Lack of patient and family involvement in end-of-life care planning: A road too often traveled
January 14, 2015: The day my dad, age 69, was diagnosed with Stage IV terminal cancer. I was at my new job when I got the call from my aunt. Someone might as well have kicked me in the stomach.
January 19th: We meet with my dad’s oncologist for the first time where she asks questions about his work history and personal health history. She then, matter-of-factly, tells us that he would begin chemotherapy treatment which might delay the rapid progress of the cancer and possibly extend his life or give him a better quality of life for the time he did have left. My mom, dad, his sister and I are dumbfounded and nod our heads. I’m thinking to myself but didn’t want to “butt in” and irritate my dad by asking, “What if he doesn’t want to do chemo? Are there other options we can talk about?”
No such options, such as palliative care or hospice were even brought up.
February 9th: The day chemotherapy treatments (the most aggressive kind) began.
The month of March: As an only child, I put my career on hold and spent as much time with my dad (and mom) as possible and quickly realized that I had become a parent to my parents as my mom was devastated and confused and my dad was too sick to want to deal with much of anything, except sleeping.
April: 8th: I left my parents’ house and was horrified at how rapidly my dad’s condition was deteriorating. I called his oncologist to ask her what the point of putting him through an MRI the next week was. No matter what they found, they really couldn’t help him in his condition, she admitted.
I cancelled the MRI and my dad thanked me and cried from relief when I told him he didn’t have to go.
April 18th: The day my mom’s sister called me over to my parents’ house as my dad couldn’t get out of bed and my mom didn’t know what we should do. I panic the entire 25 minute drive not knowing what to expect. Dad is writhing in pain and so weak he can’t get out of bed. I make the decision to call 911 and have him transported to the hospital. He is admitted and we are told this is, essentially, the end of the road for him.
April 26th: After a few days of hospice care and us getting used to the idea of having to let him go, Dad passes away. I am relieved because I know he’s not suffering any longer.
April 27th – 29th: My grief is directed at putting together a slideshow and a program for Dad’s service.
April 30th: I interview for, and am offered, the Community Liaison position with Colorado Visiting Nurse Association. I was relieved to have a place to positively focus my grief after my dad’s passing.
May 1st – My dad’s memorial service. Heartbreaking to see my oldest son, who had written a tribute to read, break down and not be able to share his words. My family asks how I can be so strong and worry that I’m not crying. I explain to them that I had been grieving for months and was actually relieved that he was no longer suffering.
June 9th: My birthday. For some reason, I kept thinking dad would be calling me to sing to me in his goofy way.
June 15th: I attended networking meeting for work and learned about the Aid & Assist benefit for veterans and their widows to use for home care options. I wish I had known about that option for my dad to get home care while he was sick! Maybe then mom and I could have just spent our time acting as his wife and daughter instead of his caretakers (who didn’t really know what we were doing)! I am angry that we were given no information from anyone in the healthcare system about this or other services available to him.
June 21st: My first Father’s Day without my dad. Waves of sadness and anger caught me off guard.
It suddenly dawns on me that none of his test results were shown to us at any point along Dad’s nightmarish journey. I decided that I would take action and file a complaint to the facility where my dad received his care because I didn’t want anyone else to be treated the way he had.
July: I receive a call asking if I would like the healthcare facility to launch an internal investigation. I am relieved that there is some action being taken.
August: I hear back from the facility that based on the results of the internal investigation, the doctor who treated my Dad is no longer employed there. It was not my intention to get anyone fired but sometimes positive change comes from dire outcomes. I pray for the doctor that this was a positive learning experience that will lead to better results with their future patients.
Lesson Learned: The best way to improve our healthcare system is to stand up and advocate for your healthcare! Don’t depend on your doctors to provide you with options as they often do not know. Demand to have a meeting with a medical social worker if you’re diagnosed with a chronic or terminal illness. Take advantage of any and all resources available to make life easier for you and your family. You don’t have to go it alone!
October 12th: What would have been my dad’s 70th birthday and my parents’ 46th wedding anniversary. Probably one of the hardest days we’ve had since he passed.
Christmas: My mom, aunt and I really wanted to skip the whole holiday season but I made myself keep our traditions for my kids. I kept my mom busy and had her stay with us so she doesn’t wake up to an empty house on Christmas morning.
February 11, 2016: My mom’s birthday. We kept her busy by celebrating with a girls’ lunch and a family dinner. It’s was hard not to think about what we were going through last year at this time, but that seemed to preoccupy our thoughts.
April 26th, 2016: One year anniversary of my dad’s passing. My anger at the situation has turned into a productive mission to help others. I hope my dad is helping me carry the torch to positively affect others’ lives. I miss him just as much as I did a year ago.
Melissa Jensen is a working mother of three kids and an only child whose personal mission is to educate adult children and senior citizens about how to ensure they get the home care benefits they are entitled to during a chronic or terminal illness. She now works as a Community Liaison for the Colorado Visiting Nurse Association