By Vincent J. Mandola, MD
March 25, 2015 was a day I will never forget. It was the day I watched my mother take her last breath. She was 56 years old and had battled cancer for two years. It was a surreal time stepping into the unknown for my close family, but it’s not the moment of her passing I want to write about here. It is the days leading up to that moment, as this experience has given me a new outlook on end-of-life care.
After surgery and nearly a year and a half of chemotherapy, mom was determined to have a couple of decent weeks before what she knew was inevitable. She had just been discharged from the hospital for uncontrolled pain and sent home under hospice care.
Her biggest fear during this time was pain, and she made her wishes known to her family and her medical team; she wanted to avoid as much pain as possible. Doctors, nurses, and hospice representatives assured her she would be kept comfortable.
On the day we arrived home, a hospice nurse met us at the house and we began reviewing medications. Although we had some sublingual pain medications, many were to be taken orally.
I asked, “What can we do once she cannot tolerate swallowing pills for her pain?” I was frustrated that a specialized group such as hospice did not have a satisfactory answer. They had a few alternatives, such as a patch, but nothing ready to go and it was obvious that when this happened, mom’s pain would be out of control for several hours. This precise event happened to her two times, creating two hospital admissions for IV pain medication, each time taking days to achieve adequate control.
This process dragged on for months and was excruciating for my family, most of all for mom. No matter what she or my family said, the hospice team implemented their standard of care, which was first and foremost to not overdose.
Mom begged during these times to be “knocked out,” and although I did not want her medically sedated so that I couldn’t speak to her, it is truly what she wanted. She made this known even before these episodes occurred. Therefore, this is what the family wanted for her as well.
Through this process, I learned that medical sedation is not an option. The limited options opened my eyes to what people are forced to endure at the end of life. As physicians, we took an oath to first do no harm. In my opinion, this is harm—harm for the patient and harm for the family. During these times, medicine should be, more than ever, patient driven. It should be up to the patient and not us to define “harm.”
Two days before mom’s passing we were still struggling to control her pain. Encephalopathy had likely settled in, so the physician wanted to decrease the pain medication to determine the cause. Knowing mom’s wishes, the thought of her waking up in pain was not an option for the family. She seemed somewhat comfortable for the first time in a long time. The hospice physician refused to grant the patient and family’s wishes because she feared the medication might cause death, which was going to happen in days regardless. We ended up compromising, but why?
With all of the capabilities of modern medicine, why do patients still have to suffer at the end of life? To me, this current practice is not only wrong, but inhumane.
At the end of life, a patient’s wishes should simply be well understood, documented, and fulfilled. This will also help decrease hospital admissions. I believe home subcutaneous drips should be readily available with a well-educated family or caretaker and should be able to be started when necessary. IV medications should be easily available for home use by a well-educated medical provider. When in an inpatient unit, sedation for a previously understood and agreed reason should be available if the patient wishes. Anesthesiologists should be available and utilized for palliative care. The fear of lawsuit should be limited, as this time of a patient’s life should be treated differently.
During the last days, breaths get further apart as the family sits and listens, waiting to see if there is a next one. Adrenaline is pumping and sleep is nearly impossible. You are concerned for your loved one and for your other family members gathered together. You all witness the mottling, continued apnea and gasping, and your loved one’s blood pressure falling. With our current practice, those at the end of life and the family are forced to go through this horrendous process.
I do not expect everyone to want these same things and I don’t expect those who have not had to watch a loved one go through this to understand. I believe no one standard practice fits, but rather that physicians should adopt the practice of allowing those suffering to drive the care. After this life experience, I now know how I wish to pass when my time comes. And I will say that if our practices in Texas do not change, I already know my wishes will not be fulfilled.
Vincent Mandola, MD, is the family medicine chief resident at Houston Methodist Hospital.