When to tell the patient the truth

bejuce · 01-18-2013, 11:03 AM

Dear beloved HER-2ers,

I'm dealing with a difficult situation at home and I need your input on how I should proceed. My father, who was diagnosed with bladder cancer in 1994 that recurred in 2001 and 2011, has in a period of what it seems to be a few weeks, been diagnosed with mets to his liver and peritonium. He was admitted to the hospital this week after his first chemo (Gemzar/Carboplatin) last week with some rectal bleeding.

Doctors did an endoscopy, blood work, and colonoscopy and determined that he has mets in his colon as well. We're dealing with a very, very aggressive cancer here.

My mom and sister have asked the doctor not to tell him about this latest development. I am stunned at this as my father and sister are both doctors (they live in Brazil) and knowing my father, I'm sure he would like to find out the truth from his doctor and participate in his care decisions. Having gone through my cancer experience here, I've learned to be my own advocate and always ask the doctors questions and work with them to identify the best course of action. My sister and mom want to withhold all information from my dad at this point, thinking that this is better for his state of mind. I think there are cultural and social issues at play here, and I feel powerless over this. I told my mom that I didn't agree with their decision, but given that I'm here thousands of miles away, there's not much I can do.

I've asked my mom to talk to the doctors about radiation, but she thinks we shouldn't be asking or telling the doctors anything as we're not doctors and don't know any better.

Has anyone dealt with anything like this before? If part of your family is pushing to withhold information from the patient, what do you do?? I feel so powerless that I'm not there to act on his behalf....

Thanks!!!

Debbie L. · 01-18-2013, 12:34 PM

It must be so hard to be far away already, and then to have this issue on top of it all -- so sorry you're having to deal with it all.

Your question takes me back. WAY back, to nursing school days in the early '70s. At that time, it was standard of care not to tell patients when they were "terminal" (that was the word used then, you hear it less now, probably because it's such a vague term). There would be heated debates, among family members, among caregivers, etc -- about what was best.

Over time, research and level heads prevailed. First of all, it was proved that the patient almost always knew the truth and was just playing along because they thought it would be easier for their loved ones if they did. The loved ones perhaps rationalized that they were protecting the patient -- but more often, they were really acting more out of their own fear and denial of the truth. Elizabeth Kubler-Ross and others were instrumental (both with their writings and teaching, and with evidence) in helping people overcome the fear and engage in open and healing communication about serious illness and death.

None of which helps you, right now. What do you know about the facility where your father is receiving care? Do they have services like hospice or palliative care? Would you feel comfortable talking to your father's provider, and suggesting that hospice, palliative care, or a social worker, speak with the (local) family? Not necessarily at first with your father directly -- but with your mom and sister, who are the ones with the problem (imho). Sometimes they are just so scared that they are frozen, and need only a little bit of support/nudging to realize the best moves.

Good luck, keep us posted. Lots of good thoughts coming your way.

Debbie Laxague

StephN · 01-18-2013, 01:17 PM

Such a heartbreaking situation! Families can be difficult. I had to deal with my mother and one sister who were of the "in denial" mode when my father had very little time left. It was not so much telling my father, but getting my mother to place dad on hospice and allow him to pass away peacefully. Dad contracted an infection which short circuited finalizing all that.

You father must have conversations with his doctors. I can't imagine he would not ask pointed questions. There must be times when your family is not in the hospital when the doctors make rounds. Are you able to speak to your father just to see what he actually does know?

If he is unable to tolerate further chemo, he will understand what that means. You have my sympathy, and hope that this will resolve in a way that does not split your family.

bejuce · 01-18-2013, 01:34 PM

Thank you so much for your quick response. I did speak to my father this morning who told me that the colonoscopy was fine. My mom and sister basically asked the doctor not to tell him. The doctor did not tell my father the truth. This bothers me tremendously, as I want to trust doctors to always be truthful to the patient. Even if my dad is alone with the doctor, the doctor is lying to his face.

BTW, my mom told me today that my grandpa (her dad) died without even knowing he had cancer. He died of stomach cancer without any idea of what he had. I'm sure there is a cultural issue here, as in Brazil, sadly as it is, hearing the word cancer makes most people shriek in terror. In fact, I grew up hearing my mom say that "everything in the world has a solution, except for that disease". Argh!!!!!!!!!!!

I will avoid from now on making any treatment suggestions to my mom and sister and will instead talk directly to my dad. I'll ask him point blank if he wants to know the truth and what his prognosis is. I want the whole family to let him have time to say goodbye and to pass his values and thoughts to us one last time before avoiding the issue completely.

Thanks for your support,

Marcia

BonnieR · 01-18-2013, 04:42 PM

I find it interesting that you say your father is a doctor. Surely he has some incling of his situation. Particularly with his history. I wonder if he is putting on a "brave face" in a misguided attempt to protect the family. It is also interesting that doctor-to-doctor the sham is maintained. The elephant in the living room.....
Keep the faith.

roz123 · 01-18-2013, 08:24 PM

bejuce...im so sorry about your father. We have a similar situation happening in our family right now. A family member is also in the last stages of colon/spread to liver cancer. They have stopped all treatment yet he continues to ask when his next chemo will be. They have not told him that he can no longer tolerate chemo. The entire family (wife and kids) is in a complete state of denial...so much so that hospice should have been called much sooner as he is in a lot of pain . The doctors were also at fault because up to a few weeks ago they wanted to try another chemo even though his condition was worsening. I completely feel for them - they want to have hope, keep their father in state of hope yet they are not dealing with reality. I didn't offer any advice to them as it's not my place but I also wonder if they are taking away his chance to say his goodbyes, wishes etc...such a difficult situation

Joanne S · 01-18-2013, 10:51 PM

Oh Boy! I feel for you. I was in the same situation with my mom in the 90s. It was taboo to even say the word "cancer".... same as your family. I ended up asking the doctor to tell her, but to do it when my husband and I were present so I could hold her hand. With you being such a long distance, it's so much more difficult. Personally, I would hate it if my family knew that about me and held it from me. I think your approach may be best for your situation. Perhaps feeding bits of information at a time and depending on his reaction and willingness to know more, you'll then know how to procede. I hope you'll be able to talk to the doctor first, and I hope this goes as smooth as possible for you and your dad. In my prayers, Joanne

Joanne S · 01-18-2013, 10:56 PM

roz123, my heart goes out to you too! I'm sorry you and your family are going through this! Hope and prayers, Jo

starwishn2 · 01-19-2013, 12:33 AM

I am so sorry for your news about your father. I, too, have a similar story. I was with my mom when the doctor told her my dad had possibly 6 to 8 weeks left from cancer. My dad had stayed at home as he wasn't feeling well that day. My mom would not tell him. In fact, when his body started to shut down, she was trying to get him to take fiber pills. I believe that my dad "knew" in his own way what was happening. I was able to get her to finally agree to hospice. Is there any way you can convince your mother about hospice? Those nurses are so tender and caring. I don't know about Brazil but here they also have social workers to support the family - which turned out to be such a help for my mom.

You and your family will be in my thoughts.
Jeri