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Supporting Families struggling with understanding what is happening in a knowledgeable compassionate way

A look into the loss of a loved one in a very short time. The struggles and affects surrounding the lack of communication and knowledge

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In 2011 my mother was diagnosed with a GBM and flown to a larger hospital with the resources to treat her, and perform surgery to confirm what they found.  She was admitted and underwent surgery to remove the tumor and do a biopsy.  While waiting for surgery I noticed some changes to my Mom's normally pleasant behavior.  I voiced my concerns to multiple nurses and was brushed aside when I suggested my Mom had had a catheter placed and had not had a UA to check for a UTI, which would explain her change in behavior.  2 days later they finally did a UA and confirmed that she did, in fact, have a UTI.  Upon receiving the results from the biopsy the nurse called my sister and I so my Mom could give us the news of the results.  She was very pleasant on the phone, and told us my Mom had good news for us.  After speaking with my Mom, we googled "stage 4 GBM", and were very upset to learn what it was, and that her news was not good news, but devastating news. We called the hospital back and explained to the nurse, who didn't seem to know what her results were or what a GBM was, that the happy phone call she had connected us with was anything but that, and that someone needed to explain to my Mom what her diagnosis meant. A second CT a week after surgery revealed aggressive regrowth of the tumor and her prognosis was much more grim. After the surgery the doctors were talking about treatment and possible life (maybe a year), and after the second CT they said treatment was still an option, but that she was not expected to have a positive outcome (this was not reflected in the Doctors notes) so we declined chemo and radiation, opting for quality of life.  My Mom became paralyzed from the surgery, with the hope that her feeling and mobility would return.  She was transferred to an affiliated rehab center to help her regain mobility.  PT was not performed daily as we had been told. The staff made my Mom fearful to eat anything that might raise her blood sugar, because she was placed on a medication that could make her temporarily diabetic while taking it, so she wouldn't eat anything. She didn't like the diabetic food, and given her prognosis, we were at a loss as to the benefit of restricting her diet.  The fear extended to the staff worrying my Mom about coming home and allowing us to care for her, as we had discussed when we completed her Living Will, Trust and POA, in case anything ever happened to her.  She was not able to move herself and required turning, they did not turn her, the aid came in at the end of the shift and signed the rounding sheet without having been in the room to check on her all day, we had stayed at her bedside all day so she wouldn't be alone. They made her feel as though she would be too much of a burden and should stay in the facility to ensure she was cared for, mind you this facility was 6 hours from her home and she hated hospitals.  After fighting with the facility to release her, we brought her home, where she was under the care of her primary doctor.  I took a LOA to care for her and could see changes in her mentation and strength almost daily.  The doctor was amazing and made house visits to check on her, but was unable to confirm my fears of her changes, up until the last few days, she kept telling me "she could pull out of this" I don't know why it was so hard for her to confirm what I could see happening, but it made it very, very, hard for me as her caregiver to stay strong knowing the decisions I had made were the right ones.  I couldn't find comfort or closure because no one would accept what I could see as I cared for her and confirm her decline with me.  It was the most difficult experience of my life.  My Mother's tumor was discovered May 27 2011 and she passed away July 11 2011.

There were so many times I doubted the choices I had made for my Mom while she was unable to make them for herself.  Had I acted too hastily? Had I not given my Mom the best chance at life by not choosing chemo and radiation? She would have had to stay in a hospital for treatment because her mobility did not returned.  Did I really do enough research to understand what her cancer was?

In the end her tumor grew so quickly the pressure caused headaches and confusion, I couldn't turn to my Mom for conformation of her wishes, or closure.



What is a provocation or insight that might inspire others during this challenge?

I would hope that sharing my experience would give some insight into what it is like, as a loved one, trying to make the best choices while meeting indecision and lack of support by medical staff.

Tell us about your work experience:

I have worked in healthcare for the last 16 years in various settings; Nursing Home, Medical Care Unit, Surgical Care Unit, and ICU.

7 comments

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Photo of OpenIDEO

Hi Melanie, thank you for the great post. It'd be great to add an image to your post? Images help grab attention and tell a story. You should be able to use the Edit Contribution button on the top of your post and follow the instructions to add images from there. Looking forward to seeing more of your inspiring insights on OpenIDEO.

Photo of Melanie

I will see if I can upload one  :)

Photo of Christal Smith

Melanie, 
Great heart-felt writing! I'm working with Compassion & Choices on a new program to empower patients and doctors to communicate more clearly about disease and treatment. Would love to connect with you on this issue. Christal Smith   Csmith@compassionandchoices.org 

Photo of James Takayesu

Melanie thank you for sharing this vivid account of such a painful loss.  Your account is not uncommon unfortunately. Conversations about goals of care are often left to the margins of medical care and diseases with rapid progression only worsen communication. We must bring these conversations into the center of care to truly care for patients in a holistic way. 

Photo of Melanie

I agree completely. 

Photo of Pearl Sequeira

Melanie - Thank you for sharing your account, and am sorry for your loss and the experience your family went through. Sadly, I share similar experiences with poor communication in critical moments. 

I have a question - I'm wondering if having a healthcare background helped you navigate the space better, and/or whether you faced negative behaviour when you questioned certain decisions? I ask this, because a few years ago I helped a family member with an illness.  I have both a research and healthcare background. My knowledge strength back fired for me, when I  questioned the physician about a side effect that could have easily been prevented, re: a treatment option.  

Photo of Melanie

I do believe that it did affect the way they responded to my concerns.  I know in my position, I see opinions formed about patient family members who have a medical background.  It is so easy to be overly critical when it's your own family member in the hospital.  After being brushed aside on my concerns I did make notes of the things the staff were doing incorrectly and turn it in to the supervisor.  I am not generally an unpleasant person, but it was very hard to feel like my concerns were not being heard and feel as though my background was creating a problem when it came to my Mom's care.  I felt the only way I could overcome the way they were treating me was to demonstrate my understanding through pointing out what they were doing wrong.  That is not a very good dynamic to have to have with the people caring for your family member...