Monday, November 4, 2013

Have The "Talk"

Updated 11/6/13
I am not referring to the "Birds and the Bees" talk we have with our young children although that one isn't always easy either. I am referring to having the end-of-life talk. I see many of you quickly moving on to a different website. But wait. Stick around. I know this is hard. It is rough writing about it as it is having the TALK.

You can talk about end-of-life issues before someone is ill or they are moving into an assisted living or need extra care at home but it seems in our society that doesn't happen very often. I think very few people feel comfortable because it hurts, no matter which side of the table you are sitting on.

Since my first surgery back in 2005 I have had an Advanced Directive. An Advanced Directive is a legal document that will provide your medical team with your care preferences if you are no longer able to make those decisions. In NJ there are two parts to the Directive, a Proxy Directive and an Instructive Directive.

The Proxy Directive, also known as the Durable Power of Attorney for Healthcare,  allows you to appoint a person to make medical decisions for you when you can't make them yourself. This can be temporary or long term and goes into effect only when you are not able to make the decisions yourself.

The Instructive Directive, also known as a Living Will, is a document that tells your health care team and your family what life-sustaining treatments you want or don't want under different conditions. Life-sustaining treatments include any device or procedure that would extend your life by taking over the function of some body organ. The treatments can include surgery, a ventilator, drug, therapy or providing fluids or nutrition.  Again, the document goes into affect when you are not able to make the decisions yourself.

Why am I even mentioning these documents? These documents are a good place to begin the discussion about end-of-life issues with your family and to get you to think about what you want to happen. I am a bit of a control freak so I worked out in my mind what I wanted to do before I spoke to my family. I hope it makes it easier for them and my health care team when the time comes. It is also a burden I don't want them to have to carry or feel guilty about later on.

Who do you trust to direct your care when it comes to health care decisions? Is that person comfortable being your health proxy? Ask them. And be sure to discuss with them the situations you may face and make them aware of the times when you want life-sustaining treatment or situations when you don't. I have a second proxy lined up if my first proxy for some reason can not make the decisions at the time I need them to be made.

Now think about under what conditions you want life-sustaining treatment. What treatment do you want or not want if you are permanently unconscious? What treatment do you want or not want if you are terminal? Do you want a treatment if it will only prolong imminent death? Or do you want a treatment if it may be ineffective? Or if your condition is irreversible and the treatment may have little benefit do you want the treatment ? You can even pick and choose treatments under different conditions . For example, you want fluids and nutrition but not surgery.

You don't need a lawyer to fill out these forms. Many are available online.  Make sure your family knows where your documents are located. You can always update the directive at any time for any reason. Just make sure you and your health care team are working with the most recent document.

If you live in NJ take a look at this site for more information and copies of the documents you can print out and fill in.

Additional information on end-of-life and palliative care may be found here on the CancerNet site.

I know the talk I had with my husband back in 2005 was not easy but I feel better knowing I have a plan in place.

Every Day is a Blessing!


Ann Becker-Schutte, Ph.D. said...


I am so grateful that you posted this. Encouraging each of us to think about end of life wishes as well as having "the talk"--early and often, is a primary goal of the #EOLchat tweetchat that I moderate on Monday nights. Thanks for sharing your own perspective, and the fabulous resources!


Linda said...

This is a difficult but important topic. And one that we all need to consider. Thank you for focussing attention on end of life decision making and discussion. My mother, who is in remission from ovarian cancer, has also gotten very interested in these issues and educated me as well. I want to support her and my dad to make sure their wished are followed...

Nancy's Point said...

This is such an important topic. As a whole, our society does not like to talk about end of life issues for various reasons. Just because things are hard to talk about, doesn't mean we still shouldn't do it. Thanks for taking this bold step and writing about it.