Alexander et al. Uncertainty — The Other Side of Prognosis N Engl J Med 2013; 368:2448-2450.
Excerpts:
….. has been a resurgence of interest in prognosis. This interest has been driven by a recognition that prognosis plays a central role in medical decision making, from counseling outpatients about stopping cancer screening to making decisions with patients’ surrogates about withdrawal of life support in intensive care units….
…. Despite a proliferation of data about prognosis and life expectancy, our best estimates still carry a high degree of uncertainty…..
…. The first task is to normalize the uncertainty of prognosis. We believe this step is important because it seeks to reset expectations. Patients are bombarded in the lay media with the notion that high-tech advances in imaging and genomics have resulted in definitive answers to clinical questions such as prognosis. Clinicians should be honest with patients about the boundaries of knowledge, saying, for example, “I understand that you want more accurate information about the future. The reality is that it’s like predicting the weather — we can never be absolutely certain about the future. I wish I could be more certain.”….
….. The second task is to address patients’ and surrogates’ emotions about uncertainty, acknowledging how difficult it may be for them not to know. Responding to emotional distress is an important goal in itself, but it may also have important consequences for medical decision making. Studies suggest that patients make poor decisions when they are anxious or experiencing strong emotions. Clinicians can invite patients to discuss these emotional reactions, saying for example, “It is tough not knowing what the future is going to bring.”….
….. The third task is to help patients and families manage the effect of uncertainty on their ability to live in the here and now. The search for certainty may impede the ability of patients and family caregivers to live in the present. They may believe that if they only knew what the future would bring, their decision making would be easier — they wouldn’t make mistakes or have to worry about regret. Patients and families may feel trapped ruminating about a future they cannot predict with complete accuracy or control. Continually asking and worrying about that future inhibits their ability to enjoy the time they have now. Rather than view uncertainty as part of the human condition, they view it — and therefore their life — as terrifying…..
…. Clinicians may be complicit in encouraging patients and families to dwell on an uncertain future rather than the here and now. Clinicians often say, “We need more time to be sure.” Although more time brings greater prognostic certainty in some cases, in other cases the hoped-for clarity never emerges and decisions are pushed off to an ever-more-distant future. The time spent waiting may be dear to patients and their families. Patients may miss important opportunities to spend time with family because they’re focused on the future and unable to enjoy the present. To help a patient refocus on the here and now, the clinician might ask, “What can we do to help you now, given that we are unsure of exactly what the future will bring?”……
….. To be sure, the present may not be a comfortable place for some. Living with anxiety, pain, or the support of a mechanical ventilator are reasons to focus on the future. Uncertainty may thus represent hope for some, an escape from the present for others…..
The issue with MS is the current knowledge that it gets worse, hence the EDSS scale. As an RRMS newbie I remember sitting in the neuros waiting room and seeing the patients with canes and the patients in wheelchairs. There was a certain certainty about the future, however uncomfortable that was. The drugs have brought more uncertainty. Will they reduce the number of patients who convert to secondary progressive, will I be a responder etc etc. Future drugs bring more uncertainty – will they stop progression, when will they become available etc, etc. When my friend got testicular cancer te doctor said he had a 95 per cent chance of getting over it. That's the sort of certainty / uncertainty I can live with. Unfortunately with MS and neurology, the only certainty we have up is the uncertainty. It will be good when neurology catches up with other branches of medicine.
"There was a certain certainty about the future" ???When?The future has always been uncertain with MS. There were always a small number of people with benign disease and there were always people with very aggressive disease.
What I mean't was that as it's a progressive disease there is certainty that you will get worse (the speed of the deterioration is the uncertainty). There's also certainty that we aren't going to Iive a long life – average life expectancy about 10-12 years less than the norm.
There are prognostic factors which can indicate a slower or faster disease course that should be discussed with newly diagnosed MSers – Gender, Age at diagnosis, type of early symptoms etc. There are the graphs which show the average time to various EDSS points which can also provide a framework to help newly-diagnosed decision-making.Of course, everyone's MS will be different but it's a way to help individuals evaluate their approach to DMT risk that's acceptable to them.