Viki Kind - Clinical Bioethicist

When Strangers Decide if You Will Live or Die

I work as a clinical bioethicist helping people when they have difficult decisions to make regarding life and death. There are so many things that happen behind the scenes in healthcare when it comes to dying. One of the hardest things for me to witness is when a patient has no one to speak for them at the end. We call this person the unrepresented patient or the unbefriended person. This is someone without any friends or family who can make sure they have a good death.

So what happens to them? In some cases, a public conservator or guardian is appointed to make their decisions for them. This is a stranger making decisions for another stranger. There is nothing personal or meaningful in this process.

If there isn’t a guardian available, a group of people at the hospital will make the decision for this person. Sometimes we call this an advocate team or a moral community. This group usually consists of a doctor, nurse, social worker, chaplain, members of the ethics committee and community members. As a group they will make the decision whether someone should live or die. Unfortunately this decision is based on very little information about who the person is or what is important to them in their life. It is usually a medical decision instead of a human decision. Not that the advocate team doesn’t try to make it personal.

Let me tell you about one such patient who had this group of strangers make his decisions for him. He was an 83-year-old gentleman who had been living in a nursing home for the past 12 years. At the nursing home, he was able to eat and walk around, but he had severe dementia and could not communicate with the staff. In the 12 years he had been living there, nobody ever visited, nobody ever called and nobody sent him a letter. He had become invisible. The staff cared about him and took good care of him but they were not family.

I met this man after he'd had a massive stroke which left him paralyzed, in a coma, unable to eat or drink and dying. The social workers at the hospital did everything they could to try to find somebody who knew him, but nobody could be found. I live in Los Angeles and we don’t have enough people who are willing to be a public conservator or guardian. So now we use advocate teams to help make decisions for those who are completely alone and silenced by their disease.

Here is my story. I came into the hospital that day and I went to the patient’s bedside because I refuse to make a decision for somebody that I haven’t met or tried to connect with. I knew he wasn’t going to be able to communicate back to me, but as I sat at his bedside, I held his hand and connected with the human inside this body in the bed. The only noise in the room was the sound of the machines breathing for him. His body was a shell and it seemed like he was already gone. I sat with him and talked to him and told him that I would try to do right by him. I cried a few tears as I realized he was already gone. These are the difficult moments in my job.

I went to the meeting and heard what the doctors had to say and listened to what the social worker had discovered about this man. This was a man who was dying and there was nothing we could do to change it. We asked all the questions we could think of about his medical condition and if there was any hope. We were told there was not. I then asked the social worker about who this man had been at the nursing home. Had he enjoyed his meals? Had he enjoyed interacting with others? What had brought him joy even in his limited condition? He had been living a life with small pleasures and not too much suffering. But now, he couldn’t feel anything. He couldn’t enjoy eating a cupcake, watching something on TV or going to the sing-along in the activity room.

In the advocate team meeting, we all have to agree on what we think we should do. In this team meeting, we decided that there was no way he was going to be able to return to enjoy any part of his life. He was dying and there was no turning back. Our team agreed that he should be made comfortable and be allowed to die a natural death. This included being taken off the ventilator and being allowed to die.

I wasn’t going to tell you his name because he had become invisible to the world. But I have changed my mind because he wasn’t invisible to me. His name was James and I was part of his life and his death.

These are really difficult decisions. These are decisions that should not be made by strangers. But people in hospitals all over the nation are having their life and death decisions made by committee. This is not how it’s supposed to be. People shouldn’t be dying alone and they shouldn’t be living for 12 years without one person visiting them.

Sometimes it’s hard to do the work I do. Sometimes it breaks my heart. But I have the courage to walk into the darkness with people. Whether it’s the family who is grieving at the bedside, the patient who is afraid of what is happening to their body or the health care professional who can’t bear to participate in one more death. I walk with people on this journey and ease their way.

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