Nursing is just not a profession. When you decide to pursue nursing, you are taken on an unimaginable journey of discovery, heartache and wisdom. The path you begin walking changes its terrain with every step forward. When I come home from work, I am stepping back into my life in an alternative universe. While this seems strangely detached, it is a way of coping; a way of mending before my uniform and I meet once again.
The wrath of sickness is powerful. In fact, it is unimaginable. As a nurse you meet people on the absolute worst days of their lives. However, you become an invaluable guide as you navigate the crumbling pieces of your patient’s life. One of the things I’ve learned from my experiences in the ICU: Even when faced with the hardest truths, people do not like to address illness, death, or what ifs.
While we fight it for as long as we can, death can be a kind and forgiving friend. However, uncertainty and love obscure this fact. The uncertainty, the unknown, is something we need to fix. So many people never wanted, or thought, to ask the wishes of their family members before they fell ill – especially when they are young. It is an incredibly hard conversation that you need to have with your loved ones – because I know that this knowledge can give a terrible situation a sense of peace. It is nearly impossible to be someone’s voice and operate with extreme certainty. That is a burden you do not need to bear.
So, while we are all at home, I desperately ask that you have this conversation with yourself and your loved ones. Don’t want to talk about it? Write it in an envelope, sealed, in a safe place everyone will remember.
Who will be your/your loved ones voice?
Who is the person you want to make choices for you when you cannot. Usually, this falls on next of kin. However, you want to make sure the spokesperson is someone that will follow your wishes, even if they disagree. This is extremely important. You can make this official: In the state of Massachusetts you can fill out a health care proxy form here.
The kind of medical treatment you want and do not want
Sometimes, “doing everything” is not what is seems. Many procedures are painful and risky. I promise that every time a patient rolls in the door, we do our absolute best to help their ailments. However, sometimes not having the invasive procedures can be the right choice too. Many people struggle at this stage of illness because they do not know what their family member would want. This transitions to the nest big question:
What does quality of life mean to you?
What do you find enjoyment in? Do you like being social? Are you a foodie? are you a movie buff? Are you an extrovert/introvert? If some of these things were taken away temporarily or forever, would you be okay with it?
- Would you be okay with having a ventilator help you breath for the rest of your life?
- Would you be okay having a tube to feed you if you could not eat for yourself?
- Would you be okay with someone helping you go to the bathroom?
- Would you be okay living (long term/forever) in a facility so that you could get the care you need (i.e. a ventilator)?
Have a contingency plan
If you have a family, children, a business – this is non-negotiable. I’ve met patients trying do work while struggling to breath, because they didn’t want their families to worry about it. When you or your loved ones are struggling for your life, you shouldn’t need to think about account passwords, signing off on business deals, or getting a living will in place.
What would you want in your end of life?
This is a big question. The shallowest dive into it is: what are your wishes for a funeral arrangement? When you go a little deeper, this can include: How comfortable do you want to be? What do you want your family members to know about your illness?
No one expects the wrath of illness to greet them. Many times it is unexpected and cruel. Let truth and knowledge empower you on the worst day of your life.
Stay safe and stay home,
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