Tracy Gardner / Jess Sinclair
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When Hope is Lost

1/16/2015

5 Comments

 
This is not a post about writing. It’s not written by a writer. It’s written by a nurse. It’s written so I can lay this down and move on.

I promise a return to my typical upbeat musings in the next blog entry, rest assured. This is something I feel needs saying, for anyone who works in healthcare, and yes, I am using my author platform to say it.

There’s a painful, brutal truth about working in the medical field. It’s something we know but just don’t talk about. It’s something I’d rather not know, if I had that luxury. If I wasn't a nurse, if I’d never lost someone I loved to illness, I wouldn't know this truth, and I’d be happy not to know it.

Hospice is a bad word. I used to believe that. In 20 years as a Registered Nurse, I've never been able to overcome this idea. Now I know that Hospice is a bad word until it’s not. Then it’s the most beautiful word.      

I've tried my hand as a Hospice nurse. I suck at it. At my core, in my most basic default settings, I am a hopeful person. When interacting with my patients, I tend to offer hope whenever I see the opportunity. Frequently, it's small consolations, like:

“The pain medicine will kick in soon.” Or, “Maybe your Neurologist will have a good solution to this problem.” Or, “Your lab values look a little better this week.” 


The hope is never false, even when it's a small consolation. It's something I can't seem to help, offering a grain of hope. Even when it might be better not to.

Before this week, my own experience with Hospice only reinforced my negative perceptions. Listen up, healthcare professionals. You cannot say that word to a patient or family member immediately after telling them there is no more hope. It’s gone. There is nothing else to try, nothing else to be done, and this life will soon be over. 

Think about that for a moment, the impact. Then imagine (or better, don’t, just take my word for it) the word Hospice being spoken. While you’re still digesting that worst of all possible news.

It’s inconceivable to think this one person, this person with the title Doctor, is right, and to accept it at face value. To let go of hope, and in the next breath agree to Hospice care. Even in a very long, painful, chronic illness and decline, I believe we need a minute. Or a few hours or even a couple days, if we can afford that. To try to wrap our minds around the truth of this, assuming it’s true.

Only then does the word Hospice become the word we want to hear. It’s that point in time when the only thing left to hope for is peace. Calm, releasing, pain-free peace. Hospice makes that possible.

That point in time came for a patient I took care of for over two years. After several conversations with the doctor, I'm grateful I had the strength to speak the truth, to be honest and confirm what the family already feared was true: all hope was lost. And now my job was finished; I could be of no more help. When the patient was ready, Hospice would carry him comfortably through.

There is no dignity in dying. There is only the hope for a peaceful end, surrounded by those we love. Hospice is no longer a bad word for me, not when it’s used the right way. And a good Hospice nurse is an angel in disguise.

I can count on one hand the patients I’ll remember for the rest of my life. In 20 years as a nurse, I've given very few the power to actually affect me, hurt me, and sometimes heal me. The one I lost this week, and his loving family, did all three. 

5 Comments
Rocsana
1/16/2015 01:59:45 am

Shadows of feelings...., shadows of moments..., shadow of smiles....., shadows of hope...., shadows of faith......
Shadows are not visible...., but sometimes they just hurt us to the tears. All of them!
All shadows hurt....All shadows bring us tears.
All , except...feelings.
All, except those memories of moments.
All, except...smiles.
All......, except hope!!!!!
All, absolutely all, except.......faith!

Reply
Tracy Gardner Beno
1/16/2015 02:16:17 am

Rocsana, you're a poet. Very true. Thank you.

Reply
Karen
1/16/2015 02:00:39 pm

I was the only family member present when my mother in law, Marion, was given her cancer diagnosis, by a doctor she had just met a few days before. He was very direct in presenting the news....he then told her she would be given Hospice information and he left the room. We just stared at each other. We took her home and Hospice came , she passed 3 months later. There never was the opportunity for "Hope" . In her case, Reality replaced Hope and I could see relief in her beautiful blue eyes , as she had been suffering and didn't know what was wrong..... The word Hospice gave her permission to talk openly about leaving us., It was going to happen. You are so right about it being an awful word...until it becomes the most beautiful word. I still think of those Angels who helped our family provide a very calm and peaceful , leaving, for our loved one.
I'm sorry for your loss ,Thanks for sharing this. Karen

Reply
Tracy Gardner Beno
1/20/2015 11:02:48 pm

Thank you Karen. I'm sorry you also know about Hospice. They must all be angels.

Reply
Kathleen Overton
5/16/2016 11:29:25 am

This is one of the best things I've read you've ever written. I don't know how you do it. But I agree, hospice is not a bad word. Dying is not for sissies, neither is getting old and watching your body falling apart as I watch my Mother struggling with this very problem. I had the experience of having my body "fall apart" at a young age- 57. I can't say I never lost hope but I always had faith that God was with me every step of the way. Either way, whether I died or healed I was with God. It took many years of chronic pain before my back was finally fixed and I finally truly have hope for a few more years (I hope!!) of doing things I enjoy. I can empathize so well with what my Mother is going through at 95 years old because of my own experience of having my body be so broken. I've been given another chance she won't have. Her blessing is she's had a long life filled with good health along with good and bad times - whether she feels that way or not I don't know. I hope she can stay at home, but if you have the right hospice care, it can be a beautiful time of transition to finding final peace. I hope your patient is taken care of with the same loving care you gave them until it's time to say goodbye.

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