Nancy Fergusson suffered a painful death from melanoma on January 7 of this year. The cancer had spread throughout her body, eventually reaching its final destination: her brain. Her last 10 days were spent in the hospital, with her treatment culminating in a palliative procedure called Whole Brain Radiation, which was performed to relieve her terrible headaches and nausea. The procedure was harrowing for both her and her husband George and it was stopped after two sessions. George is frank, but understanding, of the ways he believes her caregivers and the system failed them, and documented the last 10 days of Nancy’s life in this moving account.
George reached out to me after participating in Schwartz Center Rounds at Harold Alfond Cancer Care Center in Augusta, Maine. Rounds, as you may know, are offered at 186 healthcare facilities across the country and they’re a sacred space where caregivers from multiple disciplines can process the tough psychosocial issues that come up in their daily work. George was invited to present to the cancer center staff his and Nancy’s experience of care. The hospital prepped staff for his presentation by distributing his story about her death. The piece brings up so many important questions, including:
- When does even palliative treatment become too painful to endure, and how can patients and families be empowered to refuse it?
- When is it time for caregivers to articulate that a patient is going to die imminently? Whose role is it to deliver this news?
- How can caregivers be sure to look beyond the disease and really see the patient, factoring in his/her values, belief system and feelings into the treatment plan?
When George and I spoke recently, he told me that he felt “elated” after presenting at Rounds. “I was on Cloud 9 and I think a lot of people were,” he shared. “I felt that my feelings had been validated and people were truly appreciative of what I had done by going public, sharing my feelings, being open and vulnerable. We talked about not only what had gone wrong, but what had been done right as well. The Rounds gave me an opportunity to say ‘thank you’ to the people who had given so much of themselves caring for us. Everyone came away a winner.”
Let me know if George’s story resonates with you.
Posts
.png)
10 comments:
George, you're a hell of a guy :)
He sure is :)
Thanks George.
Nancy would have wanted other people to learn about and benefit from her experience, that's the kind of person she was. That said, I don't think she'd appreciate the notoriety. Sorry honey, you can't have one without the other.
It hasn't been easy sharing so openly about something so personal and painful as my wife's untimely death. At the same time it has been strangely liberating. It's hard to explain. Providing feedback to the hospital staff has been extremely important and rewarding for me. That they have been receptive to what I had to say and have been willing to look critically at themselves and their procedures with an eye towards changing what isn't working is a tribute to them and their dedication to their jobs. To a person they want to be better caregivers; that our experience can help them work towards that goal is an honor. I'm am humbled by where this has taken me; Nancy would be pleased.
George, you already know that I think you are an amazing person and I'm glad you shared your and Nancy's story so openly. Remember, one day at a time!! Much love and respect!!
This is an amazing account, shared unflinchingly. I think you've brought dignity to your wife's last big journey of life.
I work at Children's Hospital Boston and we have the Pediatric Advanced Care Team here to help families deal with the deaths of their terminally ill children. Joanne Wolf, an amazing physician, heads up the program, and recently wrote a post for our blog about how many parents consider hastening the deaths of their children so they (the children) can avoid many of the things you write about here. PACT tries to maximize the time that the parents and kids have left together - quality vs. quantity, as you said in your story.
Here's the link if you're interested: http://childrenshospitalblog.org/parents-consider-hastening-death-for-terminally-ill-children/.
Thanks again for sharing.
Matt Cyr
Matt,
The Schwartz Center is a big fan of PACT, which was one of five finalists for our Schwartz Center Compassionate Caregiver award in 2009. It is an amazing group of people who do amazing work. Thanks for bringing it to our readers' attention.
Matt,
Thank you for your comment. There was plenty of dignity in Nancy's death but it wasn't obvious to most people present for it. It was even hard for me to see while I was caught up in it. Only afterward when it was all over.. I did try to capture it in what I wrote. I'm glad it made it across to you.
Also, thank you for posting your link, which I've just finished reading. It was disturbing! There is something wrong with a system that puts parents in a position where they feel they need to "hasten" their child's death. How that must make them feel! I suppose one could argue that my decision to halt Nancy's radiation treatments was an attempt to "hasten" her death but I certainly didn't see it that way and nobody dared suggest to me that that is what I was doing. If anyone hastened Nancy's death it was Nancy herself.
What people don't seem to understand is that Hospice has more to offer the surviving family members than it has to offer the dying one and the survivors are best treated early. I can't imagine a situation where hospice is brought in too soon. It takes time to make contact with and develop emotionally viable relationships with grieving people. The time to start is long before the person they're grieving dies. Unfortunately, Hospice is rarely called in until the doctors have given up by which time the surviving family members are already in shock.
Your PACT program sounds heaven sent. Thank you again for bring it to my attention, and keep up the good work. I'll reread that post. I may have more comments.
Recently my grandmother passed away in a hospice center in Colorado. My entire family and I were so impressed with the staff of the hospice center- they made it so much easier for us to be with her, I can't think of one way that the experience there could have been better, or more helpful. I wish we had been recommended to the center sooner.
Aurora, once Hospice is brought on board, things go better. It's hard to imagine Hospice being called in too soon. The problem, more often than not, is that for whatever reason, Hospice isn't contacted soon enough. It takes time for Hospice workers to establish relationships with the patient and family members. The more time they have, the better.
I'm glad you had a good experience.
Post a Comment