I just finished reading a great book called "DNR - Real Stories of Life, Death and Somewhere In Between" by Lauren Jodi Van Scoy MD. I didn't know what to expect, but the real life stories were extremely powerful and made me think about choices - the choices we make and the choices people make for us - and how important this is when you are faced with a deadly disease.
The first choice you make is whether you want to talk about what's happening to you and who you want to tell. In my last post, I wrote about how important it was to talk about it, but it's up to you to make the decisions about when and who. Your family should always come first and, for some, it may go no farther then that. But most of us have friends, co-workers, acquaintances or others who should probably know sometime but it should be left to you rather than an email blast from a well-meaning friend who likes to be the first with all the juicy gossip. We all know people like that, but this is pretty personal stuff, so it really should be you. Once you've told others, let them decide when they feel comfortable talking to you about it. Some people may not be able to because it upsets them too much and that's okay; that's their choice. They will find a way to express themselves when the time is right for them.
The next choice is a big one. It's the choice I had to make whether to continue treatment or to stop. For me it was all about quality of life, and I've written plenty about that. I just want to make it perfectly clear that this is not a choice between fighting and giving up. I have fought this disease long and hard and I have many more battles to fight before it finally kills me. I have just decided to discontinue optional treatments that cause me to have severe side effects with no chance of cure and it was the right decision for me in my situation. It may not be for others. Others may choose to try anything they can get their hands on, hoping for a miracle. They may call that fighting, but it some cases it may be a form of denial (see my July 25 post for further discussion on this). But it's their choice and no one else should be making it for them or pressuring them one way or another. Whether you choose to fight aggressively, to accept that there is nothing you can do, or to live in denial, I wish you all the best.
There is a very important wrinkle to this that needs to be discussed (I've seen a number of blogs on this recently), and that is the role that doctors play in the decision making process. While doctors don't and shouldn't make the choice to continue treatments in general or to undergo specific treatments, they have a great influence over patients and their families. Many doctors and other health care staff don't like to tell people that they are going to die, either because they don't like to be the bearer of bad news or they don't want to be responsible for dashing all hope. Or maybe they themselves are hoping that the next drug or surgery will work, or the next one after that. Well, I don't want false hope and I don't think anyone should be given false hope, especially if it means spending your remaining time in misery. These are critical decisions affecting a person's remaining life and they should be given all the information available so they can make the choice themselves. Doctors should be compassionate but factual. We patients need to know the numbers, the risks, the alternatives and the implications for our particular situation (as opposed to averages from clinical studies) so we can make the choice that's right for us. Even if it ends up killing us sooner!
Most importantly, there are the choices around end-of-life care. While we are still of sound mind and can communicate, we need to decide how we want to be treated when it gets near the end. Do we want to be at home or in a hospital or hospice? Do we want emergency or palliative or hospice care? Do we want to be kept artificially alive on machines? If our heart stops, do we want CPR? Who do we want to make any final decisions for us if we are not able? These are critical choices that should be made by us and not by doctors and nurses who have no idea what we want and therefore have to do whatever it takes to keep us alive as long as possible. It's not fair to us and it's not fair to them. So I strongly urge everyone to look into living wills, power of attorney for personal care, DNR, etc. and talk to your family so everyone knows what you want to do. We all want and deserve a good death, not one surrounded by questions and confusion where our loved ones are forced to make monumental decisions that they're not prepared for.
And finally, there are the choices that you can make in advance about whether you want to be cremated or buried, where you would like to be buried or have your ashes scattered and what kind of party, wake, funeral or celebration you would like for your family and friends to remember you. These shouldn't be difficult and, if they are made well in advance, they shouldn't be upsetting. Once again, you can ensure your wishes are carried out and save your loved ones from making decisions in the dark. Let it be your choice.
I really don't want to make any specific suggestions in this post. I just want you to think about these important things in advance and make the choices that you want to make. Don't make your family, your doctors, or anyone else try to guess what you want. It's not fair to them, it adds to their grief, and it takes away from the celebration of your life, which is what it should be all about.
I know what I want! Do you?