How do you overcome denial of death?

A fellow caregiver asked...

How do you deal with death and denial? I have a cousin who is receiving hospice at my home. In November 2006 she was diagnosed with stage IV breast cancer with metastasis. She has gone through chemo off and on since then and this past March the cancer was found in her bone marrow which was causing her to need frequent blood transfusions. Throughout these two and a half years she has been in the hospital for dehydration and other minor problems at least once every three months or so it seems. On May 21st she was admitted to the hospital again where it was found that her central line had gotten infected and caused a huge mass of a fungal infection on her tricuspid valve, renal and liver failure also. Without taking her line out there would be no chance of recovery but the surgeons here in our little town were unwilling to do the surgery due to the severity of her medical problems and insufficient medical staff here. I had power of attorney since her first hospitalization and so it was left to me and her brother to decide what was to be done. We chose to allow her to go peacefully and without pain.

Within the next couple of days we put her on hospice and lo and behold she woke up and slowly started drinking fluids. Her oncologist spoke with her and explained that she was not coming out of this and suggested she come home with me which is what we wanted. She is home now and every day getting stronger - not medically better but stronger and that is what she sees. She never wanted to deal with the diagnosis therefore I have taken care of her and dealt with all her medical appointments. My question is what do I tell her when she says, "See, I am getting stronger and eating 2-3 good meals a day?" She was hardly able to eat due to cancer prior to this hospitalization. And now she sees herself as getting better and will be able to go home soon. I have reminded her a few times the extent of her illness but it's like she didn't hear or chooses not to hear. Since our decision was made the only medications she's gotten are pain killers, no antibiotics, chemo or other necessary drugs to counter her infections. Her other diagnoses are hypertension, anemia and depression.

Expert Answer

Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone with Cancer," "The Journey of Grief," "Handbook on Hospice and Palliative Care," and other titles on cancer diagnosis and end of life. She speaks regularly at cancer research and support functions, including PANCAN and Cancer Survivor's Network. She is a former member of the Executive Committee of the CSN at St. Joseph's Hospital of Atlanta and the Georgia Chapter of the Lymphoma Research Foundation.

I confirmed with a surgical oncologist about an infected central line, and you are right. This is a "pre-terminal" event and she will not recover from this without removal of the line. But commonly, cancer patients will see a short improvement in health that preceeds death; one chaplain I know says it's a boost of energy to complete the things you need to tie up before you leave.

In response to your concern about what to say when she is thrilled she can eat: Feed her when she's hungry and enjoy it. Consider using her extra energy and mental capacity to take care of last wishes (you can call them something else) -- having her concentrate on "to do's" could be rewarding and productive at the same time. Some ideas might be to organize pictures or old letters, or write new ones. Plan a small gathering to celebrate an event, or a little trip.

But let's get back to the subject of denial. After years of caregiving to your cousin, you have established communications patterns that have worked in the past but are breaking down with these unprecidented happenings. I applaud you for still searching for ways to help her. Because this is all new to the two of you, it may be time to try something new in dealing with her denial about dying.

The work of two geriatric and palliative care professionals can help: Dr. Elisabeth Kubler-Ross and Dr. Joanne Lynn. Kubler-Ross's famous work, "On Death and Dying," outlines the five stages that she's identified during multiple years of research, one of which is Denial. Take a look at this website to read about the stages.

This will help you to understand her grief, as well as your own anticipatory grief. You're not immune from feelings, even though you've had to set yours aside before.

Dr. Lynn's work "Handbook for Mortals" is a beautiful guide to helping others toward end of life.  You will find phrasing in both books that you can apply to your own situation, including questions and answers. You can tailor their recommendations to your needs. Here's a link .

It certainly sounds like your cousin has a wonderful caregiver in you.  One last word of advice: Do not worry if you are not "succeeding" in communicating with her; you have done your job well over these years and she will understand in her own way, in her own time.