While the subject of Susan Gubar’s column this week is about whether or not to get a Hickman line or not, the more interesting part is about patient empowerment and its limitations given our limited knowledge as patients, and choice being provided when it is more a matter of convenience than critical to the treatment. Quote:
As is often the case, the decision is left entirely to me. One of the ironies cancer patients face is how often we are asked to participate in medical decision-making when we are least confident about doing so. Cancer has taught me that I little know myself: I had no discernible symptoms at the onset and recurrence of cancer, and none, for that matter, of the dangerously low levels of magnesium that came to light on the first day of the trial. Yet just when I fully realize how poor a judge I am of my own condition, agency is assigned to me: I am supposed to take responsibility for which protocols would be in my best interest.
Doctors and nurses may be constrained to recommend the implanting of a device that would make their jobs easier, but they do not hesitate to urge patients to undergo serious operations, to accept toxic infusions or to enroll in experimental studies. In the divide between medical authority and patient control, the port lands in the second category. Despite well-meaning talk about patient rights, making decisions — about all sorts of issues — can be troubling for those whose cancer has driven home their ignorance about themselves. I have no way of knowing if I will remain in the current trial, or for how long. Would the trial close because of too many bad side effects or, worse yet, deaths? Might I have to drop out because of dangerous blood counts or infections? A storm of unanswerable questions swirls about me.
In my case, I was not given a choice, as I was given a PIC line for the conditioning regime and aftermath of my auto SCT, and a Hickman prior to my allo SCT. Sometimes not being given a choice removes one additional source of anxiety.