One major health care challenge many patients face is not having their wishes honored at the end of their life. This sometimes leads to pain and suffering that might have been avoided if their end-of-life goals had been discussed ahead of time. The importance of discussing our end of life wishes with our loved ones and our doctors cannot be overstated.
Early in my career, I had a patient in her 80s come to see me for hospital follow-up. She had recently broken her hip, and had received excellent care at the local hospital. She had recovered well and she was happy with the care rendered. But she then said, "Dr. Hurley, I want you to know that I don't ever want to go to the hospital again." She went on to explain that she was in her mid-80s, and she felt she had lived a full life. Her husband passed away many years before and was "waiting for her in heaven." She was at peace with her life and her circumstances, and simply wanted me to know that if anything bad happened to her, she didn't want any aggressive care rendered. I was too early in my career to understand the importance of putting those wishes in writing.
Less than a year later, I got a call from her son. She awoke that morning unable to move half of her body, suggesting that she had a stroke overnight. She made it very clear to her son at that time that she did not want him to call an ambulance or take her to the hospital, so he called me unsure of what to do. I reminded him of the conversation she told me several months before, and I told him I would support his decision to follow her wishes. We hoped that her symptoms would reverse on their own, but that did not happen.
After being unable to eat and drink well for two days, she was very sleepy and no longer able to make her own medical decisions. Her son called me again unsure of what to do. Should we send her to the hospital now? I explained to him that she was probably dehydrated. If we took her to the hospital we would be able to rehydrate her and she would probably regain consciousness. But her overall outcome would probably require long-term nursing home placement. He made the brave decision to continue following her wishes, and we called in a hospice provider. She died in her home, on a Sunday afternoon, surrounded by everyone who loved her.
Sadly, my own grandmother's story did not end so peacefully. My grandmother had a bad heart valve, and she knew it. She needed a valve replacement but refused because she said she "did not want to have all those tubes sticking out of me" after surgery. Again, I was not wise enough to put her wishes in writing. As time would pass, her heart eventually failed, and she spent the last two weeks of her life with tubes sticking out of her in every orifice possible. Once the breathing tube was put in her throat, she was not able to fully communicate her wishes. She made hand gestures saying that she wanted the tube removed, giving the nursing staff little options but to restrain her.
I do not fault the hospital staff or my family for making the decision to do heroic things to try to save her life. Yet, her last two weeks of life were not spent peacefully. She had multiple blood draws, multiple tubes inserted and developed bedsores. Seeing her like that broke my heart. Certainly, this is not the kind of death I would have liked to see her experience. In the end, the battle was futile, and she died the same afternoon that we removed her breathing tube.
There was a study done many years ago looking at end-of-life decisions made by physicians when they personally faced terminal conditions. This study proved that physicians are much more likely to forgo advanced lifesaving measures when faced with unsurmountable health conditions. One interpretation is that doctors have seen how people die in the course of their medical careers, and acknowledge that is not the way they would like to spend their last days. Yet physicians also struggle with helping patients understand the consequences of their health care decisions, and they do not want to take away a person’s hope. Yet we must continue to advance these discussions.
With many end-of-life decisions, loved ones often struggle with feelings of guilt as well as loss. They feel they are not being faithful if they do not do all that can be done to try to save their loved one. Sometimes this leads to more sorrow as we see our loved one suffer. But often the bravest and most loving thing we can do is stop being aggressive and start comfort care measures.
I hope that everyone reading this will have a conversation with their loved ones and their doctors about their end-of-life wishes, and put those wishes in writing. Sometimes the greatest act of love at the end of life is to allow a natural death with dignity. Knowing our loved one’s wishes helps ward off guilt within those that are left behind, as well as reduces patient suffering.
Dr. Janet Hurley is medical director for population health at Christus Trinity Mother Frances, a family physician at Herrington-Ornelas HealthPark, and President-Elect of the Texas Academy of Family Physicians.