Tough conversations and Paperwork.

Two kinds of conversations with patients are particularly tough, and sometimes related. One conversation is delivering bad news, such as the diagnosis of cancer or of a diagnosis such as HIV/AIDS. Sometimes the conversation can be tempered by a positive such as having caught the disease in an early stage, or that enough treatments are available so instead of being a virtual death sentence, it becomes a chronic disease.

The other conversation that can be difficult is talking to patients about end of life issues. Part of it is resistance as facing one’s mortality is difficult. Unfortunately people often wait until it’s too late to have conversations with family and their physician. This can put a person’s physician and family into difficult positions. By this I mean, if a disease such as Alzheimer’s has advanced enough, a patient may not be able to voice an opinion on whether he or she would want CPR, Intubation etc in the case of a heart attack. Anyone who has practiced long enough has seen patients who are unable to live independently due to dementia and have no family or other person to act as a proxy to make decisions on his or her behalf. It can take weeks or months to go through the court system to have a healthcare proxy, guardion or some similar decision maker legally assigned. In other circumstances, someone may be incapacitated by the effects of a disease, stroke, etc and unable to speak for him or herself and end up getting far more treatment at end of life than they would have wanted when they come in unconscious, unable to breath for themselves, etc and end up on a ventilator (breathing machine).

There are several ways around this. All start with conversations with family and/or friends in deciding who will be a health care proxy. There are health care proxy forms that can be filled out. Also a form known as “five wishes” is also a good place to start. The site it can be found at is aging with dignity. The first two pages act as a health care proxy form as well. The pages on the five wishes allow for more narrative as to what one’s wishes are for end of life care. Once either a healthcare proxy form or the five wishes form are filled out, they do no good if left in a drawer where no one can find them. A copy should be given to your primary care physician. Another copy should be kept in a place where you or your proxy can easily access it (preferably he or she should have his own copy as well). As circumstances arise (for example, if your healthcare proxy dies or decides they can’t/wont potentially act as a health care proxy and you appoint a new one), a new form can replace the old. However your doctor should have the updated forms for your chart.

At some point someone might decide that based on whatever set of disorders they have, that should their heart stop or that they require CPR for whatever reason that they want to be “DNR” this stands for “Do Not Resuscitate”. This often is a point of confusion when talked about in a hospital setting. This does not mean stopping treatment for cancer, heart disease, lung disease, etc. It simply means that if some’s heart stops or they stop breathing, that CPR or advanced life support measures won’t be started. There is a form such as the which is used to inform EMTs and other responders about your choice should they be called. Hospitals have their own forms that are used for inpatients.

For people with a disorder or set of disorders where one’s life expectancy is a year or less, a MOLST form can be considered. It delineates what life sustaining interventions (eg, feeding tubes, dialysis, etc) will accept.

Lastly a “File of Life form” can be filled out. I referred to this, perhaps a bit indirectly, in my last post. This is a form that can be filled out indicating whether one has a health care proxy, who that person is, where the form can be found. It also lists medical problems, medication lists, doctors’s names and phone numbers. Often they are put on the the refrigerator door so if one is unable to speak, EMTs and other responders can have important, and perhaps even life saving, information without having to search for it. Some forms are also small enough to be placed in a wallet.

Not all of these forms need to be discussed at one visit with your physician. To find them online you can search for the terms of “health care proxy”, MOLST, DNR, “file of life” and add the state you reside in for forms specific for your state.

Talking with your doctor.

As this is my first blog post I’d like to start of by saying a few of things. One is thank you for visiting my blog. The other is that I won’t be responding to specific questions on this blog, except perhaps in a relatively generic way. In other words, talk with your primary care physician before you act on anything you read in this blog. For that matter, it’s probably a good idea no matter where you get your medical information from. Lastly, I have yet to decide on a schedule for posting. I don’t know whether it will be once a week, once a month, something in between or even less frequently.

And now to the subject of today: suggestions for talking with your doctor and getting the most out of your visits.

As a practicing physician there are times when I think my patients and I speak different languages even when English the first (and sometimes only) language either of us knows. For example there are times when I’ll be seeing a patient for the first time and I’ll ask what medications he or she is on and the response I get is along the lines of “a heart pill” or “a blue pill, for my heart”.  Other times the patient will know the medication name but not doses so I’ll get the response, for example “metoprolol twice a day”.  This is somewhat better but as medications often comes in multiple doses, knowing the dose is important especially if there is a need to change doses or when a patient calls in for a refill.  This leads me to my first suggestion: make a list of all your medications and include the dose of the medication and frequency. As some medications have more than one use, adding the condition can be useful. For example, some anti seizure medications and a class of blood pressure pills called beta blockers are sometimes used to prevent migraine headaches in people who have them frequently. It also can clue your physician into medications that other physicians you see are prescribing.

A list might look something like this:

Metformin     500 mg twice daily      diabetes

lisinopril    10 mg once daily  high blood pressure, to protect renal function

gabapentin    300 mg three times daily for neuropathic pain

Well, you get the idea. It is also helpful if, heaven forbid, you get sick and need to visit an emergency room on a weekend (your regular doctor might not be covering) or out of state. You might not even be in a position to talk and give information. This last possibility brings up the idea that having a “file of life” – a small document that also lists your name, doctor’s name, health problems, etc – on you in case you can’t speak for yourself.

Another thing that can help you communicate with your doctor is to actually bring a list of written questions/concerns you have to your visit. This is especially important for a few reasons when you have a number of medical problems. One is that even if you’re at a routine office visit, a symptom that you bring up might alert the physician something new is going on, a known condition could be getting worse (or better so now you’re over medicated), or medications might be interacting. Realize however, that if the list is long, your physician might choose to focus on what he or she feels is the most one or two important items on your list (or the one or two that you both agree are the most important). Yes, the knee pain may be making life miserable for you, but if you’re also getting chest discomfort or winded just walking down a hallway or up a flight of stairs, your doctor might feel that focusing more on your heart and lungs might be more important this visit as this could indicate problems with those two organ systems. It also avoids making your visit longer than it needs to be. Often if someone has a lot of issues, a physician will have a patient come back to go over the other issues at a future visit. There are cynics out there that might say we do this to make more money. To counter this I would say that I would not want to miss diagnosing severe heart disease or a potential cancer because someone was coming in for something unrelated. Though I like to believe that all doctors give each patient the time they need to address every issue at each, we also need to keep in mind that there are usually other patients waiting as well!

Having a family member with you can help if you feel overwhelmed by the number of health issues you have, or if you have memory problems. The family member might remember something you forget, for example. I think in general physicians don’t mind when a family member accompanies their patients. There may be some circumstances/questions a patient doesn’t want a family member to know about, this is one of the reasons we shy away from having family (especially young family members) act as translators when a patient has limited – or even no – proficiency in English. For this reason, don’t be surprised if the doctor asks the family member to leave the room for a few moments or chooses/requires the services of a professional translator.

Try not to make a diagnosis yourself. There is a reason that the maxim “doctors who treat themselves have a fool for a patient”. It’s commonly taught that if we listen to our patients, they’ll tell us what they have. However, I know I’d prefer someone saying “I think I have _fill in the blank_ because I have the following symptoms….” than to say “I have _fill in the diagnosis_”. Many disorders have similar symptoms and might be easy to confuse, though many times a patient will be correct, at least with more common or well known disorders. Often I’ll ask a patient why they think they have a particular disorder, as on occasion they will dismiss a symptom that might indicate a different disorder, or be so focused on the diagnosis and the need for particular treatment that it can be a challenge to convince them that something else is wrong or they don’t need treatment. A good example is someone coming in saying that they have “strep throat” and “need an antibiotic” when only a minority of people with a sore throat will have strep throat and a minority of those (I believe it’s only about 1-5%) of adults get complications and all antibiotics are doing is shortening the course of symptoms.

On the other hand there is nothing wrong with looking things up before you go into see your doctor and asking questions.

Anyhow, I hope some of this is helpful to people. Some of the recommendations have been written about elsewhere. If I could recall where I’d be glad to attribute them. If there are other things that come to mind that fit the description of this post, I’ll put them in a part II.