It will be a year August 7 that Donna, my wife of 29+ years, passed away at MJHS Hospice in NYC. It was somewhat of a fast process from her admission on July 11 to have a thoracentesis performed which did not work to being moved to hospice July 18th. This past year has been one of discovery and extreme emotions ranging from ideation to joy in knowing that I have learned so much both during our marriage to the time following her death. But from the time of her dx 2 1/2 years earlier we both knew this story did not have a happy ending. Both of us work in an allied medical area so we are not afraid of physicians or medicine. So we marched head first into this hell and were blessed to have an oncologist who was clinically brilliant but understood our humanity. He guided us to Aug 7 with dignity and strength. 

That being said and Donna and I being who we were, a kind of take no prisoners people there was never an outright discussion of palliation until July 15 and it was extremely emotional and the uptake was poor. And hospice was like a pickup game of basketball. We learned as we went. Again we were blessed because karpus 4 and MJHS were clinically superior and I took charge of her care. So in 20/20 hindsight it was an amazingly supportive and caring experience for BOTH of us. And as an aside anyone who I've met who has been in hospice has felt blessed by the experience. 

 My question to anyone reading this is: Do you wish you had had a discussion about palliation and hospice sooner? Would it have improved your experience? 

Dear Mark99

First of all, my condolences on the passing of your wife. I have not had an experience like yours but I am a volunteer in a palliative care ward and coincidentally have a background in medical related research. So for what it's worth, here's my opinion. I think you should have no regrets about the path you pursued. After all, you did all you could to stave off the disease and were guided by a sympathetic oncologist. If all that didn't happen THEN you'd have cause to regret (yet not necessarily justified.) And if your hospice experience was ultimately amazing it's hard to see how had it been smoother it would have made much of a difference. It's easy to play the WHAT IF game especially considering the critical situation you just lived through. In your case it does no good. You did all you could to help your wife and she passed away peacefully. What more can a spouse do? From my hospice experience I see that the quality of time counts more than the quantity.

And Mark, thank you for sharing your experience with Merverlous. Best Wishes.

Tian: That is interesting what you see in my post: regrets. I have steadfastly refused to have any. Donna, who was the strongest woman I know and smartest lived her life by her rules. In the corporate world it did not serve her well but that is a story for another time. She for the first time in our marriage turned her cancer and care over to me, to someone else. That was amazing to see and an honor to share.

In my eulogy I said "Courage is not the absence of fear but the presence of dignity in the face of fear" Donna retained her dignity even when she lost her hair to whole brain radiation and the last weeks in hospice And any criticism I have of the hospice is with management and in take not clinical care, which was superior.  

Hi Mark99,

My thoughts are with you as you mourn your wife.

I lost my mom to cancer a few years ago. I helped mom realize her last wish, which was to die at home. We were able to get lots of palliative support from the healthcare system here. I agree with Cath1 who so eloquently, said the death of a loved is softened by the wonderful care by palliative care staff.

With regard to discussing palliation earlier in her diagnosis… I’m not sure, if I would have been open to learning about it at the time.

We did not realize how bad her prognosis was and the doctors told us they would treat with chemo to try to fight the disease. I did not know to ask about the staging of her disease but I now know that her case was palliative from the start. At the time, we were focused staying positive and fighting the disease, wanting her to beat it.

Like Donna, my mom’s progression from active treatment to palliative care was fairly swift. Her case worker nurse, realized very quickly that we were going to need palliative support so she gave us a pretty thorough briefing.  Prior to this briefing, I thought this nurse was abrasive and unfeeling based our past interactions. It was not until she had the palliative talk with my sister and I that she shared her own story. She had lost her husband in his early 40’s to cancer. Something she said to us that day about her experience resonated with us. She said if her husband wasn’t going to be able to live, she had to give him the best possible death through palliative care services. So, giving my mom the “best possible death” was our new mission.

Yes, that briefing was a touch overwhelming but if that nurse had tried to give it to me one or two months before, I think I would have told her off. At that time, I was in denial that my mom was “that” sick.