Sadly, I can’t say I remember my first code or even the first death I witnessed. Unfortunately, there have been so many over the years. Not to minimize any life that has crossed my path, but after 16+ years, it does all start to blend together. There are a few who stand out – but I will save their stories for another day. However, each experience – each life – has been a small part of my molding – shaping who I am, teaching me a lesson. And those lessons I try to pass on.
We rarely talked about death in my nursing program – the model for our nursing school was based on restoring people to their highest level of functioning – death doesn’t always fit into that equation. So, when I came out of school, I was clueless. In my personal life, I had not had anyone close to me pass away, so I really didn’t even have that frame of reference to draw from. However, working in critical care areas – I had to learn quickly!
One of the areas in nursing school I often find students (and many staff nurses) continually confused is regarding end-of-life decisions, DNR, and now allow natural death. Although state laws typically dictate who and when these decisions can be made, there are few “constants” that are true across state lines.
So, here are some lessons learned along the way about end of life decisions:
- We have to feel comfortable about the topic first – if we are not comfortable with the reality of death, then we certainly won’t feel comfortable talking with our patients. Unfortunately, in our American society, we don’t like to admit that no one has evaded death. It is taboo and considered impolite. We have to start with our own thoughts and feelings about the topic before we help others.
- Every decision starts with a conversation – we can’t be afraid to discuss end of life decisions with people. As time goes on, it becomes even harder to broach the topic, especially with our loved ones. Asking about a patient’s code status starts the conversations, opens the door and allows them a safe place to ask questions. The conversation is CRUCIAL!
- It doesn’t matter what paper is filled out if the person appointed can not carry out the wishes – this is why the conversation is so crucial. If the person a patient (or yourself) wishes to appoint to make medical decisions for you can not fulfill them, then they are not the right person. When push comes to shove, they will override your decisions “on paper” and the law will support them. As one wise intensivist once said, “It’s not the person in the grave who will come back to complain or sue us, it’s the person who is left to make the decisions.” Sadly, I have repeatedly seen patients’ advanced directives not honored. However, on the flip side, I have witnessed great bravery among family members who upheld their loved one’s decisions, even though they did not agree.
- Families at the end of life need huge support – again, we can’t let our wishes become their wishes, as hard as that is sometimes. As the nurse at the bedside, we witness horrific suffering and often are powerless to do anything about it, except follow their wishes. Again, these families still need our support, not alienation. And for those brave family members who struggle with saying good-bye, that same wise intensivist taught me these great words of support for families, “You are not speaking for them, they have already made their wishes known and you are just letting us know. This is not your decision, it is their decision. Thank you for honoring their last wishes.” No one wants to go home with the burden of “pulling the plug” when in reality, they didn’t. Help them see that.
- Please talk to your family – let YOUR wishes be known – April 16 is designated as National Healthcare Decision Day. This is a day to start the conversation – decide who will speak for you when you are not able! But don’t wait until the, start the conversation now – it’s one of the most loving things you can do! You can learn more about advanced directives here.
I could go on and on about this topic – I am very passionate about it. But, I write this with a sad heart tonight as my dear friend sits by her father’s side in hospice. Thankfully, they were brave. They had those tough conversations, but it is still not easy saying goodbye. However, some of the pain is blunted knowing they honored their father’s wishes – they had the conversation.
So, don’t delay. No day is promised. However, do the loving thing and make those decisions for yourself so your family isn’t stuck wondering what you would have wanted….
Take care, be safe and wash your hands!
Until next time…