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.