Respecting patient's wishes

I haven’t been in this business very long, but I have already seen many cases in which a patient’s wishes were not respected. What I write next may be surprising – it’s never the doctors or nurses or medical staff. It’s the family. This especially happens with very old or demented patients, or very young patients. The patient often wants one thing and the family, or at least their closest relative or spokesperson, wants something else.

One case I remember particularly well. This was an 80-something year old gentleman who had lung cancer, diagnosed perhaps a year ago. He had it surgically removed (which is not a small surgery by any means) and was doing relatively well for the better part of a year. However, more recently, he started changing. Whereas he used to be able to walk well, talk normally and knew where he was at all times, he occasionally became unsteady and unable to walk, he started slurring his words, and sometimes became confused about where he was, what day it was, or who he was with. After admitting him to the hospital, we found out he had lung cancer that had spread to his brain. At this point, there were three options for him: do nothing, give him radiation, or operate on him. Doing nothing would obviously lead to death the fastest way possible. Giving radiation is usually not curative, but can buy patients time at the expense of different possible side effects of brain irradiation. Surgery was the only option that really provides any hope of a cure, although the chances are incredibly slim, and for someone who is that old and sick already, there’s also a high risk of never recovering from the surgery.

We (the doctors) talked to the patient and his family extensively. It seemed the patient was learning towards doing nothing, or at the most, going through radiation. However, after many days, the patient’s family was able to convince him to go through surgery. Now, I’m not saying this was a bad choice – I have not yet had to be in this situation, and I’m sure it can be incredibly difficult. It sounded like this patient had been an incredible father, brother, uncle, etc and his family all wanted him to live many more years and have a wonderful life. His daughter, who was the main spokesperson, was a nurse and was a major player in convincing her father to have the surgery. I can’t say I would not do the same, although I hope not.

The patient had the brain surgery, with plans for eventual chemo or radiation after recovering, and slowly, over the next 4 weeks, deteriorated more and more. Before going through surgery, the patient had told the doctors (and I thought the family as well) that in no way did he ever want a feeding tube, or if his heart should stop beating or his lungs stop breathing, did he want CPR with shocks, chest compressions, or a tube shoved down his throat to help him breathe. However, it seems that once he became unable to make his own decisions after the surgery, his family decided that they wanted everything possible done for him.

The patient became unable to swallow on his own without choking and eventually, a feeding tube had to be put down his throat so that he could be fed. Even then, he started regurgitating food from his stomach into his lungs and developed a lung infection. His body became weaker and weaker and he could no longer go through physical therapy. His mind also deteriorated as became less able to talk or recognize his family members. I realize that this is a very difficult process, but the family members, including his nurse daughter, seemed unable to process the fact that he was going downhill and it seemed very unlikely that he was going to recover from this. They asked for the feeding tube to be put in (a risk in itself), which after it was inserted, could not be used much anyways because of his risk of lung infection. They wanted everything (CPR, intubation, chest compressions, shocks) to be done for their father, although in his debilitated state it was unlikely to succeed, and they wanted him to go through physical therapy whether or not he was in any condition to go through it.

It was not until 3-4 weeks of counseling the family almost every day or every other day that they finally realized that he may not recover and decided that they didn’t necessarily want him to go through CPR should his heart or lungs fail, although they were still pushing the feeding tube and physical therapy. Purely coincidentally, the patient died several days later. However, if we hadn't gone through those weeks of counseling and reasoning with the family, that patient's heart would have stopped, and we would have gone through 45 minutes of trying to bring that patient back to life, breaking ribs during CPR, trying to ram a throat down his throat, sticking every possible vein and artery with different needles to try and get IV's in or blood drawn, etc etc. All against the patient's wishes.

I tell this story for several reasons. For one, it highlights how someone’s illness is often a whole family’s problem, not just a single patient’s. You often have to not only treat the patient, but their entire family, and that can involve a lot of talking, explaining, and counseling, no matter how much many doctor’s may detest it or try to avoid it. It’s what you would want if your father were the one that were ill. Secondly, it demonstrates how important it is for someone to have that conversation with their family or to have a living will. If you don’t want CPR, or a feeding tube or anything like that, it’s important to explain it to your sons, daughters, other close relatives ahead of time so that they understand, because to be honest, if you tell the doctor, who then try to tell the family, they may not believe the doctor or understand. If you can get this in writing in a living will, it’s even better – then the family has proof of your wishes, and also less power (I believe) in changing how you want to die. I think this is especially important if you’re elderly or sick, but realistically, I think everyone should at the very least, talk about it with those close to them. It can certainly save a lot of heartache and problems later on.