member dies.

Being able to handle the big losses in life begins with developing ways in oneself and in the family members to deal with the daily and weekly small losses.

Key Points

  • No patient should be informed of a cancer diagnosis via an e-mail from the doctor’s office
  • Grief is a normal process of life, and patients with cancer must be given permission to grieve
  • The 5 stages of grief include denial or shock and disbelief, anger, bargaining, guilt or depression, acceptance and hope
  • Even major cancer centers often don’t address the common phases of grief that patients and family members experience
  • Being able to handle the big losses in life begins with finding ways to deal with common, small losses

Online Resources

Many websites designed to assist patients with cancer and their families address adult grief, suggesting that the process is most applicable when someone is dying, or has died.

Websites that provide information about children’s grief are better at addressing the type of grief that occurs with developmental challenges, tragedies, and common childhood losses.

The Canadian Cancer Society’s website has many helpful sections, such as feelings and cancer, talking about cancer, living with cancer, life after cancer, and helping someone with cancer. The divisions within each of these sections answer many questions that are common to patients with cancer. This is one of the best sites I have found, and I recommend it as a reliable resource.

Reference

  1. Westberg, Granger. Good Grief: A Constructive Approach to the Problem of Loss. Augsburg Fortress Publishers; Philadelphia, PA:1997.

Patient Resources

Canadian Cancer Society
www.cancer.ca/en/cancer-information/cancer-journey/recently-diagnosed/?region=on

CancerCare
“Grief and Cancer Care: Ways to Cope with Loss”
https://share.upmc.com/2016/10/grief-and-cancer-diagnosis.

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