Quality of life: We say it, but do we mean it?

One of my most treasured stories as an ED physician belongs to a lovely couple who valued quality of life. It was a routine day in the ED when an elderly woman rolled through the ambulance doors on a cold, narrow stretcher, unaccompanied by family. She was placed in bed 5, which is where we met. She was frail and her memory was poor. The EMS run sheet reported “change in mental status” as the complaint. I was unable to get any history from her, so I completed my exam and wrote the standard orders for the complaint. One thing was apparent upon my exam: someone was taking extraordinary care of this woman.

As the labs started to come back, I discovered that she was in acute renal failure. Luckily, that is when her husband arrived and could fill in the blanks. His wife had metastatic cancer and he knew her days were numbered. We decided to do an ultrasound and found that she had complete urinary obstruction from a growing mass. As I sat next to her husband to give him this news, he told me about their life together.

He had met his wife when they were teenagers and had become good friends. They both went to college and got married in their mid-twenties to other people. Unfortunately, both their spouses had died at relatively young ages. He had spent 6 months caring for his first wife, who died from ovarian cancer. It was shortly after her death that they became reacquainted, fell in love and got married.

Then he told me about the wonderful life they had found together after losing their first loves. He considered her his second chance at happiness.

With the news of his second wife’s cancer, they vowed to live life until the very end. He knew the trajectory of this illness. He had already witnessed its toll once.

After the ultrasound report, decisions had to be made. My instinct as a clinician was to immediately formulate a plan of how we could reverse the obstruction, which would require admission and more procedures.

But he followed his own instincts. He was the strongest soul I had ever met. He took my hand and said “Dr. Kile, thank you, but we are done with hospitals. I want to take my wife home. That is what she would want. I promised her a good life — not necessarily a long one.” He asked that I arrange for an ambulance transport. He smiled at me as she rolled out through the ambulance doors, accompanied by her love, on a stretcher that would take her home for the last time.

“Quality of life.” We say it, but do we mean it? My patient’s husband did. He was able to put aside fear and grief to look at the big picture. His big picture included family, laughter and home. It did not include strangers, pain and hospitals. I am sure somewhere in his heart he wanted more time with this wonderful woman, but he chose quality.

As we explore the field of Palliative Care and try to merge it with the field of Emergency Medicine, this story is where we must start. How can we make a difference, one life at a time, in a fast-paced, high-acuity environment like the ED? I think the answer to that question is to put quality first.

Many ED physicians already think about quality in terms like chart review, peer review, and treatment guidelines. So why should the care of the chronically ill or dying patient look different? Well, it may not. It may just have to be looked at differently.

Quality does not equal quantity. It may mean that the best thing to do does not require more tests or procedures. It may mean that some days your job is not to save a life, but to respect life enough to let it go.

Quality, like beauty, can also be in the eye of the beholder. We must give our patients and their families the education they need to make hard choices, and support them with their decisions. As physicians, we have the advantage of knowing the medicine. Unfortunately, we are often at a disadvantage when it comes to knowing the wishes of our patients. We rely on the patients and their families for that very important piece of the puzzle.

A good palliative care program must give ED physicians the tools to address long term, end-stage and end of life issues that we simply did not consider in the past. It brings a realization, as a physician, that there is so much more we can offer our patients, even when it feels like there is “nothing more we can do.”