QUESTION: “Life sustaining vs. comfort care, where do you draw the line?”
This is a question everyone faced with a life threatening illness and their significant others asks themselves. We can add to the question, “When do I stop seeking a cure and accept just comfort support?”
I’ll begin with the idea that just because the medical establishment can’t heal the physical body doesn’t mean there isn’t healing work left to do. There is still healing of the mental, emotional, and spiritual parts of us that need to be addressed. This is why I say dying isn’t a medical event. It is so much more. I will also say that just because we can do a medical procedure doesn’t necessarily mean that it is in the best interest of the patient to do it (This topic deserves its own article).
To be clear, let’s define cure, life sustaining care, and comfort care.
A Cure provides a return to a “normal” functioning life (in quotes because normal is a tricky word, whose normal, what is normal, etc.). A cure implies being able to address, partake, and enjoy the activities of living and being alive.
Life sustaining means keeping the physical body alive in whatever manner that is deemed necessary--including the use of artificial feeding (another whole article), machines (ventilators, dialysis, respirators), and/or advanced medical procedures.
Comfort Care describes a focus on the quality of a life being lived verses concentrating on the length of that life no matter the quality. Comfort care is good physical body care (address discomforts, hygiene, activity issues). Comfort care is emotional, mental, and spiritual support. Comfort care is addressing what is important to your well being now that your physical body is not meeting your needs. Comfort Care is guiding and nurturing those around you that you care about. It is encouraging you and your family/significant others to live the best you all can within the confines that your body and disease has put you in until you leave your body.
We often get so caught up in getting “fixed” at any price (and I am not just referring to dollars) that we lose sight of what our goal really is. Treatment does not necessarily mean cure. Yet for most of us that is what we are expecting when we do everything possible to stay alive (too often sacrificing in vain what little quality of life we have left).
For most people with a serious life threatening illness, and by that I mean for those people the doctors are having a difficult time fixing and whose illness is considered “terminal,” a cure is unlikely. The question then becomes how much breathing do we want to do when we can’t do much else. I know that sounds harsh but I want to get your attention. Most life sustaining treatment is about keeping the lungs, kidneys, and heart functioning--arms, legs, alert thinking, smiling, not so much.
My step father told me I could have all the life sustaining machines turned off when he had been brain dead for 3 days. He spent the last four months of his life is doctor’s offices, in the hospital, or in bed. As the result, he was too sick from treatments to be involved in much interaction around him. Some people want that and we in the medical profession will honor that choice. Some of us will make a different choice.
When it comes to making the decision of cure, life sustaining intervention, or comfort care, I think information and knowledge are vital components to decision making. We need honest information and knowledge about the projected outcomes of treatment, tumor shrinkage, expected life line, and quality of life. Once we have asked these pertinent questions of our physician and stated the direction we want our living to take then we must share that direction with family and significant others as well as to put our directives in writing.
Family will at some point be making the choices about how we will live the rest of our days. If there is no family or signifiant others then the medical profession will make those choices for us UNLESS we have in writing how we want to live until we are dead.
Family members have the most difficult time letting a loved one die. It will never be okay for a mom or dad or anyone close to us to die. We will want them where we can physically see them and touch them, even if that loved one can’t respond to us. Selfish, yes, but oh so normal and natural. One of the biggest gifts of love that we can give to our family and to those we care about is to tell them how we want to live until we are dead. Preferably before they need the information.