In July of 2009, my mother died at the age of 94. For the last 12 years, she had suffered from a serious case of dementia. She did not fully understand who I was, where I lived, whether I was married or whether I had children. My heart hurt every time I completed a phone conversation with her.
My brother lived near her and visited the facility weekly to check on her care and keep up to date with her condition. Unfortunately, I lived about a thousand miles away.
He told me early on that she would confuse him with her own deceased brother, then later with our father. It caused him pain that she did not recognize him. Near the end, she was always glad to see him, but she had no idea who he was.
When she was 93, at the time of her last hospitalization, the nurse asked my brother to contact me about what to do if she had a heart attack. I was listed as her durable power of attorney for health care issues. To his surprise, I said, “Let her go.”
“Are you sure?” he asked.
“Yes,” I said. “If she knew where she was and what she was doing that would be different, but she does not know life as we know it.”
I know that was difficult for him to hear. After all, he had built a close bond with her over the years of checking in.
My mother, her second husband and I had discussed end-of-life issues over lunch one day. If she did not agree with what I believe, I figure she would not have made me her durable power of attorney.
Formulating a Belief System
I first began thinking about end-of-life issues in the 1980s. One evening I received a phone call from my Aunt Polly, who was preparing to go into the hospital the next day for heart surgery. She called to say goodbye, because she was not sure she would survive the surgery and to tell me that she had given copies of her living will to all her doctors and to the hospital.
She said that her friend, a division head in the government, had gone in for surgery and had come out of it not knowing how to choose what to wear each day. Nor was she able to make any other decision. Polly told me that she did not want to end up like that.
To be honest, it was a heart-rending phone call. One I will never forget. Fortunately, Polly lived a couple more years, but that conversation did set me on the path of wondering what I believe. It took a while, but in my role as a patient representative checking on care for patients in a hospital, I began formulating my beliefs.
Removing Life Support – Our Decision Is Not the Final One
Over the years people have come to recognize the importance of Living Wills. Most hospitals now require patients to have a Living Will signed before they enter the hospital for any kind of surgical procedure. Today, it is even more important for people of all ages to discuss their potential end-of-life preferences before any hospitalization occurs and they are put on life support, which may include a respirator.
As a volunteer patient representative who discussed care issues with patients and their families, I realized that from time to time people are put in the dilemma of trying to decide what to do when a loved one unexpectedly arrives at the hospital and is put on life support.
By the way, the television version of being put on a respirator is nothing like what goes on in a hospital. A respirator is not a passive machine. It very forcefully pushes air into a person’s lungs, expanding the ribs. Then it pauses, while the air instantly escapes and deflates the person’s lungs and rib cage. This happens several times a minute.
We have a wonderful medical system that can keep people alive under extraordinary circumstances. For that, I am grateful. This two years ago, my husband had emergency surgery and two other surgeries. Without advanced techniques and procedures, he might not be alive today. The question for me is: What kind of life will this loved one have? Will he be himself? Will she be only a shell of herself?
I have personally witnessed what can happen when a family member is put on life support. In the first case, a teenager was in a serious car accident. Previously, he had told his parents that if an accident of this sort happened, he would not want to be kept on life support. After several agonizing days of trying to save their son, his parents decided to go no further with his care and to let him go.
The officials at the hospital deemed that letting him go was wrong, so they had him put on life support. Once anyone is put on life support, the family has to petition the court to have the person taken off. After days at trial, his family won, and the young man died soon after of being taken off life support.
A couple of years later, in another case, I spoke to the husband of a woman who was taken off life support. He was unable to answer my questions about the care. All he could say was, “It’s a miracle.” When I asked what the miracle was, he replied that they had taken his wife off all life support a week before and that she was still alive.
These two cases helped me understand that when we make the decision to let our loved one go, the ultimate decision for the end of life is not in our hands. Should the person pass immediately, then they were supposed to pass. If they linger on, then they are supposed to stay longer.
If you are in the unpleasant position of deciding whether to let someone go, you need to understand that while you may decide that it is time to remove life support, the body and the person’s Higher Power will make the final decision of when that person is to pass.
This can be a comfort. Knowing that your decision is not the final decision can relieve you of the guilt that you might feel during a very difficult time.