When My Alcoholic Uncle Died: And How It Impacted Me as a Nurse

When My Alcoholic Uncle Died: And How It Impacted Me as a Nurse

When My Alcoholic Uncle Died

As many of you know, I am a huge fan of Tumblr. I follow many nurses, physicians, EMT’s, nursing students, and other healthcare professionals. I am a fan of the short posts with great images and rarely sit down and read long posts. However, when I started reading this nurse’s post, I simply couldn’t stop. My nurse heart just connected with this nurse, niece, and patient. Many people suffer from addiction to alcohol, and arguably most nurses will find themselves taking care of someone with this particular affliction at some point in their career.

This following is a guest post, written by a nurse who walked through this experience herself, and obtained permission from all involved.

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I had an uncle who was a terrible alcoholic. It ravaged every aspect of his life, his work as a union tradesman, his ability to be a father or husband and his relationships with his brothers and sisters.

My mom and I often visited him when he’d get admitted to the floor. I could never bear to see him in the ER. Dirty, belligerent, withdrawing in the DTs.

I was embarrassed because I knew he was a frequent flier.

I was embarrassed that I was embarrassed.

We tried to drop him groceries and buy his Dilantin every month, but he moved around a lot, mostly renting rooms above taverns. He wanted nothing to do with sobriety. He used drugs when he could, but whiskey was his poison. In the end, he only tolerated a few beers a day to keep away the shakes.

To any nurse or medic or doc who knew him, he was a local drunk… but to me he was my uncle.

I knew him as a kind loving man as well. I remember family BBQs and him tossing me up in the air as a kid. I remember him showing up drunk to Thanksgiving and not making it out out of the car before passing out. I remember the disappointment in my family’s faces. I remember the shame in his eyes. I remember driving around his neighborhood looking at the entrances of taverns to see if he was passed out.

I wondered if anyone would know to call us if he died. I even wondered if he had any identification. But they did call. And I knew when I saw him at age 55 in the ICU weighing 90 lbs, dying of hepatitis C and esophageal cancer that he didn’t have a lot of time left.

How It Impacted Me as a Nurse

I was a nursing student and an ER tech, but I knew in my heart this time was different. I saw people fear him. I saw nurses treat him as if he was a leper. One yelled at him to be still while she gave him a shot of heparin as he grimaced in pain.

Nurses came in one by one to start an IV… and he grimaced in pain. Despite knowing better, only until after the 4th nurse was unsuccessful I begged them to stop and give him a break.

My hospital accepted him into inpatient hospice. I was relieved.

When he arrived, I saw the 2 EMTs toss him on the hospice bed and walk out without saying a word while he grimaced in pain. They probably got held over and he probably didn’t seem like an urgent transport.

They didn’t want to touch him.

I didn’t say anything.

I was scared to touch him too.

He was emaciated with a huge head and a gaunt appearance. I wondered if he had AIDS. I felt bad for thinking that. I still kissed his forehead and told him he was going to be okay. Because I loved him. He was my family.

And then I saw nurses treat him with kindness. I saw the beauty of a non-judgemental hospice team make his last 96 hours on Earth a time where he could make peace with his demons. I saw Roxy drops for the first time and I saw him get some relief from the pain of his untreated cancer and impending death. I saw them allow me break the rules and lift his frail body into a wheelchair, fashion a Posey to hold him up and take him down stairs for his last cigarette on Route 30.

I was able to spend my breaks with him. I got to suction him and help give him a bed bath. I got off my 3-11 shift and spend a few hours with him watching a baseball game on replay. I sat with him in silence and I held his hand. I finally knew what people meant when they said the dying watch their life play out in their minds. I swear I could see it happening. I asked him if he was thinking about things.

He said, “Yep.”

I asked him if he wanted me to stay or go and he said, “Stay”. So I stayed.

I heard the death rattle for the first time. I cried to a veteran hospice nurse and she explained how the Scopolamine patch would help. I finally felt what it was like to be helpless to a family member in need and her words of comfort and years of experience meant everything to me. She said he probably had 48 hours at the most. I read Gone From My Sight, the blue book of hospice by Barbara Karnes.

The whole family trickled in. His kids, all his brothers and sisters and nieces and nephews. His children told him they loved him and they forgave him. We kissed his forehead and washed his hair. My mother shaved his face. His daughter said words of kindness that relieved him of any guilt or regret.

My cousin watched me suction him and asked how I could be so calm and so strong. I didn’t feel strong or knowledgeable, but when you are the “medical person” in the family, they see things in you that you didn’t know you had. We surrounded him with love and light and he died surrounded by everyone who ever meant anything to him. The nurses even cried.

I got to see the dying process for what it was. It was beautiful and at the same time so humbling it brought me to my knees. I have never forgotten that feeling and I pray I never do.

Is alcoholism a disease? We debate it as health care providers and wonder about the others whose lives have been impacted by the actions of an alcoholic. The amends that never got made. I guess I don’t care if it’s a disease, a condition, or a lifetime of conscious choices and poor judgement. In the end, it’s a human being… usually a dirty foul smelling human being with missing teeth who may or may not be soiled in urine and vomit. Sometimes kicking, hurling obscenities, racial slurs, or spitting. Often doing all of the above at once. It’s hard to empathize with a human being who arrives packaged up that way. It’s hard to care or to want to go above and beyond. And I don’t think you should ever feel guilty if you don’t have those feelings. That is okay. It’s natural to wonder about the damage these people may have done to others… wonder about how many lives they might have ravaged.

Please don’t take their pain as your own… at least try not to. It is not your pain to carry. And we all know that is easier said than done. But please, treat them with dignity.

They feel.

They hear you.

Give them the care you know you are capable of giving. I can tell you, I hold a special place in my heart for every nurse who touched my uncle with a gentle hand… who cleaned him for the fifth time when he was vomiting stool…. who asked him to smile… who smiled back at him… who stroked his forehead and put a cool washcloth on it.

I am eternally grateful for anyone that saw beyond his alcoholism and saw a person. A human. A child of God (if you believe in God). A father. A son. An uncle.

And I believe in my heart he felt the same way, even if he didn’t or couldn’t say it.

So, if you have that patient… that difficult, hard to like, dreadful patient… Don’t think you have to love them or even like them – you don’t. But if you can preserve their dignity and show them the kind of nursing care that anyone would deserve.

You are the reason we are the world’s most trusted profession. And even though you don’t know it, someone saw and felt it, and it meant the world to them. Go to bed and sleep soundly because you deserve that.

This post was written by Jocelyn Rangel, RN. She is from Chicago, and after being an ER technician during nursing school, she is now on a critical care transport team. If you’d like to check out more of her writing, you can find her on Tumblr at Lake Front Nurse or on Twitter at JR_AngelRN. Please join me in thanking Jocelyn for sharing this incredibly powerful and difficult event of her life with the nursing world, in hopes to positively impact the way nurses provide patient care to patients suffering from alcoholism. I know it has profoundly impacted mine.

When Your Patient Starts Crying

When Your Patient Starts Crying

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Everyone has their own forte’, and for some, providing emotional support to people in crisis can be an OMG WHAT DO I DO moment. It can be uncomfortable. It can be weird. It can be scary. It can be one of those situations you avoid at all costs.

But it doesn’t have to be! Some of the best nursing care you can provide can be in these moments. I learned some things that are very valuable when I started to find myself in this typical situation more frequently that I want to share with you.

Whenever people used to get emotional in front of me, my natural response was to try to make it better. I wanted them to stop being upset. I wanted to fix it, STAT. I felt inadequate if I could not say the perfect thing to them to remedy the situation. This left me feeling like a bad nurse and desperately avoiding emotional patients and family members. However, after I learned some things I realized how wrong that thought process was.

It is really important for you to know this: even if you have the most perfect response to them, you’re not going fix it. You’re not going to make it go away. You’re not going to take the pain away from their terminal cancer diagnosis. You’re not going to heal the anger in a family’s heart for their father not taking care of his blood pressure and ending up with a massive stroke and who is now dying.  You can’t fix that with words. That pain is there and you cannot remove it. But you can comfort it.

It’s also important to know that they don’t expect you to fix this massive tragedy with words. They’re not sitting there, crying and waiting for their nurse to have the perfect verbal response to put them at ease. What they are yearning for is support. They are in desperate need of someone to just feel with them.

So, how does this look practically?

The first step is to let go of that natural urge to fix the situation. Take a deep breath and let that go – you cannot fix this.

Allow silence.

I know it can be awkward, but being okay with silence and just being with someone who is hurting and not rushing them or yourself means a lot to someone. Many times, these patients or family members don’t want to burden others with their emotions. But they need to experience them. They need to feel them. You just being there, allowing silence and providing support that’s not rushing out of the room lets them know that their emotions are valid. They are important. They deserve time. And you are an awesome and supporting nurse, so you will provide that.

Acknowledge the situation.

Sometimes, people just need to hear that what they’re going through is tough. Hearing a nurse acknowledge how tough a situation is, that they’re going through a lot, can really validate someone. It can let them know that it is okay to be upset, sad, angry, or whatever emotions they’re going through because this is a hard situation. And we see and recognize it.

“I’m really sorry this happened,” with a hug or hand on the shoulder is much more supportive and powerful than people realize.

“I’m so sorry this is happening but I’m really glad you told me. I’m here to support you and your family. I’m here for you.”

Or even just grabbing a box of tissues, patting them on the back, and saying you’re sorry and allowing silence and support can be enough.

 Take really good care of them or their loved one.

If they really trust you to do a good job with their loved one, that will put them at ease and support them by taking one big stressor off their plate. I don’t mean all of the technical stuff like getting all of your charting perfect, interpreting lab values, giving all of your meds precisely on time, or consulting with the interdisciplinary team. I mean the more basic stuff. Things like taking extra time to comb their hair, getting their favorite flavor of Jello, or trying to connect with them and make a joke to get them to laugh…that can really mean the world to someone. If they trust that they or their loved ones are safe and cared for in your hands, that itself provides emotional support.

I have taken care of patients where I did the above things. It didn’t feel like much to me because I wasn’t fixing anything, I wasn’t physically making anything better. I couldn’t actually see the impact I was having. However, when I did these things, I received the most emotional responses later in the shift or the next day. Tearfully, patients and family members have told me thank you for my love and care. Once I let go of fixing and started supporting, somehow my patients and their loved ones felt even more cared for.

My next post will be an example of how I went through these steps. Stay tuned!

What kind of small, seemingly insignificant things have you done for a patient or their loved ones that you later found out meant the world to them?

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Guest Blog Post:  A Mother’s Goodbye

Guest Blog Post: A Mother’s Goodbye

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Just like I’ve done one hundred times before, I recently held a young patient’s hand while we withdrew life support and they passed away. We have to stay in the rooms throughout the passing in order to administer the pain medication and anti-anxiety medication, and to ensure they are comfortable and calm in their final moments. These scenarios and these patients are always hard on our hearts as nurses; always heavy, difficult, awkward and isolating, as we cannot talk about them with anyone else.  We are, to some extent, are expected to carry these painful and intense moments without being able to share their weight. This time, however, felt even more profound. This patient was my first withdrawal of care since becoming a mom and it was as though I were seeing it through new eyes. This time I couldn’t stop the flood of emotions as I watched her family say their final goodbyes. Her dad came over and kissed her forehead, her brother stepped up and rubbed her arm, her husband kissed her fingers one by one and tearfully said his farewells….and then her mom stepped over.

This heartbroken, grief-stricken, absolutely shattered mother took the young woman’s face in her trembling hands and held it, soaking in her daughter’s beautiful serene face one last time and she wept. Her tears fell from her chin, landing on her daughter’s calm face and running down into her pillow. The mother kissed her daughter’s forehead, her cheeks, her temples, her jawline, her entire face was covered in slow, intentional, deep, long kisses. The kind of kisses a mother has given her child hundreds of times, before nap times, before bedtimes, before summer camp, on first days of school, after nightmares, after skinned knees. They are kisses that say “I love you”, “You mean the world to me”, “You are my heart, outside my body” and “I would do anything to keep you safe.” They are not rushed, they are not forced, they are not routine or automatic or without intention… they are the only way a mother knows how to tell a child even a fraction of how deeply they are loved.

As we increased the pain medications and removed the interventions keeping the patient alive, the monitor showed us as the woman slipped on to her next life and her soul was free from the painful, broken, suffering existence she had known here. Her mother clutched both of her daughter’s hands in her own, rested her head on her daughter’s now still chest and wailed. There is a cry a mother makes when she loses her child that I have heard so many times it is ingrained in my soul. Husbands don’t make this sound, wives don’t cry like this, even fathers don’t wail with this out of body gut wrenching vulnerability. It is, without a doubt, the sound a mother’s heart makes when it breaks. I stood beside the bed, not wanting to intrude on this moment, not wanting to break this bond they still so clearly shared, and I silently wept along with her.

Tears dripped off my chin, soaking into my scrub top as I ached for my little girl, miles away at daycare, oblivious to the evils and pains of the world. I ached for her innocence, her hope, her optimism, all the beauty the world had yet to show her and all the loss she would, undoubtedly, see in her lifetime.

Being a mother changes everything. It changes your marriage, your job, your priorities, your goals, your hopes, your dreams, your successes and your failures. It changes you to your core in ways you could never anticipate or ever articulate. I came home on Friday night after this shift and I held my little girl. I slowly, inch by precious inch, covered her tiny beautiful face in kisses. I rocked her tight against my chest and in a way only a mother can tell her child, each kiss said “I love you”, “You mean the world to me”, “You are my heart, outside my body” and “I would do anything to keep you safe.”

Life is beautiful but tragic. Hold your little ones close and cover them in kisses.

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Written by Kelsey Vandersteen, BSN RN who is a Trauma ICU nurse in Wisconsin, USA  

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Assisted Suicide:  A Nurse’s Perspective

Assisted Suicide: A Nurse’s Perspective

Physician-Assisted Suicide_

This is a guest blog post written by fellow nurse author, Susan Allison-Dean, MSN RN.  This can be a pretty emotionally-charged topic and was interested to hear about her research during graduate school.  Check out her post below and please comment with your thoughts and if you’ve personally done research on the ethics of this!  Please, be respectful, professional, and appropriate with your responses as many have very strong beliefs and feelings about this topic.  

The issue of assisted suicide, otherwise known as active euthanasia, is hot in the news again. Earlier this month, California Governor Jerry Brown signed legislation to make assisted suicide legal. The California law will permit physicians to provide lethal prescriptions to mentally competent adults who have been diagnosed with a terminal illness and face the expectation that they will die within six months. Last year another Californian, 29-year-old Brittany Maynard, made headlines when she elected to move to Oregon, where assisted suicide is legal, to end her own life. Maynard had been diagnosed with terminal brain cancer and wanted to “die with dignity”. Governor Brown and Ms. Maynard made their decisions using the ethical principle of autonomy – the right to self-determine a course of action.

It was the principle of autonomy that led me to select active euthanasia as the focus of my graduate ethics paper back in the early 1990’s. If I were in a hopeless medical situation, I would want the ability to get out of it, I remember thinking back then. Our professor also required us to choose a health ethics topic that was current. Dr. Jack Kevorkian was all over the news for his efforts in offering patients assisted suicide. I admit, this was an added benefit, I thought.. there would be plenty of sources to put a literature review together. Unbeknownst to me, a classmate across the room chose the same topic, with the same thoughts.

Flash forward to the end of the semester when each of us presented our ethics topic. Much to my surprise, I found that after a rigorous review of the active euthanasia literature and the ethical principles involved in this topic, much to my surprise I concluded that I was not in favor of active euthanasia. It was the principle of utilitarianism – a theory that supports what is best for most people, which led me to this outcome. The utilitarianism theory states the value of the act is determined by its usefulness, with the main emphasis on the outcome or consequences. An issue of great concern cited in multiple ethical journals regarding active euthanasia is the slippery slope effect.

Once intentional killing begins, however well intended it may be initially, it opens the door for humans to extend this practice. Those who may be deemed a ‘burden’ to society may fall victim to non-voluntary or involuntary euthanasia. It may also unknowingly pressure people who are not well to feel they ‘should’ kill themselves. Ironically, the other student in my class came to the same conclusion.

During the course of our analysis of this topic, we both found that we were in favor of passive euthanasia. Passive euthanasia means that when a person can no longer naturally sustain himself or herself for whatever reason, they should be allowed the right to die a natural death. This incurs by actively removing, or withholding, life-sustaining equipment. An example of this is refusing or removing a feeding tube or ventilator. Passive euthanasia leaves the decision of death in the hands of a higher power-God, The Universe, Mother Nature, etc.

Ethical decisions are not easy because there is no ‘right’ answer. Nurses are often on the front lines of these difficult, emotionally charged situations. Understanding ethical principles and being active on ethical committees can help each nurse to understand why he or she comes to certain conclusions and respect those who come to conclusions that are different.

1413210650Susan Allison-Dean, MSN RN is a nurse who retired from traditional practice in 1999, after working 13 years as a Wound, Ostomy, Continence Clinical Nurse Specialist.  She has authored several clinical and horticulture articles and was a contributing author to the bestselling book, Touched By A Nurse.  She is passionate about the sea and loves exploring tropical islands.  She extends this passion by doing volunteer work benefitting dolphins and whales.  Sue splits her time between Armonk, New York and Cary, North Carolina, with her husband and English bulldog, Bubba. Check out her website here.

And please check out Susan’s two books!  Woo hoo!  Go nurse authors!  Clicking on the image will take you to Amazon to learn more.  

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Why I Can’t Cry With You

Why I Can’t Cry With You

Since my post I Wish I Could Cry With You, But I Can’t went up, there has been quite a large response.

I felt the need to write a follow-up post to further explain myself.  I think that a lot of nurses really understood what I meant with my post, but those that either aren’t nurses or haven’t been in the field long thought that me not crying meant I’m not there for my patients and I ignore their emotional needs.

You see, there is quite a vast amount of grey space between being emotionally void and jumping all the way in.

I described a grieving patient or family member as being a deep, dark pit of despair.  I talked about me empathizing with them by climbing down a ladder into that pit with them; but needing to stay on that last step so that I can quickly climb out for my patient next door at the drop of a hat.

I got that example from the wonderful Brene Brown.  Here’s this phenomenal explanation of the difference between being sympathetic and empathetic..  Sympathy vs. Empathy

This process of being emotionally present for patients looks different for each and every nurse.  For me, if I step off of that last step, I really can’t do anything else.  Stepping off of that step means I start crying.  Why do I jump right to crying?  Because I work in a large urban neuro intensive care unit and I see some sad, sad stuff.  Every day.

Rip your heart out stuff.  Stuff that constantly makes me picture my husband John, my mom, my dad, my sister Nikki, or my BFF Beni or Lonzell in that bed hours from death. Stuff that gives you anxiety every time the phone rings at an odd time because you think you’re going to get the phone call that your patient’s family got yesterday.  Stuff that keeps you constantly aware of how fragile and precious every single second with them is.  So, while I’m actively fighting those thoughts every time I walk into my patient’s room for 12 hours, letting the floodgates go and picking myself back up in a moment’s notice is just not an option.  For me.

If I start crying, I can’t go titrate drips, talk to the physician that suddenly called and needs to talk to me – NOW, or go grab Zofran and a basin because your loved one is puking everywhere and it’s my job to fix it.

Why is crying my limit?  I don’t know.  I know other nurses that can cry one minute and pull it together for the next.  When I cry, the floodgates are opened and I’m down for the count for a bit.  This is not new.. when I got married four years ago my husband and I had a “first look” before I walked down the aisle just so I wouldn’t do the ugly cry.  I was well aware and took appropriate precautions!

Don’t believe me?  Here’s proof that I am worthless when I cry.

See the outstretched “please comfort me” arm?  Ugh. That.

When I lose it, it turns into being more about me than the patient or their loved one.  I don’t want it to become about me – that’s not appropriate.  So, I’ll take the appropriate precautions to compose myself before stepping into the room, to disconnect the dots, to give myself what I need in order to be there for you.

I’m not ashamed that it’s hard for me to recover from crying.  I’m not ashamed of my ugly cry.  I don’t think it makes me less of a nurse or a weak person. I think we all need to be aware of ourselves, our limits and our needs.  This is one of my limitations, and pretending it’s not there or being ashamed is just stupid.

I Wish I Could Cry With You, But I Can’t

I Wish I Could Cry With You, But I Can’t

This post contains affiliate links

Author’s note: I believe many people misunderstood what I meant by I can’t cry with you. I think many assumed that I was trying to communicate that I am not allowed to cry, rather than I emotionally cannot handle your pain right now and therefore must distance myself.  Please check out my follow-up post, Why I Can’t Cry With You if you have a knee-jerk “did she just say she can’t cry with her patients!?” reaction. I have cried with many patients. This post discusses the emotional challenges of working with people in the midst of death and dying.

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I just saw the doctor walk out of the room…the room of your husband on a ventilator, who after 12 days of no improvements, has had set back after set back. I talked to the doctor before he walked into the room. I know what he told you.

Forgive me. I have to avoid you for a short time. I’m going to go do something else for a little while.

You see, I’ve seen that look before, that look on someone’s face where they are about to sob uncontrollably and throw up from the sheer emotional pain. People usually put on a strong face when the doctor delivers the news. And as soon as the physician has vacated the area, they allow themselves to break down.

But guess who is still in the room?

The nurse.

Through their tears, they ask us the questions they were either too shocked or too scared to ask the doctor. Somehow, what we say stings even more.

Shift after shift, we see lives permanently altered. We see people walk into the hospital with hope and we see them walk out with despair.

It never gets easier to do this. You just get used to it. You figure out how to do it.

So, I’m sorry. I’m sorry to the wife who needs me right now. I know you have questions you want to ask me. Questions you didn’t think to ask the doctor. Questions you didn’t want to ask him because you didn’t want him to think you were stupid. Things you want me to explain. I know you want my honest opinion.

I need to collect myself first before I walk into your husband’s hospital room. I need to put up my wall. I need to mentally prepare myself to not compare you and your husband to my mother and father. I need to disconnect the dots.

I have to do that because as soon as I’m done being there for you, I have to go see my other patient. My patient that will probably recover from the massive stroke he suffered, but is a little down today. I have to go in with a smile on my face and tell him that he’s doing great. I have to be happy for him. I have to motivate him. I have to inspire him.

So, please forgive me. I know that because I’m not emotionally upset with you right now, I may look cold and heartless. I promise I’m not. It is out of self-preservation that I am not going into that deep, dark pit of despair with you right now. I’m going to get as close as I can without losing it. I’m going to take a ladder down into that pit with you, but I’m going to stay on that last step. I’m going to stay on that step because I have to be able to quickly climb out on a moment’s notice for the man in the room next door.

You see, I’ve gotten pretty good at that. I’ve gotten really good at lowering myself into that pit and getting as close as I can to your pain, but not quite there. And I’ve got even better at running up that ladder and out as fast as I can.

I’ve gotten good at that because I’ve had to. If I take that last step, I cannot continue on. I cannot do my job. I cannot be there for any other patients. I cannot talk to physicians and coordinate your husband’s care or the care of any others. I cannot hold myself up. All I will think about is my husband dying. Or my father.  Or my mother.

So, I put up my wall. My boundary of empathy. I will get as close as I possibly can for you. I want to support you. I want to be there for you. I want you to feel cared for. So I will give you as much as I can bear. I pray that will do, for I have no more left.

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I am hosting a free 1-hr webinar with Nurse.com entitled Empathy 101 for Nurses: How to Care for Yourself While Emotionally Supporting Others. You can get a free CE for the 60 minute course. Sign up here. 

Here are a few great books that discuss empathy, compassion, death, and the human experience:

   

   

More posts on FreshRN about death and dying:

 

 

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Something You’re Dying to Talk About

Being a critical care nurse, I’ve witnessed quite a few people pass away.  I’ve assisted in taking people off of the ventilator to allow them to pass naturally.  I’ve cared for patients that are donating their organs.  I’ve been there for people when they take their last breath because their loved ones could not bear to watch.  I’ve watched the monitor flatline.  I’ve carefully removed wedding bands and given them to crying spouses.  And I’ve gently cleaned patients after they’ve passed and sent them off to the funeral home to await their last goodbye.

I don’t know why, but it doesn’t really phase me too often anymore.  Sadly enough, I guess I’m used to it.

But there’s one thing I just can’t get used to:  people that have never talked about death with their families and loved ones.

Death is a part of life.  It is never if you die, it is when you die.  We will all have this experience.  No exceptions.  Even those people in your life that are so important you, the ones you could never live without.. they’re going to die someday whether you acknowledge it or not.

Once I talked about this with someone that was close to her dad.  She said, “My dad isn’t going to die.  I wouldn’t be able to live without him.  That’s not something to even consider or talk about.”

She said this, as if she had a choice in the matter.  The fact is, her father will die one day whether it’s in a car accident tomorrow or drifting slowly to sleep when he’s 96.  Regardless of when, pretending that it is never going to happen is going to make it all the more traumatic when it does.

So why don’t we talk about it?  Why do so many families/loved ones come into the hospital, never having spoken about death.. ever?

I honestly don’t know the answer to that. Maybe that “I’m invincible” thing you naturally develop in your teenage years never went away.  Maybe no one close to you has died before and you’ve never been forced to deal with it.  Maybe you’re so caught up in your day-to-day that you’ve never had to think about the finality of life.  Or maybe it brings up emotions and you just can’t go there.

I don’t know.  However, regardless of the reason for not talking about this, there is one thing I do know:  the absolute worst time to talk about this for the first time is when you’re standing at the end of a hospital bed, looking at your dad on a ventilator after a massive heart attack with four vasoactive drips, barely maintaining his blood pressure, with his ribs cracked from multiple rounds of CPR.

That’s traumatic.  That’s really, really hard.

And it gets worse.  Now you have to make a decision for him (not for you, for him), never having talked about it before.

That’s even more traumatic.

Because we don’t talk about this stuff when we’re healthy, we’re forced to make the hardest decisions of our lives in the midst of the most terrifying nightmare we could ever imagine.

Many people do not get to pass peacefully because they had not talked about this with their loved ones.   Some people go to the trouble of advanced directives and living wills but don’t share it with their loved ones so they don’t truly understand or appreciate the importance.  Or even worse, they designate someone who cannot see through their own personal desires and pain to make the right decision.

I implore you, as health care professionals and as people that will die one day.. have this conversation with your loved ones.

Identify someone you trust (and it’s not always your spouse!) and talk to them.  Talk to them about what you would want if the decision was either to pass away or to live out the rest of your days in a nursing home, requiring 24-hour care.  Make sure they will be able to see past their personal pain and make the right decision for you.  Make sure they know you specifically chose them to advocate for you.  If you don’t think your legal next of kin will agree with this, it is absolutely essential that you get health care power of attorney paperwork completed.

I argue that this conversation and this trusting relationship is much more important than a legal notarized document with your signature on it.

WebMD explains this in much greater detail here.

Wikihow explains how to go about doing this here. 

Have these crucial conversations now, not in the middle of the night after you’ve been up for 36 hours, staring at your wife who just had a massive stroke with no brain stem reflexes and is on a ventilator.

Do it now.  When you’re sitting down for coffee in the morning, thinking about how much you love her.

You’re a Life Saver. Literally

You’re a Life Saver. Literally

You are a life saver.Literally.

I don’t know if any of you nurses out there struggle with what I’ve been fighting over the last year or so.  Whenever I’m in a large crowd and see elderly people or someone not looking so hot, I play the worst-case scenario out in my mind.

They collapse.  I run over.  Start CPR.  Yell for an AED.  Crowd control.  Rip off shirt.  Attach pads.  Shock them.  Hear their wife sobbing behind me.  CPR.  CPR.  Oh, more CPR.  Shock again.

You get the picture.

Ever since I started working in critical care, I started getting this crowd anxiety.  Through spiritual support and prayer, I have been making some strides.

I started to think about it though.. although it produces anxiety, it really is amazing that we know how to shock life back into people.  We pump someone’s heart to get blood to their organs.  We alert the medical team when things start to look not so great.  Because of our job, we know how to save lives.

I just had to think on those two words for a while:  save lives

Save lives.

We save lives so often, it seems to lose its meaning over time.  I know I’m guilty of this.  Maybe that’s just the way we cope so we can continue to do this job day in and day out.  Or maybe we do it so we don’t have to keep thinking about life and death any more than we already do.

But when you push epi and get a pulse back, or when you shock someone and get a rhythm, or when you catch something early (sepsis, increased intercranial pressure, worsening bleeding, etc.) .. and because of you they didn’t have to die, it’s so surreal.

Because of you (and the rest of the team), that person still has life in them.  That person who has a family, a spouse, children, grandchildren, siblings, parents, friends, pets.. because of you, that person is not dead.

It it just so freakin’ cool that it’s part of our job that we know how save lives.  People are brought to us so we can keep them from dying.  And we get paid!

I just know I’ve gotten to a point where it has turned into a job on some days and I forget.   I forget how amazing it is that through my care, I am prayerfully preventing someone’s death.  And in some cases, allowing them to die with dignity.

The crowd anxiety, although unsettling, brought me back.  It brought me back to reality.  It brought my heart and my head back to the ground so I can again acknowledge and be aware of the basic wonders of our job and not get lost in the tasks.

Our job is just so freakin’ cool.

Save

Sitting Down for Your Patient

I went to NTI in Denver, Colorado this last week.  For those of you that don’t know, it’s an annual national conference for critical care nurses.  And it’s awesome.

I went to a lot of sessions.  Some on brain death, some on vasoactive drips, on sepsis, and hyponatremia.. but the ones that hit me the hardest were the ones about end of life conversations and palliative care.  Those were the tough sessions.

It made me realize something.  We’re the nurse.  We’re running the show.  We’re in charge.  And for those traumatic situations that we see every day, we have our Nurse Face on.  Our tough-as-nails so we can live to fight another nursey day face.  And because it happens so frequently, you sort of have to do that as a survival tactic. Between constantly juggling our time management so that we can get everything done and not wanting to emotionally go there with the patient/their loved ones, we get sort of stuck.  Stuck at the bedside.

So there we stand.  At the patient’s bedside.  We’re busy working on drips, turns, assessments, and documentation.  But we can get lost in that.  Standing at the bedside is not the only place our patient needs us.  Sometimes, they need us sitting down next to them, listening.  Sometimes, they need us sitting down right next to their loved one, supporting them when the patient cannot.  Sometimes, that’s all they want.

As I was pondering this “sit down to stand up for your patient” concept, I was flipping through my Twitter feed.  Mark Reid, MD (@medicalaxioms) tweeted this:

“You know who comes in your house and never takes a seat? Cops. Don’t act like a cop in the patient’s room. Unless you are a cop.”

What perfect nuresy timing, doc!

How intimidating it must be for the patient and/or their loved ones to have someone towering over them, asking them questions about their history and not what they want the future to be like, and not really paying attention.  All the while, cutting them off because w’re thinking about the next 43 things we have to do.

Good nurses + doctors are empathetic and walk through this journey of life with their patients + their families.  We all know life is not perfect, but do we actually believe it?  Or do we try to get through life, striving for it to be perfect, healthy, and fine even when it’s unrealistic?  Even when our patients are knocking on death’s door and no one has told them yet?

We do a disservice to them by not asking them their goals of care.  We cannot just assume everyone’s goal is for their health is to just get “fixed” by all of our modern medicine and technological advancements and go back to whatever they were doing before they came in.  Maybe they don’t want that.  Maybe they’re tired and just need someone to tell them that it’s okay to stop.

We all want to optimize our journey.  However, everyone’s optimal life journey looks different.  The 19-year-old with a terminal heart condition is going to have a very different optimal life than the 35 -year-old triathlete.. and theirs will look different to the 89-year-old with COPD living alone with four hospital admissions already this year.  Everyone’s goals are going to be different and we need to know this so we can not only support them appropriately, but also so we can just plain do what they want us to.  But we have to ask first.  Before they’ve been in the hospital for days, weeks, or even months.

I also think it is our duty as honest health care professionals to be realistic with our patients and their families, even if they are in denial.  We need to be their graceful and supportive reality check.  And for them to be able to hear about the reality of the situation in front of them, they need to trust us and feel a connection with us.  We can (sometimes even quickly) establish this relationship by being empathetic.  Not by trying to fix things or make them immediately feel better, but just by connecting with them.

For those of you that don’t fully understand the difference between sympathy and empathy, check out this 2:45 minute video that explains it the simplest yet most helpful way.  It really helped me differentiate between the two because I didn’t understand it before.

When patients and their loved ones know and believe that you empathize with them and are being truthful, that will enable them to make sound decisions for themselves and their loved ones, even in the midst of chaos.

And as stressed medical providers, isn’t that’s all we want?  To know that we’re doing the right thing?  We all know what the right thing is – it’s a mix between what the patient wants but it’s also what we truly believe is right.  And if we’ve built a trusting relationship with them and their loved ones and we have no doubt we are honoring their decision (that was made because they knew all of the facts and felt supported), it typically will align with what we believe is right as well.

If from the moment we meet our patient, we empathize, connect, and listen to them while gracefully explaining the reality of what’s going on – and immediately identify and agree on realistic goals, we will avoid doing a lot of unnecessary things.  We can all rest assured that we are all fighting the same fight, working together towards the same goal.

This will avoid moral distress for the nursing staff and medical team because we know we’re doing the right thing.  And not to play the money card, but we and our patients can avoid paying for a bunch of things they didn’t really need or want in the first place.

Truthfully, we can all benefit from this.  And I think it is our duty at health care professionals and human beings to provide it every single time.

Have you ever had a situation that could have been avoided by some goals and support from day one?  Are you a palliative care pro and have some insight?  Please, comment and share below!  I’d love to hear your story!

Guest Blog Post: A Wedding in Intensive Care

A few days ago, a Twitter bud of mine, @Terimedwards tweeted:

Y’all. We had a wedding in the ICU so a man could see his grandson get married before he dies. #beautiful @NurseEyeRoll

And this immediately made me emotional.  And immediately made me want her to tell us the story!  Teri was gracious enough to write a blog post about this day for us all to ready and enjoy.

If you’re a nurse, it’ll make you proud.  If you’re not, it’ll make you want to be one.

Thanks Teri, for giving us all a glimpse into your nursey world.  Thank you for sharing this beautiful moment with us.  And thank you, and your coworkers, for being wonderful nurses.

_____________________________

I work in a large intensive care unit. Forty-two beds to be exact. When a unit is that large, you don’t always know everything that is going on with other patients or you coworkers/friends.

However, the big stuff usually makes it all the way down the hall, like someone has a flesh-eating bacteria that is requiring maggot therapy (true story), someone is mass transfusing, or someone is going nuts (patients or family members). You can imagine how the news that we were going to be having a wedding at our evening visitation spread through our unit like wildfire.

Unfortunately, like every ICU, it is full of dying people. This particular patient had a disease that would ultimately take his life. This man was not my patient though, which is probably for the best because I would have been Kim Kardashian ugly-crying all over the place. The doctors knew there was nothing else they could do for him and that he was not going to make it. The problem was that his grandson was going to be getting married in a few months. A few months was not going to work for him.

So, I assume with the Rascal Flatts song in mind, they decided, “Why wait?”. They had about fifteen friends and family show up in the room at the ceremony. A family member was an ordained minister who performed the service. The adorable bride got to wear a white sundress and even carried flowers.

The story is adorable, sweet, and makes even the harshest people tear up. But my favorite part of this story is what the nurses, my coworkers and friends, did for this patient and family during this time.

Our unit is set up on a long hall that has “pods”. There are four rooms in a pod, and one nurse is assigned to two of the patients, so there are two nurses to a pod. In this particular pod where the wedding is going to take place, there were two guys assigned!

For the record, I think guys are the best thing to happen to the nursing profession. If a patient is violent, they step in and protect us.  If a family member is crazy, they stand behind you like the secret service.  And although they “complain” when you ask for their help to turn a 650 lb patient over, they secretly love that their muscles are needed.

But let’s face it; they don’t always care too much about fine details. But these guys, they went all out. They would have made David Tutera proud. They called a local bakery and ordered cakes and paid for it themselves, just so the family could celebrate. Another nurse made cards and went around the unit and had all the nurses sign to congratulate them, sending them our best wishes.

All of these efforts that were put into this wedding solidifies my belief that nursing is the greatest job there is. Very rarely is it the easiest job, and usually it can be the saddest and most stressful job there is. I never thought I would be around so much heartache, and what’s worse, I never thought I would get use to being around so much heartache.

I never thought I would be able to sit with a doctor in a conference room while he told family members that their loved one had just passed away, and then immediately walk back to my friends and laugh and joke about the funny things my demented 90 year-old patient said. While there are fifty things a day that occur that make you roll your eyes (see what I did there?), it only takes one thing, perhaps a wedding, which makes those eye roll moments not only tolerable, but also worthwhile.

When you see a family smile and laugh because they got to share a precious moment with a loved one, a moment that was possible due to the work of the nurse, you get filled with a sort of pride. While this couple didn’t have the wedding they originally thought.. a sundress instead of a wedding dress, a hospital bed instead of an alter, and monitor alarms instead of wedding bells, you can bet that they will never forget the nurses on their special day.

A Nurse’s Confession:  Sometimes I Hate My Job

A Nurse’s Confession: Sometimes I Hate My Job

SOMETIMES

But not in the way you’d think.  It’s not the hours or the pay or the poops.  It’s how keenly and constantly aware I am of our precious and fragile lives.

Today while I was driving, I came up behind a car with an “organ donors save lives” bumper sticker and I immediately thought, that driver or a loved one of his must have received an organ.

I thought of the times at work when I’m comforting a family who have faced the terrible and sudden death of their loved one who decided to donate their organs.  I thought of the gut-wrenching pain that I’ve seen them experience.

And then, the scenario immediately played in my head of what it would look and feel like if my husband became brain dead and was a donor.

As I pictured myself outside of the OR, right after saying my last goodbye to him, doubled over in those kind of tears that make your throat burn, just before they cut him open to procure his pristine organs to immediately ship them to someone who is already asleep on the operating table somewhere else, my eyes flooded with tears at the next stoplight as I pulled up behind him again.

I pictured the would-be family of the patient that would get his lungs, sitting in the OR waiting room with looks of pessimistic relief.  They know there’s a possible set of lungs, but they don’t know yet how perfect his lungs are, they don’t know yet that my husband’s death will literally breathe new life into their loved one.  I pictured their faces as the surgeon comes out to say the lungs are perfect and they’re going to proceed.

I then thought of that video I saw online of a mother whose 14-year-old daughter suddenly died and they donated her organs.  She found out who got her daughter’s heart, and she flew across the country to listen to it beat.  And I thought of how I’d want to listen to lungs of my husband, breathing life in someone else.

I stopped to breathe deeply and thank God for every single breath.  I uttered a prayer of protection over my husband.  And I again realized how thankful I am for each breath he’s breathing right now across town.  I forget how thankful I am for those breaths.  Each shift that I take care of someone that looks like him, or my dad, or my mom, reminds me  how thankful I am for every single breath.

And all of that came from that darn bumper sticker.

Just another day living this nurse life.

Our Nursing Reality – Part II

Back in November, I posed a question to my nursey Twitter buds:

If you were on a reality show.. what moment in your nursing career would you want the world to see? #nursingreality

The response was jaw dropping.  Every single tweet I read moved me to tears… either from laughing so hard or being so moved from the sorrow, sacrifice, and experience of a fellow nurse on the front lines.  It is amazing what stories we can tell in 140 characters.

Once again, grab some tissues because they’re going to tug on your nursey heart strings..

‪@shelby_bunch:  the first time parents who have tried forever to have a baby, see their newborn.

@shelby_bunch:  Tonight 1 of my residents who hasn’t had a visitor in months got 3 visitors. Her face lit up. It made my day.

‪@cardiackidRN:  Parent saying they were going to stay the night but feeling okay to leave bc you’re taking care of their baby.

‪@harris_noelleplaying endless hours of Xbox with a 17y.o. dying of lung cancer. Turning volume to max when his hearing went

‏‪@renejanern:  holding a pt’s hand while she passed away.  Later finding out from her dpoa that the dr said I was outstanding.

‏‪@barbpetersen:  Telling a weary pt it’s ok to go with the dead relatives. Some need permission to go celestial, and families are rarely ready.

‪@NewSoutheRNurse:  Bundling a preemie up extra tight & taking her out the heated incubator to rock her to sleep bc she has no interaction.

‏‪@eemills02:  When our own colleagues struggle with personal illness & tragedy & still come to work w/ a smile on their face

‪@TheKatieduke:  Keeping your intox pt at bay until the NYPD arrive to arrest him while the man he assaulted gets sutured in the other room..

‪@TheKatieduke:  Convincing a patient that they can tell you all the drugs and bad things they have done- bc we aren’t here to judge. Ever.

‪@BedsideRN:  Pt calls for his wife then apologizes again. “Everything’s muddled up. I forget she’s not there.” ‪#sadnights

‪@barbeedoll08:  fighting for a newborns life for 12 hours straight till it dies. And still caring for it’s brother 3 mos later

‪@sassyfinsloan:  rocking and singing to a frantic NAS baby for 6 straight hours so she doesn’t wake the rest of the unit

‪@TiffanyMcCain:  having a pt just diagnosed w/ cancer light up as they tell you about their baptism in the creek 🙂

‏‪@r0bynRN:  My home care patient with MS who looks me in the eye and says “Thank you. I miss you when you aren’t here.”

‪@TiffanyMcCain:  rocking a baby to sleep in the NICU while holding the passy in her mouth because she isn’t able to on her own

‏‪@fewspokenwordsmaking it possible for a new mom to hold and rock her intubated baby for the very first time.

‏‪@KaleighP13:  showing an ICU pt of 9 days a photo of his infant grandson and he whispered “he’s my everything” as he cried.

‪@NurseSass:  holding it together until you make it to the bathroom after you tried so hard but your pt still died.

‪@ashleycurlll:  watching my stroke pt point at a coke can and say can when she started out mumbling. We both cried. Amazing.

‪@joskajess:  when ur pts wife cries and kisses u bc she’s so grateful u took time to help them understand what was happening

‪@MarciaKehoe:  holding the hand of a pt with 3rd degree burns to 85%, looking at each other with tears in our eyes

‪@LizH1974:  since today is the 75th anniversary of the night of the broken glass, a holocaust survivor who told me I was doing God’s work

‪@Th0rped0when the resident chaplain comes to the floor to bless your hands.

‪@eemills02:  When your pt codes & dies on his birthday just 30 mins before his 8 yo son is coming up to wish him happy bday

‪@tyler_kuhk:  Spotting a pt’s ST-elevation before onset of CP in order to send to cath lab ASAP before RCA occludes again.

‪@cadieg:  trying not to go ballistic on a pt complaining about the wait time after you’ve just called a pediatric code

‪@WV_nurse:  when a dissecting AAA pt comes back and says thanks for helping save their life, there is no better feeling

‪@miranduhh17:  I swear my patients always code in the bathroom and I’m always doing CPR on the floor, in pee :/ ‪#vasovagal

‪@Mztr_e:  Helping a confused hemiplegic patient eat even after he’s punched you and other staff repeatedly

‪@MoJo_RN:  having it take every oz of your willpower not to fkn clock the freq flyer who just spit in your coworkers face

‪@nursetritri:  Hematuria pt FINALLY asleep, foley clogs. Get CBI running after 20 min silent struggle so he stays asleep

‪@cardiackidRNUnderstanding that death isn’t the worst thing that can happen to a patient. ‪#PalliativeCare

‏‪@carriebransom:  Turning helicopter around in air b/c 24 weeker at ref hospital died before u could make it. Quiet ride home.

‪@chelseyrae31:  dancing for my 80 yo confused liver pt while rapping Salt N Pepa and watching her clap and laugh.  ‪#hospice

‪@sproch66:  Best was letter from Organ Alliance for your pts organs you kept going with multiple drugs/vent to transplant

‪@aboulomania:  Helping the meanest pt I’ve ever met walk for 1st time since traumatic amputation after he called me a b****.

‪@EricaYolanda:  bittersweet when my fav homeless patient died in the hospital. At least I know he didn’t die alone in the cold

‪@Run_Fox_Run:  Having one last dance with a WWII vet, whose wife just died, before we transport him to hospice in another state ‪#EMS

‏‪@EricaYolanda: while rubbing some baby powder through my 87 y/o patients hair he says “That’s the s***!”

If you would like to read more tweets, please search nursing reality on Twitter.

Note:  I removed most hashtags and made small grammatical changes for ease of reading.  Otherwise, these tweets were unedited. 

Thank you to each and every single nurse out there, doing what you do best; taking care of the patients that so desperately need you.

Thank you.

When Patients Die

If this hasn’t happened in your young nursey career, it will at some point.  Whether expected or not, patient deaths can be pretty rough on the nurse.. especially if that nurse has developed a relationship with the patient and/or family.  Alas, we are still expected to carry on with our day, caring for the rest of our patient load because that’s just part of being a nurse.

When you have an expected death (a patient placed on comfort care, inpatient hospice, etc), it’s a little different.  Typically family is around, if not, they need to be notified immediately.

“Mr. Smith, this is your mother’s nurse.  I am calling to let you know that your mother passed a few minutes ago.”

This will be done by you, the nurse, after you’ve notified the physician.  You must let the doc know, but they typically ask if it was expected and that’s that.

For unexpected deaths (codes) and family is not around, it’s a little different. This should be done by the attending physician.  Or, if they walk in during the code, whomever was running it should inform them.

If the family is not there and needs to be called, tell them they need to get to the hospital NOW.  If the patient dies while family is en route, wait until they get there rather than calling them immediately.  You don’t want them to get in an accident.  If they show up during the code, and you’ve done your part (told the code team what happened, answered questions, and let them take over) you should let the family know what happened and see if they want to be in the room or not.  Some do and some don’t.

If your state allows it, two nurses auscultating for heart sounds simultaneously for one minute can pronounce a time of death.

Otherwise, if it’s during a code, the physician will call the code.  Your unit most likely has a binder/informational check list for patient deaths that you need to follow precisely.

Things you’ll need to do..

#1) Emotionally support the family.  Grab tissues, call the chaplain, answer questions, etc.  Some may be angry and that’s okay.  That’s how some people deal; you never know how people will react.  Try to find them some place private to be if they can’t go in the room just yet.

#2) Find out if the family wants an autopsy and which funeral home they want to go with.  If they have no idea, your case manager/social worker/patient death coordinator probably has a list that you can provide to the family.  This is extremely important!

#3) Find out if they will be a Medical Examiner case (ME case).  These laws/statutes vary from state to state, so I won’t go over them here.  But you should know them for where you work.. typically anyone who has fallen, prisoners, children, suspicious deaths, etc.  You may have to call the coroner, tell them what happened, and they decide.

#4)  If they do not want an autopsy and they are not an ME case, then you can remove lines and tubes.  If they are, you must leave everything in.  If you’ve got some time, get them cleaned up and presentable for the family.  Grab a fresh top sheet, remove everything (foleys, IV’s, ETT’s, central lines), try to close their eyes, and clean off any mess left from the code (blood, secretions, etc).  If family is anxiously waiting, I do a quick skin clean, throw a sheet on, clean up what was left from the code, and let everyone in.  Make sure you give the family any jewelry left on the patient (and document what you gave and to whom!).  Give them time, privacy, and respect.  Don’t rush them.  Typically, hospitals provide grievance trays with water/coffee/juice/muffins/fruit for families so call dietary to see if you can get one.

#5)  Once the family is done and left, you’ll need to put them in a body bag with appropriate identification.  Be ever so gentle, because they’ll bruise very easily since they’re starting to mottle.

#6) Make sure you get a funeral home name from the family member running the show.  You’ll call them once family is all done.  They’ll let you know how soon they can get there to pick up the body.  If it’s going to take a while, then you need to send the body down to the morgue and communicate that to the funeral home.  Hospitals usually have security either bring the body down, accompany you, or are the ones that give you access to the morgue.  You and your tech may have to bring the body down yourselves.

#7)  Make sure you have your paperwork together.  There is one paper the family needs to sign, a doctor needs to sign a death certificate, and the funeral home needs a form as well.  Everywhere has a different process, so I won’t explain that in depth.  Just make sure the family signs what they need to before they leave!

Make sure you’ve charted all that you need to about the event.  You should reference your unit’s checklist (if you have one).  But after the time of death, you don’t need to document anything on the actual patient because they have passed.  You’ll want to document in a note everyone that you’ve called (funeral home, coroner, house supervisor), where the body was picked up from, and what you did with any belongings on the family.   And if the patient was on tele, you need to document a flatline strip.  And if they had a pacemaker, your code cart should have a large magnet to place on top of it to stop the pacer from firing.

Some nurses/techs cannot deal with dead patients and may ask others to do their post-mortem care.  Everyone has their limits.  It doesn’t bother me at all but I know it bothers a few of my cohorts.  So don’t think you’re a terrible nurse if you can’t do it!  Some absolutely fantastic nurses just can’t do it, and that doesn’t make them any less of an nurse.  Help your peers out if it doesn’t bother you.

Don’t forget to give yourself some time to absorb what happened.  It can be scary and sad and you still have other patients to care for!  Take a break afterwards and have someone cover your patients once the death has been taken care of for 15 minutes.  Go outside, get some fresh air, cry in the bathroom… whatevs.  But after you have a minute, pull yourself together, rock the rest of your shift, and collapse when you get home.

Just another day living the nurse life..

As always, double check all of this with your hospital’s policies and procedures because that will be what will always guide your practice.

Comfort Care Conversations

These can be rough.  But they have to happen.

Ideally, the doctor brings this up when they decide nothing else can be done.  When you know this is about to happen, you should be in the room.  It sucks, but you should.  You’re there with them all day, your presence should be comforting to them because they’re familiar with you.

Sometimes we need to take the palliative care step before hospice or comfort care.  If the patient’s death isn’t imminent but doing q6hr blood sugar checks are of no point anymore, palliative care is now something to look at.

Sometimes families will ask if we can not do this or that.  I take that opportunity to  educate them about palliative care, saying something along the lines of, “there is something called palliative care where a doctor comes to see your loved one and looks at what all is important at this point and what things can be stopped that may cause more harm than good.”  Then I list stuff that I think they would address, like SCD pumps, blood sugar checks, lab draws, CT scans, etc.

I talk about how our goal of care and if it is quality or quantity.  I try to be care not to overstep my boundaries though.  I don’t want to get out of my scope of practice.

Keep in mind, certain religions do not believe at all in hospice or palliative care.  I’ve had a few devote Muslim patients who believe in the longevity of life.  They will fight for every single day their loved on has on this earth, even if it is in pain and suffering.  Granted, that is not the majority of patients, but I had to keep their beliefs ahead of my own person opinions of what I would do in that situation.  While the option of palliative and hospice care should still be presented, be aware they may not respond positively.  And that’s okay; our opinions don’t really matter.

Your tone should change a little bit after the goals of care have shifted from recovery to comfort.  I don’t know how to describe it, but just be more comforting, supportive, and reassuring.  These patients (if they’re awake) and families are very emotional, understandably so.  Don’t act differently if they cry.  It’s okay to hug them.  That took me a while to be comfortable with.  But once I watched a nurse that I really looked up to go and hug a crying wife, I felt reassured that it was okay.  And that wife hugged and cried so hard, but man, she really needed to.  And she was so thankful that nurse hugged her first.  That was now her go-to person for everything.

A lot of times we’re at a loss for words when dealing with these patients and families.  We just don’t know how to talk to them all of a sudden.  That’s okay, it’s not a comfortable place to be. But we still need to be there for them.

Something that I have learned that goes a long way is just acknowledging what’s going on.

“Mr. Smith, I just want you to know that I’m really sorry that you’re going through this.”  

That says “I’m here with you, I acknowledge this sucks, but we’re going to walk through this and I’ll be here to support you today.”  It can be a small amount of reassurance during a really rough time.

You’re not going to make them feel better or take the pain away, you just need to be comforting and supporting.  Support their decisions, empower them, tell them that their loved one is lucky to have them be there for them.  I also have told families that, although this is a terrible situation, I have seen patients pass with no one at their side, and that I think it’s wonderful that so many people clearly loved this person.

Once you do it a few times, it’ll get a little easier, but it’s never easy.  You’ll also get a lot of “why would God allow this?” and “why is God taking them away from me?” kind of questions.  Everyone’s comfort level with that situation is different.  A standard, “I don’t know; I’m so sorry” is always okay because, really, how can you ever begin to answer that?

Being a Christian, I have prayed with patients and their families multiple times before.  Keep in mind, this was only after I had the green green green light after multiple unprovoked conversations about their beliefs and God’s role in their life.  So if you feel comfortable, and they have given you the green light without you mentioning anything at all first, go for it.  I’ll never forget those patients, they were so thankful for that support and will always, always have a place in my heart.  Some of the sweetest cards came from them.  They made me cry weeks later!  They really get to my nursey heart.

If you’re not comfortable with all that God stuff, which is more than fine, call the chaplain to support them spiritually.  They are awesome.  And if the family doesn’t connect with that particular denomination or person, they’ll know who to contact to get the right one there.

Although, during those really sudden comfort care conversations, I’ve found that patients and families are more comfortable with their nurses than the chaplains.  Mainly because we’re there at their side all day, and in walks some new guy they have to explain everything to.  They know you and are comfortable with you and don’t want to add to the mix.  I get it.  I don’t know if I would want that if I were in that situation either.

Being there for those patients and families is tough and even if you feel like you haven’t helped at all, that’s okay.  You probably have and had no idea.  They’ll probably never forget you.  They may not remember your name, but they will probably never forget the nurse that was there for them when their loved one died.

So tell them you’re sorry, tell them you’re here for them, grab them some tissues, let them cry on your shoulder, hug them, don’t be afraid of them, and if they want some prayer from you, go for it.  They’ll be forever thankful for your support.

And even if you don’t know what the heck to say to them, just take really really good care of their loved one.  That will always be enough, because that’s all they really want.

Helpful tip:  if you’re going to withdrawal life support, don’t say you’re going to “withdraw care”.. this sends a message to the family that can make them think their loved one will receive less care.  We don’t want them to think that.  Often when we switch to comfort care, these patients require more nursing care.  I would use the term “transitioning to comfort care,” or “removing life support,” rather than “withdraw care”.

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