Discussion Post for THE LOST ART OF DYING, Chapter 9, Pages 179-197

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

Right on!

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.

5 thoughts on “Discussion Post for THE LOST ART OF DYING, Chapter 9, Pages 179-197”

  1. I don’t know if I agree that doctors “become doctors because our ability to cure gives us power over the death of which we are so afraid.” That has not been my experience. I do believe that doctors are used to thinking and presenting risks and benefits. But the downside of some treatments are unknown and in God’s hands. Ms. Welch had a one in three chance of recovery and she chose to try an beat the odds. The Massachusetts General study I find confusing because I thought standard cancer treatment and palliative care were mutually exclusive. The treatment arm of the study was not particularly aggressive but standard. It seem obvious if you add to this care holistic and empathetic care the patients would do better – and they did add eight weeks to their life. But isn’t this the kind of care we should always be offering?

  2. Vera O -Mr. Turner is not a simple one time example thing…he exists today….on and on. However, a person with a full life, children, grandchildren, can in good conscience choose treatments well beyond the norm. There is no right and wrong. However, at some point, age OR frailty as discussed, one should think and hope of choices that are “right” for the individual……which includes emotional intelligence as well
    as understanding and compassion, on their part and that of the medical team. Enlightening an entire society is not easy…covid a good example…so, again, it will take lots of work for the 21st century man to make enlightened decisions…..quality versus quantity….of life..
    number of hospitalizations….and so forth. …and, we cannot ever forget, that medicine is more than science; it is a business as well…
    and in later life, for some, if not all, there remains a choice as to whether we purchase the products being offered. It’s not easy to
    have this conversation with even your spouse when they have not come to terms with all that is involved in his or her own finitude…

  3. I recently watched a video collaboration of the Public Policy Office and the Respect Life Office of the Archdiocese of New York regarding the difficult moral and ethical questions surrounding end-of-life care. They gave an excellent basic summary regarding ordinary versus extraordinary interventions in addition to the legal options and documents to consider. Although we cannot post links here, they also mentioned the New York State Catholic Conference of Bishops and the National Catholic Bioethics Center as trusted resources for the faithful trying to navigate through this topic. The takeaway is that every person is different and every situation is unique. However, we can find meaning, comfort and guidance through the consistent teachings of the Church. We respect the sanctity of life even as we evaluate the benefits and burdens of the options available to us at the hour of our death.

  4. It’s Death and Dying 101. Unfortunately it is necessary to constantly repeat the principles because circumstances change, generations change and technology changes. Also the book talks about family making dnr decisions in a crisis mode. That’s why it is best to have a discussion with whomever may be in that situation. More than one discussion may be necessary. Then when the crisis comes, you are stating the patient’s wishes not your own. This point often gets lost.

  5. I do not think western medicine does well with subjective measures, and as much as we try to quantify it, quality of life is a very subjective measure. (Western medicine is also notoriously bad at other subjective things, like back pain, etc.) So the back and forth of discussing what this means to an individual & their families becomes of increasing importance as the threshold for “life” lowers with ever more extraordinary measures coming onto the scene. I think the division between ordinary & extraordinary is very helpful!

    I also really appreciated the anecdote about Dr. Dugdale’s friend and the doctor who continued to offer more treatments. It matters so much the way that things are framed. It would be unethical for the doctor not to mention this treatment as a possibility, but it is also unethical not to give a realistic measure of the chance of success. Also, in the hospital, structures work against this balance – there are multiple consulting treatment teams, social work, a tight schedule, etc… So how do we strike that balance, especially in such a way that builds trust with the patient? I recently had a patient, with a very poor prognosis, who was convinced that the medical team lying to him and was out to get his possessions, even though he was unable to take care of himself. Discussions of quality of life and goals of care fell on deaf ears, and I unfortunately suspect that he was so wary of being taken advantage of that no one will be able to help him be more comfortable.

    Of course, difficult situations like that are hopefully outliers, and I think Dr. Dugdale makes a very honorable plea throughout her book towards a more mature, realistic approach to preparing for death that will benefit the vast majority of people. I think it’s important to remember that for most people, understanding of these ideas needs to come from a non-medical source (and not the TV). Religion & family goals should not hamper a good death, but aid it – and that is unfortunately not the reality for many people. Someone’s doctor should not be the first person to talk to them about their goals, which is why books like this are so important.

    I think it’s worth mentioning towards the end of our discussion that there are other resources towards making these conversations more normal (not like, flippant normal, but normal serious conversations amongst close family and friends.) I’m thinking of a card game, Go Wish, that is designed to facilitate discussions – and I’m sure there are others.

    Very much looking forward to our discussion with Dr. Dugdale!

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