August 16, 2011

Making choices.

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?

5 comments:

Doug said...

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Sue T said...

Let me start by saying how very brave I think you are to take on this project Words are the food of our wisdom Having gone through this with my Mother who much like you wanted the prognosis not the sugar coated version there were nights when I thought lets just sit and be together but she wanted to make sure all the arrangements and details were taken care of She understood that it would be so much easier on me one of the most revealing conversations we had was that she was so sad that she would not be there with me because it would be so hard on me She knew that I would need her. This would be the first time I would not have my mothers support.. I don't think both of us realized just how wrong we were. I felt my mother with me as every detail was checked off the list we had spent so many nights preparing. 31 years later she is still with me in every major decision I make, in every rose I see in my garden planted in her honor and in all her grandchildren and now great grandchildren The term Life ends I have a hard time with, we keep the loves we have known in family and friends very much alive they are part of heart and soul still living with us.

Doug said...

Thanks Sue. It's so important to think about life after. I think about that a lot and plan to write something on that further down the road.

Anonymous said...

Since my Dad passed away (in hospice, a decision my mother celebrates to this day), we feel his presence in so many small ways. The things he taught us to do, that we now do, are a direct connection to him - and full of love & gratitude! The special days he brought flowers, and the kinds of flowers, we now buy each other to remember his kindness. The activities he loved - are like doing them with him, when we do them now. A book he inscribed that you pick up randomly off a shelf- and then he's there. SOmetimes with tears, but always with love & gratitude for all he did, was, gave, & taught! ... as well as more physical, intimate, details. We still love & remember his body at different stages of his life. So I keep being surprised - NOTHING is lost! Well - maybe the cranky moments. Right now I can't think of any. Thanks as always for your wise thought-provoking blogs. Thanks for the comment about a mother planning her funeral, too. Following this blog will make me feel much more prepared than I could ever have been if my own time here is given an exit date.

Anonymous said...

You are so right Doug! When my mother had her only heart attack and was being kept alive artificially, the doctor came in to give us the news, including the fact that she was on life-support and would likely have no chance of recovery beyond a "constant vegatative state". (Even though it is over 9 years ago, I recall that term as if I just heard it yesterday.) The doctor asked us if we knew how she would like such a situation handled - would she want to be kept alive artificially with no hope of meaningful recovery? I immediately answered that I knew she would not, because she had done me the favour (honour?) of telling me so some years before. My sister and brother were in the hospital room also and both emphatically agreed - individually my mother had had the same conversation with them! Though we were sad about her impending death (she died two days later) we were able to move forward with a clear mind in making preparations in knowing we had abided by her wishes - which in turn allowed us to be as positive as possible in celebrating her life.

Thank you for your words - having been in this situation the wisdom of this message is self-evident.

Russ