The title of this post is not something that came from my own head, it’s a quote from an interview that I heard of Katy Butler on NPR last week. Ms. Butler also wrote an article in the Wall Street Journal in September that a friend was kind enough to draw my attention to. The gist of her interview was about her book (“Knocking on Heaven’s Door”), which I admit that I have not read, although I might add it to the long list of books that I need to read. Basically, she was arguing that despite the fact that we talk extensively about wanting to die a “good death,” we act as if we are actually never going to die. As a result, we end up engaging in ever more intrusive medical interventions in the hope of extending our lives as long as possible. The end of all of this is that instead of dying peacefully at home, surrounded by relatives, most people will actually die in the ICU of a hospital. Ms. Butler’s argument, at least in the interview and in the article, was that we need to think much more carefully about surgeries, treatments, etc. and whether or not they are truly needed or necessary as we age. Additionally, she argued that we don’t often weigh the risks and the benefits of treatment. Her own mother refused a serious, but relatively routine, heart surgery when she was 84 because of the stroke and dementia risks associated with the surgery. With the surgery, she could’ve lived until 90, while without the surgery she had a 50/50 chance of dying within 2 years. The doctors didn’t understand her decision not to have the surgery, but she was adamant that she wanted to live out the remaining months, or years, of her life as fully as she could, and she didn’t believe that the surgery was worth the risk.
At one point in the interview, the interviewer read out questions and comments that listeners had. One of the listeners said that her father’s end of life plan was that someone should “just take him out and shoot him,” but that he hadn’t been more specific. Ms. Butler’s response was, “Just take me out and shoot me is not an end of life plan,” and she encouraged the listener to sit down and have a talk with her father. As I listened, I couldn’t help but think that most people really have no idea about how to plan for the end of life, other than hoping to die peacefully in one’s sleep after living to a ripe old age. Unfortunately, that doesn’t often happen, so we are usually faced with difficult decisions about what to do. Unfortunately, the advice that most people will receive about how to make these decisions is often in line with a culture which views suffering and any type of lack of awareness as a reason to “just take me out and shoot me.” What about those of us who truly believe that life is a gift, and that life is not to be ended prematurely? What about those of us who believe that there is value in suffering, and that unfortunate diseases such as cancer, dementia, Alzheimer’s, and the like do not diminish the underlying dignity of the human person? How are we to make these types of decisions?
There was a time in my life, not too long ago, when I was in the midst of needing to make these kinds of decisions. These are the types of decisions that my first husband and I needed to make when we were making decisions about how to treat the liver cancer that would ultimately take his life. Fortunately, I was also blessed to be taking a class in Bioethics, so I had access to the information and the people who could help us navigate these difficult and emotional decisions. The important lesson that I learned that helped both my husband and I as we approached these decisions was the knowledge that as Catholics, we are required to engage in “ordinary means” of treatment, but we not required to engage in medical treatment that would be considered “extraordinary means.”
First, “extraordinary means” doesn’t mean treatment that is “out of the ordinary” or “unusual.” Rather, it means treatment that would be more harmful to the patient than it would be beneficial. “Ordinary means,” is treatment that would be more beneficial than harmful. The burdens that one might consider when thinking about extraordinary treatment are pain, cost, inconvenience and discomfort, among others. It is important to remember that what will be extraordinary in one case, might be ordinary in another, depending on the factors involved. Also, it would not be “wrong” to pursue extraordinary means, although one would not be morally obligated to do so.
My first husband battled a rare form of liver cancer several times over the course of his life. The first two times, he was able to beat it, but the third time that it came back it was inoperable, and the more conventional treatments that he had used previously were no longer open to him. As a result, he was left with pursuing experimental treatments, which he did with courage and hope. One of the treatments seemed to be working, but after he developed a blood clot in his liver, he was no longer eligible for the treatment and his liver began to fail. At this point he was in almost constant pain that would send us to the emergency room many, many times. Any treatment options had less than a 1% chance of working, and they would almost certainly result in him being hospitalized for dehydration, pain, or illness. In addition, the treatments themselves would’ve required us to spend extensive amounts of time at the hospital. My husband made the decision that if he only had a few months to live, and if the treatment had virtually no chance of success, he would rather spend the time that he had remaining with his friends and family. As a result, he made the decision to discontinue treatment and to enter hospice. We had a wonderful hospice experience, and since the hospice was able to give him IV pain medications at home, he was able to live out the rest of his life pain free, for the most part.
In my husband’s situation, pursuing further treatment surely would’ve been extraordinary means. The treatment had virtually no chance of success, and would have made the remainder of his life miserable. While it wouldn’t have been “wrong” to continue treatment, it was a good, and moral, decision to stop treatment. Because he made the decision to stop treatment, he was able to die at home, peacefully, rather than in a hospital. Although I don’t know everything about Ms. Butler’s mother’s situation, it seems like she also made a good decision to refuse treatment that was extraordinary in that it had the potential to cause more harm than benefit.
One of the things that Ms. Butler discussed in her interview was that a death in the ICU of a hospital can be traumatizing for the family members, and can actually lead to post-traumatic stress because of all of the decisions that have to be made. In the weeks leading up to his death, my husband told me that what he wanted most was to be able to say goodbye to his loved ones before he actually reached his deathbed, and to have peace and quiet in the house when he actually was in the process of dying. For the most part, both of these things were able to happen, only because we were not in the ICU of a hospital. He received Last Rites, said goodbye to everyone, and passed away peacefully in his sleep. It was an incredibly sad, difficult and powerful few days for those of us who walked the journey with him. But, the manner of his death, I think, helped me to begin to process my grief more quickly. Rather than being forced to make all sorts of medical decisions in those last few days, I was able to just focus on him and the last days that I had with him. I would say, therefore, that he did have a good death.