There are some questions that are probably commonly asked by people who are left behind after a person with a terminal illness dies, questions to which I realize there are likely to be no answers but that keep coming back to me nonetheless. Some of these are centered around patient care; as a health care worker myself, I fully understand the difficulties of staffing shortages, paperwork demands, insurance issues, and the like. But I also think that there are unfortunately some health care workers, including some doctors, who aren't really focused on the quality of their care.
We came across some of those in my dad's case, and I will always remember them, just like I will never forget those who provided my dad and my family with outstanding care and compassion. I just wonder if any of them will remember my dad.
I think there should be some kind of required continuing ed for physicians, and maybe for nurses and some other health care workers too - especially those who frequently treat patients with catastrophic diagnoses - a training that could help them to realize (or to remind them) that patients are PEOPLE, not cases or numbers or statistics. I view much of what happened in my dad's care as being a symptom of what's wrong with our health care system (and maybe even with our society) today: so often we just accept and often even continue to put on a pedestal the physicians who don't or can't take the time to stay on top of patient care as we FIGHT for treatment, for attention, for proper care. The utter lack of case management and the absolute lack of follow-through and follow-up are perhaps what disturb me the most about what went on during Dad's illness.
And so the question becomes - where does the "treatment" end and the "harm" begin? When does the good (or the possibility of good) stop outweighing the bad, the awful side-effects and the risks?? It becomes a judgement call, one that can easily be made with emotion interlaced with the medical knowledge. In fact, isn't that what we want in a doctor: someone who cares about us on a personal level?? And yet that very situation could affect our care by playing into how our doctor handles things on down the road.
I think this is particularly tricky in the case of an oncologist. Cancer doctors are in the business of providing Hope to their patients. Many of them spend more time per appointment with each patient than doctors in other specialty areas do, and they usually see their patients more often than other doctors do too. As well, the subjects that are discussed within the walls of the rooms in the oncologist's office are very often much more emotional than the usual chit-chat that goes on in the offices of other doctors. All of this leads to the establishment of more of a connection between an oncologist and his patients - again, not at all a bad thing, but something that must enter into the recommendations given about treatment, including end-of-life treatment issues.
Another obstacle for physicians in caring for terminally-ill cancer patients has to do with the rules of hospice: in order to qualify for hospice, a cancer patient not only has to have a life expectancy of less than six months but also must agree to forego any further chemo treatments of a "curative" nature. When you think about it, that isn't really fair, especially considering that patients with other terminal conditions aren't forced to stop their medications to enter into a hospice program. I can see how it could be difficult for an oncologist to switch over from thinking "I am going to help this person beat the odds" to a mindset of comfort-care only. I can see where an oncologist would keep wanting to offer more - a Plan B, and then a Plan C, and so on, offering Hope, if not for a cure then for improvement. I can see where the concept of quality of life (what even is that for most terminally ill patients?) can be confusing. Once the cancer has set in for good, there often isn't a whole lot of quality, especially if brutal treatments like some chemos are continued, and so it become a judgement call, which must be made based on the experience of the physician and, of course, on human emotion.