End Stage COPD: Why You (and Everybody) Should Have a Living Will
Dr. Rajani, a tiny lady no more than five feet tall, shook my hand, looked me in the eye and said, "Your father is a very sick man. His body is shutting down. Do you want us to put him on life support or should we make him a no code?
“Can we see how it goes?” I asked.
“You have to make a decision - soon.”
Not exactly what I had in mind for my first meeting with this doc and certainly not the best way to begin a discussion on end of life issues
My sister had called me the night before saying that Dad was in the hospital with shortness of breath but after getting settled in and being put on two liters of oxygen, he was feeling more comfortable and doing better. But the next morning, Mom called me at my hospital job in Michigan, saying, “Dad’s taken a turn for the worse and they say he might not make it. I need you here. You understand these things.”
You see, as Dad got older, my sister and I had urged him to talk about what he might like done medically if he were to be unable to speak for himself. But, stubborn Dutchman that he was, 80-years-old at the time and more obstinate than ever, he refused. Now, here we were. Inaction on Dad’s part had put all of us - my mom, the doctors, my sister, and me - in this terrible, and most urgent, situation.
Believe me, you don’t want to find yourself in this position. The good news is that you don’t ever have to. I want to help you and your family to avoid what we went through. Let’s talk about advance directives, appointing a patient advocate and living wills.
What is an Advance Directive?
An advance directive is a document - made in advance - saying what you would like done, medically, if you should be in a situation in which you’re unable to speak for yourself. An advance directive allows you to make your own decisions, and maintain your dignity, so that others don’t decide things for you. Telling your loved ones your wishes is a good first step, but it is not enough. You must have it in writing.
What is a Living Will?
A living will is a legal document in which you make your wishes known regarding life prolonging medical treatments. A living will should not be confused with a living trust, which has to do with holding and distributing your property and finances.
Who should have one?
Every adult should have a living will, even those who are young and healthy.
What is a Durable Power of Attorney for Health Care?
This is the appointment of a patient advocate, one or two people you have chosen, to speak for you if you should be unable to speak for yourself. This could be a spouse, an adult child, or someone else you trust who is willing and able to take responsibility for carrying out your wishes.
How do I start this discussion? Isn’t it morbid and depressing?
Nobody likes to think about dying or losing a loved one, but we’re all going to die sometime and when we do, it should be on our own terms. Begin by assuring your loved ones that bringing up this subject doesn’t mean you’re planning to die anytime soon. Take a positive approach - you’re doing this to make sure your dignity is upheld and your wishes are carried out. Remind them that if this time should come it will be a lot easier on them if your wishes are known in advance.
Should I talk about this with my doctor?
Yes! Bring it up at your next appointment, or make a special appointment for this purpose. It’s shocking to know that a study done at Island University Hospital in New York revealed that 83% of patients with advanced COPD had not discussed end-of-life wishes with their physician, although 78% said they wanted to. Talk honestly with your doctor about options that are right for you and the state of your disease.
How do I get started?
Your local hospital should have forms that are legal in your state, and they may have a social worker to assist you. A lawyer can also help you. There are many resources on the internet. Just make sure that documents are legal in your state, as laws vary from state to state. Legacy Writer https://www.legacywriter.com/
You might be wondering what happened with Dad. Well, after ten days in the ICU, he pulled through and lived for nearly two more years. He became well enough again to see grandchildren get married and graduate from college and high school - and he even went back to work part time. In that time he made it clear to all of us exactly what he wanted should he ever get that sick again and be unable to speak for himself. Finally, when he had no fight left in him, he passed away quietly with no tubes, no machines, and no pain - with family at his side. Yes, it took a while for a proud man to talk about end of life care but we’re so glad he did.
Jane Martin is an accomplished respiratory therapist, author and founder and director of Breathing Better, Living Well.com. She wrote for HealthCentral as a health professional for COPD.