If there’s one thing more terrifying than awaiting a diagnosis or hearing that your loved one has been rushed to the hospital, it’s hearing that they are in the ICU.
ICU treatment involves maximum invasion: breathing machines, catheters, artificial hydration, a tracheostomy and tube feeding, maybe even a heart-lung machine. Post-ICU recovery often involves therapy to overcome the terror of being at the mercy of machines, often unable to do anything or say anything about how we feel or what is happening. This is one reason many people prefer hospice.
But whether or not a stay in the ICU is a last-ditch effort to keep someone alive and whether or not it succeeds, there are things we can do to help – and there are things we can do for ourselves in case we wind up in the ICU.
A Medical Power of Attorney can appoint someone to speak for us when we cannot communicate. By attaching a letter outlining what we want, what we value, we can reassure the person we name to speak for us that they are making the kind of decision we would make if we could. Accompanying a Medical Power of Attorney with a HIPAA Information Release Form will let the doctors share information, letting the person we name get the big picture.
An Advance Directive to Physicians, which overrides a Medical Power of Attorney, lets us decide in advance what we want if we are in a permanent vegetative state or if, even with medical treatment, expected to live no more than six months. It could be a simple “no heroic measures” decision or not. We could decide that we want some things but not others.
But what if it is our loved one who is in the ICU? What if he or she has not signed a Medical Power of Attorney and is in no shape to do so? In Texas, if there is no Medical Power of Attorney, health care providers are to turn first to the spouse and, if there is no spouse, then to the available adult children. (Understanding how easily this could lead to disagreements and bad feeling among children should prompt most people to sign a Medical Power of Attorney naming one of them, with others as back up, and attach a letter so that they all know that a decision is in line with what the parent wants.) If there is no spouse and there are no available adult children, health care providers should turn to parents. If they, too, are not around, the health care providers should turn to siblings.
7 things you need to know
1. Have someone take notes when you’re meeting with the physician and nurse
If you are the person involved, you will need good information and good communication. The two go hand-in-hand. Meet with the attending physician and the nurse, preferably together and preferably with someone else who can help you take notes. Having someone in the ICU is stressful. It is easy to blank out or forget something which was said. Write it down.
As the hours pass, share your thoughts, fears and questions with the nurse. You may be tempted to check things out on the internet. While WebMD and the Mayo Clinic websites can be helpful, remember that each individual’s situation is different. Consulting specialists address a particular condition as it is affecting a particular person. Your loved one’s primary or attending physician and the nurses are dealing with your loved one’s overall situation, not some average or general progression of one condition or another.
2. Ask questions
Ask questions before agreeing to any procedure. Ask for an explanation of any medical jargon. Ask questions as you observe changes. Ask how something will affect your loved one’s quality of life. Ask whether a breathing machine or a tracheostomy and/or tube feeding will be permanent and, if not, how long it is expected to last. Ask what is the next step. Will the person be weaned off the ventilator? Will they be transferred to a nursing home? Are they expected to live the rest of their life in a nursing home? What degree of recovery can reasonably be expected and over what time period?
3. Write it down
Write down the answers. They may prompt you to ask more questions now or after you have thought things through.
4. Processing information takes time
Take time to process this information. It can be hard to think things through when you are overwhelmed by emotion.
5. Take time to understand the situation and outcomes
When you understand the situation and the possible outcomes, take time to think through those and anticipate what you might have to address next. Remember: not all of the imagined possible outcomes will actually happen.
6. Look for signs indicating your loved one is in pain
Be sure that your loved one remains comfortable. Speak up if you notice signs of pain.
7. You need rest
Be sure that you get enough sleep. Go home at night. Be refreshed so that you can convey information and ask questions the next day.
Estate Planning attorney, Terry Garrett, is a member of the National Academy of Elder Law Attorneys and is active in the Texas and Austin Bar Associations. She graduated with honors from Cornell University. She was on the Dean’s List at Wharton Business School. She earned her J.D. at Columbia Law School, receiving the Parker Award and a Mellon Fellowship.
She assists families of people with special needs, people planning for the retirement years and people administering estates.