In this final chapter I’d like to offer a concise and practical guide–a handbook, if you will–on how to live well in order to die well.Page 182
How are we to determine when a procedure or hospital stay is actually unnecessary?Page 187
Determining whether procedures and hospitalizations are practically necessary is nearly the same thing as determining whether they are ethically necessary. It’s a matter of weighing the expected burdens and benefits of a plan of treatment or course of action in order to determine whether it is reasonable or not. In the ethical tradition of the Catholic Church, the terms “ordinary” and “extraordinary” are used to designate whether a particular means of preserving human life is obligatory or morally optional. I think the most important thing to remember is that the determination is about particular treatments or courses of action. It’s not a matter of choosing life or death. We always choose life. But we don’t have to choose every possible treatment that might extend our lives. We can rightly decide that a given treatment or course of action is more trouble than it’s worth.
The first step in determining whether a treatment is futile is to take stock of frailty.Page 190
Dr. Dugdale lays out the assessment of frailty developed by Linda Fried and her colleagues, according to which “individuals are classified as ‘frail’ if they are over sixty-five years of age and three or more of the following criteria apply” (Page 184):
- Unintentional weight loss of ten pounds or more in the last year
- Feelings of exhaustion
- Physical weakness
- Slow walking speed
- Low physical activity
In assessing the benefits and burdens that will be brought about by a particular treatment, we have to consider how the treatment will affect the particular person in question. There are very few (if any) treatments or procedures that are always ordinary or extraordinary, obligatory or optional. It depends of how the treatment is likely to affect the patient, both positively and negatively. A person who is frail will be much more likely to experience serious negative consequences of a treatment than a person who is not frail.
The next step is to press the doctor for meaningful answers to the tough questions . . . such as, “How much is this going to help me?” and “What are the downsides of the treatment?” And you can get specific . . . you might ask, “Have you ever seen this drug help someone with my stage of cancer?” Or, “What is the likelihood that this treatment with make me so sick that I won’t be able to enjoy the things the bring meaning to my life?” . . . It’s also helpful to push surgeons to hell you what sort of recovery you should expect.”Page 190
I think this is great advice. We can only make good decisions if they are informed decisions. Dr. Dugdale relates in this chapter, and in previous chapters, how doctors are inclined to emphasize the positive and minimize the negative outcomes of treatment options. “Press the doctor for meaningful answers to the tough questions.”
What this Massachusetts General study showed is that even when the prognosis is grim and patients are dying, they mihgt live longer when they opt for less aggressive medical care and choose instead to prepare for death.Page 194
When treatments are judged to be extraordinary they are morally optional. One can decide for or against such treatments. Sometimes declining extraordinary treatments is likely to hasten death. When breathing tubes attached to artificial ventilators are removed, for example, the person who is unable to breath on her own will likely die within hours if not minutes. Removing the breathing tube in that circumstance, often referred to as “terminal extubation,” can be a good and morally upright decision. That would be my decision if my inability to breath could not be cured. It wouldn’t be a choice for death. It would be a choice against intubation, which, in this case, can be judged extraordinary. In such a case, the burdens of mechanical ventilation can be judged to outweigh the benefit of the healing that is no longer seems possible. We can rightly allow natural death to occur when medical treatment no longer offers reasonable hope for healing.
What the Massachusetts General study demonstrates is that sometimes declining extraordinary treatments does not hasten death and can even prolong life. The choice to decline aggressive medical care can help people live more comfortably in there own homes or in hospice facilities that a generally more peaceful and pleasant than hospitals. The decision to decline aggressive treatments is usually a decision to focus on quality of life rather than quantity. ‘Aggressive treatment might help me live longer,’ the thinking often goes, ‘but I would rather be as comfortable as possible at home with my family.’ The “shocking” evidence of his study (to use Dr. Dugdale’s word) was that, in the cases they considered, those who chose aggressive treatment did not live longer. Choosing quality of life resulted in greater quantify of life as well. All decisions need to be made on a case-by-case basis. It seems, however, that choosing to decline aggressive treatments is very often the better choice.
All of us should acknowledge our finitude and consider carefully–and well before the end–our quality-of-life goals when evaluating treatment options.Page 194
For some people, CPR imposes far more burdens than benefit. Reviving someone who had died comes at a tremendous cost to that person’s quality of life.Page 196-197
‘Don’t save my mother’ is a hard thing to say. But if your mother’s situation is anything like Mr. Turner’s, described in the first chapter of this book, you have to say that. In order to make good decisions in such emotionally-charged circumstances, we need to think ahead and be prepared. If I know in advance that CPR would not be the right choice for my parents in the event they become frail or chronically ill, and I prepare myself and my family to make the hard decisions we might have to make, I will be much better able to make those hard but good choices when the time comes.
Here are several articles I have written about end-of-life health care for anyone who might be interested.
I look forward to reading what you have to say about practical preparations and decisions about hospitalization and potentially life-sustaining treatment.