As palliative care providers, we spend our careers talking about end-of-life care and helping families make difficult choices about life and death. Have you ever been on the other side of the conversation, answering questions and making decisions for your own loved ones? I have cared for thousands of patients at the end of life, but recently I’ve been on the other side of that conversation – twice.
My first conversation began with “Momma,” my wife’s 91-year-old paternal grandmother. Her decline started with a kidney stone, which then led to urinary tract infections and tremendous pain. Momma made the decision to have lithotripsy. During the procedure, she had respiratory distress and required intubation. Her heart was not strong enough to tolerate this “routine” procedure. She developed right-sided heart failure and pulmonary edema. Doctors were able to extubate her; however, she continued to have more respiratory distress. She was not doing well. They placed her on Bi-pap but she did not tolerate this. She was in the hospital, agitated, dyspneic, and did not want to be re-intubated.
So now what? Our family had to begin those difficult discussions. Do we continue to push aggressive care? Momma told the family she was tired and ready to die. It was hard for our family to acknowledge what this meant even knowing her wishes. Added to that, it was two weeks before Christmas and my family lived six hours away from Momma. We decided my wife and our three-year-old daughter would travel to Georgia while I stayed home to work. I wanted my wife to be there for the conversation in person and to see her grandmother, as I knew this might be her final days on earth. After discussing options, the family agreed to inpatient hospice care.
I was too involved with work and like many times before chose work over family. My wife was at Momma’s bedside for less than 24 hours when she called me telling me that Momma was asking for me, “The Doctor.” I pulled myself away from work in the middle of the day and headed to Georgia.
I was now being asked medical questions as well as “what about Christmas?”, “what do we tell the great-grandchildren?”, and “is this the right thing to do?” I did not have answers. I had memories and emotions for this woman I loved; I did not want to think, “Momma is dying.”
All the signs were there; it was her time to die. The family began the journey with Momma. I have worked in three different inpatient hospice facilities. It’s easier for me to study the staff, their workflow, their EMR, their census, their medical director – this is what I know. My wife reminded me that this time, I was there for Momma and our family. I was not “The Doctor” now; I was family.
Staff managed Momma’s symptoms quickly and she had two good days talking and interacting. We had made the right choice, albeit not an easy one. Long days and nights at the hospice home wear a family down. Hospice staff participate in these experiences daily. We think how hard it must be for the patients and families. When you are on the other side, you feel the sorrow and you learn a lot about the value of hospice care.
Momma died peacefully four days later. We returned home to North Carolina, only to receive a phone call that “Granny” was in the hospital. Granny was my wife’s 78-year-old maternal grandmother. She had Alzheimer’s disease, had fallen at home, and had developed altered mental status. She was not eating, she had a UTI, and a CT scan showed a small hemorrhage in the frontal lobe. Granny was agitated, not eating, and declining. So now what?
Just three weeks earlier we had lost Momma. Now our family was deciding on inpatient hospice for Granny.
My wife, daughter, and I packed the car and headed for Florida. I took the time from work, but I was still on call and was on the phone, giving orders the entire trip. Once again, it was easier for me to do my work as a hospice physician than confront what I had no control over. We were losing both our grandmothers within three weeks.
As we arrived in the middle of the night, we received a call letting us know Granny died. She had declined quickly. That was truly a blessing. After all the heartbreak and tears, we went to Granny’s house and celebrated her life. This is what she would have wanted.
Those two experiences remind me how hard end-of-life conversations are for families. We as palliative care providers need to remember it is different when there are memories and emotions involved. No matter how informed our families are, these decisions are not easy. And, it’s hard being on the other side. We are no longer medical professionals, we are family. All our medical training leaves our mind and we become an emotional basket case. We find it hard to think straight or make rational decisions. It’s difficult living with the decisions and through those choices.
I’m 40 years old, my parents are approaching retirement, and my grandparents are dying. I have friends who are struggling with acute and chronic illnesses. All of this has made me a better hospice and palliative care physician and I’m glad I can reflect on my training and life experiences to help my patients and families. I make the conversations personal and emotional. I have more empathy during family meetings. I think this adds a new dimension to the work I do, the work I’m proud to do. These two experiences brought our family closer together and I’m grateful I could help in the decision-making process. My family saw firsthand how our jobs as hospice and palliative care providers are intensely emotional. We all need to realize the impact we have on the families we care for, how a well-trained hospice and palliative care staff can have an impact on a family.
During our trip home from Florida, my wife looked at me and asked, “How do you do this day after day? I am proud of you and now understand your job even more and how rewarding it must be.”
Christopher M. Thompson, MD, HMDC, assisted in developing the palliative medicine programs at two hospitals prior to joining Transitions LifeCare as Medical Director for Transitions Kids, Transitions LifeCare’s pediatric hospice program. Dr. Thompson is board certified in Family Medicine. After completing his Fellowship, Dr. Thompson became board certified in Hospice and Palliative Medicine with the added qualification of Hospice Medical Director Certification.
This article originally was published in Winter 2017 NewsLine.