Preventing Life-Sustaining Treatment by Default

The Braun and McCullough paper in this issue describes some of the structural processes that occur during end of life decisions that contribute to the provision of treatments that sustain life at the end of life “by default”, that is, where no one, the patient included, has made a positive decision to approve a specific life-sustaining treatment, but the patient receives the treatment anyway. This is a worthy paper, but I do not agree with the conclusion that the primary way to approach end of life decision-making is to get each individual, however unwilling, to make very specific treatment decisions before their final crisis comes in order to relieve surrogates of the decision-making burden.

Each person takes a different path towards their death and has different medical and palliative needs during the process. Car accident or cancer, dementia or heart failure, decisions are generally made in a stepwise fashion, responding to the individual’s changing needs, even their changing values, as they approach death and find that they did not really know how they would react to the process. The principle of patient autonomy requires that options remain open, including for the individual to give their decision-making role to another at any time during their dying process.

Informed consent requires information that is specific and appropriate to the decision at hand. In the case of advancing dementia, for example, a fatal progressive illness in which patients are almost never involved in final decisions, one recent study (1) has shown that giving anticipatory guidance about the natural progress of the disease to caregivers reduces invasive and ultimately useless interventions at the end of life. The same process, at faster speed, pertains to rapidly- evolving emergency situations, in the field, the ED or the ICU.

Unfortunately, as a society we have decided to reward MD’s for procedures and for prescriptions but not for time, thought or discussion. Compounding this bias towards action over talk is the fact that even discussing end-of-life issues is in some circles controversial, raising fears of euthanasia or of coersion. In my experience, decision-making by default occurs where there is not enough time taken to discuss and to listen, and then to do it again and again and again as illness progresses and as the understanding and values of the dying individual and their loved ones evolve.

The answer is not to wring barely-informed end-of-life decisions out of reluctant individuals in advance, but to initiate an ongoing informed consent process with them and their loved ones. And when decisions are made by patients or their proxies, whether after a full and mutually satisfying process or during a rushed and emotional crisis, then it is our role as physicians to respect them as expressions of our patient's and proxies' current values and understanding of the illness process, knowing that both of those may yet change with time.

(1) The Clinical Course of Advanced Dementia Susan L. Mitchell, M.D., M.P.H., et. al; N Engl J Med 2009; 361:1529-1538

Competing interests:   None declared