Most people take their good health for granted. In any ordinary day, you wake up, you go to work, have your coffee or tea or soda to kick off your day, eat whatever you want, whenever you want, and engage in whatever activities you feel like; one way or another you get through your day without giving a second thought to the challenges you have given your body, or what it has to go through before you give it a chance to rest again that night. It is natural that you would take it for granted - after all, for most people, most of the time, this is how it works.
But there are plenty of people for whom this is not the norm. Of course, there are the extraordinary examples - those with terminal illnesses or severe chronic disabilities, those obvious people whose life is controlled by a medical diagnosis which drives their entire existence. But there is a whole other world of people out there, as well, people who have, for reasons they may or may not want to talk about, a daily struggle with their body.
Living with chronic pain or ill health is a life sapping, energy draining, mentally extinguishing experience, and a lot of people out there are struggling silently, invisibly, to fit into a world that does not understand the ongoing skirmishes they face each and every day. It is a true war their body is waging on them, and it is difficult to feel like fighting each battle when your own body is the enemy and the rest of the world doesn't respect (or even recognize) the struggle you are enduring.
The last two weeks have been an interesting diversion in my life journey. I have been ill, and it has been an eye opening experience as to how people with more complex maladies are treated in this modern commercial medical culture we have designed for ourselves. I have visited several doctor's offices and emergency rooms in the last two weeks, and dealt with a range of medical professionals. The divergence of treatment, both medical and personal, I have received has been... well... enlightening, to say the least.
Just to be clear, I was not talking about myself above in terms of being chronically ill. My tiny personal medical issue is not the point, and is immeasurably less difficult than the people to whom I am referring. But I have several friends who do have chronic, serious, but largely hidden illnesses, and my recent experience has given me new insight into what their medical journey must be like for them. It is a little scary, if I am blunt.
So, for any medical professionals out there who want to help speed their patients on the road to recovery (and out the door satisfactorily) and wonder how best to accomplish that, here are some thoughts from a recent, mostly cooperative patient. Take them or leave them, but they are based on recent experience, and may give you something to think about.
The single most important thing you can do for your patient is to listen to what they are, and maybe even more importantly, what they are not, telling you.
The least perceptive provider I worked with had already, I believe, decided what was wrong with me even before entering the room. She was in a hurry, and looked at the chart outside the door, assuming that was all she needed to know. She asked a few questions, of course, but never really listened to the answers. She was disinterested in what I thought, even though I had better information than her about what was lurking in my past history (a crucial piece of this particular puzzle.)
She had already decided, from the limited symptoms she was reading, what was at the bottom of my problem. The original nurse taking the information cut me short and said I could give the whole list to the professional, but I was never given the chance, because she simply didn't care to hear any more about it. As it happens, she was totally wrong, and it set the ball rolling down the wrong mountain - a mistake which took several more medical visits with others to course correct and get on the right track.
On the flip side, the most perceptive providers both listened to what I was saying, allowed me time to tell the entire story, and then followed up with pertinent questions to make sure they had the whole picture before making any decisions about how to proceed.
For example, one provider thought to ask me what is normal for ME. That was a simple, yet huge question, because that provided the jumping off point for my whole problem. I can tell you, from my own experience, normal for me is not necessarily normal for everyone else. But I don't think about that when I am sitting in the doctor's office, because, well, it's normal for me, and isn't the reason I came in, even if it is obviously related in your mind. Or would be, if only you had known.
The reason someone comes to see you may well be rooted in the past, even though the current symptom which prompted the visit is new. You won't know that unless you listen, and then ask pertinent questions, so that you find out, from the patient, the entire scope of the situation. In my case, I think it's a pretty important question to have been overlooked for a week by many other professionals, who were too busy and overworked to think of starting at the beginning. It wasn't until a provider thought to ask me that things started to come together.
If I may veer off briefly here, I do not hold them entirely at fault, by the way. They are overworked and facing all kinds of time pressures, which I am sure makes it difficult to take a deep breath and just stop and listen. And, to be fair, I probably bear some of the blame, as well, because in ignorance I didn't make an issue of it as, in retrospect, I probably should have. So there is blame to go around. But I digress.
The point is, the patient doesn't know what you need to know, so make sure to ask the pertinent questions, so you understand things fully from the start. It takes longer on the front end, but saves lots of time and money and grief on the back end, I promise you.
Second, sometimes patients are looking for guidance, because they simply don't know what to do in the short term to get through the crisis while waiting for the long term diagnosis and plan of treatment. I quite literally begged several providers, not to provide the final answer, because I know that is not going to be as quick as a single visit, but a road map of how to get along until I get to the root of the problem.
It took almost two weeks, two ER visits, and a ton of phone calls and doctor visits before I found someone who simply validated my immediate situation, uplifted me in what I had been through so far and what I have done on my own to get by, and then told me what to do to resolve the immediate problem. It wasn't difficult for her - the information was readily at hand to every professional I talked with. It should not have taken almost two weeks to get that simple advice to make my life reasonably comfortable until I could get in to see the correct specialist to help me longer term.
Third, keep your records. Forever. Problems may rear their ugly heads a second time many years later, or after effects may suddenly surface, and patients may need that crucial information from you in order to move forward in the present. If you don't have those records available, you are setting back their progress. I was told by one provider that they don't keep records more than ten years, and by another provider that they are on an old computer system they can't even access any more, so in both cases, I cannot get my records. That seems inexcusable to me. I can understand eliminating records of simple, easily cured problems like colds or everyday viruses. But why not keep records on immunizations, surgeries and serious illnesses forever? Record storage is very cheap, and the potential benefit to the patient is incalculable. Make the effort. Seriously. It could save a life, or at least improve the quality of life. And that is what medicine is all about, is it not?
Fourth, do not assume up front that every patient is exaggerating or lying to get pain meds, attention, or whatever other negative acting out behavior you think they are engaging in. I understand you see it all, and nothing will surprise you any more. But try to stay positive about your patients until you have a reason not to be, and assume the best in them, if at all possible. If you haven't seen them in your ER before, if they don't come in to your office every other week for pain meds, if they are accompanied by worried family or friends who tell you they are not one to complain, take that seriously. They have probably reached their personal breaking point, and even if it isn't life threatening from your perspective, it is life changing from theirs. Be sensitive to their needs, and patient as they try to communicate what they need from you. It really does all come down to listening, doesn't it?
Fifth, some people wait until its a crisis, not because they don't know something is wrong, but because they are hoping it will go away if they just wait it out, or they would rather not deal with it, or they want to be on next year's deductible before they start something, or they don't have time right now, or, or, or.... Those people also will often underplay their symptoms for the exact same reasons. Those are the people you have to be especially careful with, because if you don't ask, they won't tell. You miss a lot that way.
They aren't trying to be difficult - they think they are the model patient, because they do not usually complain without strong reason. (Not that I would know anything about this type of patient personally, of course. This is just information gleaned from... other sources.) But alas, they are, in fact, the difficult patient, I think, because they are oystering away the information you need to make an accurate diagnosis. Unfortunately, they don't realize this, so again, it comes back to, you guessed it, listening with perception, and following up with pertinent questions so you get the information you really need.
Sixth, treat the symptoms while you are getting to the bottom of the problem. If your patient is already dehydrated or in pain or vomiting or has severe diarrhea or some other obvious issue when they come in, they are not going to get better while they wait four or six hours in the ER. Jump start the treatment, and maybe you can stave off worse problems. It is a slippery slope, so if you can head off the downhill slide, maybe it would be better to do so.
Seventh, medicine is still an art. Tests are good, but experience and gut feeling are often just as accurate. Sometimes you have to go with your gut, based on what you are hearing from the patient at the center of the storm. (Yep, I have a theme here. And it is listening.)
Finally, each and every patient is a person, not a dollar sign or a number, or worse yet, an inconvenience. Those pesky patients are not there for your benefit; you are there for theirs, and you would not have a vocation without them. They are someone's child, someone's spouse, someone's sibling, someone's parent. They are important, and they deserve respect, no matter how insignificant you think their problem may be. Sometimes the single most important thing you can do is to treat them as though their problem matters to you, and that they matter to you. How does that happen? You listen to them. (Again with the listening.) If you do that, they will feel valued, and it improves the positive atmosphere for everyone. It is amazing what positive energy can do for a sick person, and it will be more conducive for everyone if you act as collaborators instead of adversaries.
As I watch my friends and relatives deal with genuinely debilitating illnesses - cancer, RA, dialysis, Parkinson's, ALS, depression and other life changing medical conditions - I am grateful that my situation will be resolved without the long term interventions needed by so many who struggle, often silently and alone. I can only imagine what it is like for life to revolve around pill schedules and doctor appointments and tests and therapy and treatment plans, and I am filled with empathy for anyone who has to endure that stress. If my experiences of the past two weeks are any indication, there are a few people in the medical field who are simply awesome at their job, and should get some kind of medal for dealing with people in crisis on a daily basis so effectively, and a few others who need some additional training in the art of being human in the midst of the technology. I can only hope that when my loved people walk in the door, they are greeted by the former, and the latter are far away behind a desk doing paperwork somewhere out of range.
Listening is the fine art of paying absolute attention. If you are in a caring profession, it is your magic potion. It may not heal the illness in the body, but it soothes the wounded soul. And in the end, that is the more important outcome.
