Once upon a time I was a sweet young and enthusiastic Student Nurse. I wore a crisp white top and pleated navy bottoms. I carried multi-colored click pens and several highlighters on me at all times. I always wore a white wristwatch, polished my white clogs after each shift and carried a $200 stethoscope.
Then I lost the stethoscope.
Then I lost a few more stethoscopes.
Please don’t even get me started on the pens.
On one of my clinicals I was being trained by a really nice nurse. It was 2004 and the nurse to patient ratio on this Medical Surgical Unit in this city hospital was 8:1. Usually the staff nurses were grateful to train and loosely supervise the student nurses because it meant two less patients for them to worry about. Back then the nurses hand wrote their nursing notes and I vividly recall my shock when I happened upon a note that began and I quote, “then the patient had the balls to tell me…”
I don’t remember the rest of this nursing note.
Anyway, Nice Nurse told me to go see if my patient wanted to get washed up. I grabbed all of the necessary supplies, the washcloth, the bath basin and the unscented soap, and was nervous as I set out to complete this assigned task. The man was what we call a hard 50, give or take a decade and happened to be paraplegic. I did what I was told and asked him if he’d like to get washed up. He said sure and well, I put my whole heart and soul into this first sponge bath.
At the end of this sponge bath, the man gleamed and I was quite proud of the job I’d done. I returned to the nurses station and told Nice Nurse that I had completed the full bed bath. She paused for a second before she began to laugh uncontrollably. After she stopped crying she told me I needed to listen carefully, ask more questions and be more specific because that man washed himself every damn day. Nice Nurse only meant for me to fill the basin with warm water and hand him the washcloth.
So began my quick descent into becoming a suspicious and jaded nurse. I remained suspicious and jaded for about 10 years and at one point I was mostly certain that I possessed every answer to every question.
Here’s the thing... I have no answers. I have only information that I can pass on to you.
Almost 20 years later I enjoy a high level of autonomy and this is one of the four main ethical principles of nursing. This ability to make independent decisions about a patient’s care and my decisions are based on years of my experience, knowledge, training and critical-thinking skills. All of this combined with a fantastic sense of humor and some very well-honed nursing instincts, have made me into the Critical-Care Nurse I am today.
In America, the patient also enjoys a high level of autonomy. My role is to ensure the patient or their decision maker has received the information they need, in order to make their own decisions. The decisions that are right for them. Then my role is to respect those decisions.
This is what I would like for people to understand.
Family members often ask me what I would do if I were in their shoes. Meaning a really tough decision needs to be made and they want to know what I would do, if I had to make this tough decision for my own family member.
Once upon a time I would never divulge what I would do in their shoes. Now I simply tell the truth. The truth is I have no idea what I would do. Of course I would like to think if the day comes where I need to honor my parents wishes and after a respectable, read: super short, length of time, quickly pull the plug on any unwanted artificial life support, I will be able to do this.
But I truly don’t know.
Sometimes people end up on unwanted life support. Sometimes people living with terminal illnesses end up in car crashes and their loved ones find themselves making a decision they were preparing to make in the next few months a little sooner than anticipated. Maybe the terminally ill loved one really wanted to be here for the upcoming Christmas Holiday or their 100th birthday.
These are examples and by the way the 100th birthday one, is a true story.
Who am I to say what the patient would have wanted?
I’m not, but if you’re the next of kin or the designated healthcare proxy/power of attorney, well then you are the one to say what the patient would want.
When in the hospital people usually receive information from about 83 well-intentioned healthcare providers, give or take a few. I always overhear a lot of people say they are waiting for the doctor to tell them what to do next. Most doctors are not going to tell you what to do next. They are going to give you information, usually present options to you and the decisions are usually yours.
Please ask questions then ask more questions. Bring a notebook and write down your questions or type them in your phone or whatever you need to do to pay attention and somehow keep track of all of the information you are being given.
A few months ago, I sat at my kitchen table with my parents and went through the long list of options presented on a pre-printed Advanced Directive for Healthcare form. My parents live in a different state and their state uses a standardized form, but this form was 12 pages long and very complicated. I instantly understood why people are not filling out this form.
I do know my parents very well and by the way, today is July 1st and it is their 52nd wedding anniversary. So Happy Anniversary Mom & Dad!
This is my favorite photo of these two lovebirds—
We sat at my table and this serious meeting went exactly how I thought it would go. You do start to predict the future after a few years in nursing. My father skimmed the papers, looked at me and told me to do whatever I want to do if he ever becomes incapacitated. Now my father doesn’t think I’m capable of changing my clocks back or forward without him reminding me, but he does trust my professional nursing experience.
My father knows I am usually going to do what I want and if he happens to die first, he knows I can battle my mother and honor his wishes. My sister was not present for this meeting. I invited her to come over to talk about the decisions, once we had discussed the options because my parents and I agreed her presence would only make the process even more complicated.
Trust me, it’s a lot easier to know your family and know what you’re dealing with.
Now filling out this form with my mother was a completely different story. We went through each of the end of life options of the Advanced Directive line by line and she had a lot of great questions. Like why would someone want a short term feeding tube or a blood transfusion if they had little hope for a meaningful recovery? Well, blood transfusions can be life-saving, but often they are given to alleviate uncomfortable symptoms like shortness of breath or fatigue. It is possible to minimize suffering when still dying.
Further if someone’s ability to eat has been temporarily affected by a stroke, a feeding tube can be appropriate and used for a few weeks while the brain tries to recover. If this happened to one of my parents, I would be open to placing a feeding tube for short term management of dysphagia. However once that feeding tube goes in, it is then a massive dilemma to take it out if the hoped for recovery doesn’t happen. I personally would think long and hard before I made the decision to go this route.
I know my mother says she doesn’t want any heroic life-saving or sustaining treatments, but really it’s far more accurate to say that she doesn’t want any overly life-saving or sustaining treatments done to or for her when the end comes.
There is a big difference.
The answers you seek are yours and yours alone. This is the beauty of choice, freedom and autonomy and in all but the rarest of cases, you will be presented or faced with many choices.
My best advice is for you all to live your life in a manner that when the end comes, and it will come for us all, your loved ones know you so well that they will know in their heart what you would want them to do.
You will have spent so much time with your loved ones that there will not be a single regret found on your deathbed or anywhere in your hospital room.
You will die at peace, knowing your life was lived to the fullest and every single person you loved, will walk out of that room at peace because they know with certainty how much you loved them.
P.S. As always I would love to hear your questions. Thanks for being here!
Such an important topic. My Mom ended up with alzheimers and I had to make an awful lot of decisions. I do wish we had talked more about wht she would have wanted.
Thanks Kristin, for making the point about respecting patient’s wishes. My father spent 10 years in a nursing home with dementia. I remember the conversation about signing the directive, he was still in denial about having the disease, so l asked him if he wanted the government or me to make decisions when he couldn’t, so he signed. 🤣My partner died at home from MND, l thank whatever ‘powers’ had him be able to have his mental faculties despite the fucking horror of watching someone become a prisoner in their own bodies. At one stage l remember a local GP telling me he might have to go to hospital. Thank god for his palliative nurse who on a visit told me that they can’t force him to go to hospital against his wishes and that palliative nurses look to the people who are caring for them. She is an angel and she empowered me to care for him, both emotionally and practically, at home, otherwise the system would not have respected his wishes. So, hooray the system needs warriors like you … angels without wings is what you are. I developed a friendship with Catherine and still see her. I am forever grateful for the care and connection she made with John and l. My mother was also fortunate enough to die at home, her wishes weren’t respected. She wanted to die at home and the hospital didn’t want to release her. It took me a week to get her out of the hospital (she had been in for 3), she made it home for the weekend and died in the Monday night while l was holding her hand, as she wanted! The palliative nurse who came to our house once a week while John was ill told me they wouldn’t have wanted Mum home because of the ‘bother’ of doing all the paper work etc when they knew she was about to die. So, the Australian health care system is flawed too. Thank you for your engaging writing about such important topics and for your down to earth approach … and clearly, the care you give to your job. And thank you for hanging in there.