The Emotional Work of Nursing

There are some thing nurses do behind the scenes that people never know. Read this story to find out what Nurse Tiffany did when her patient Bryan was at end of life, and the plan of care was not going like it should.

The Emotional Work of Nursing

Just the other day, I talked with two different nurses who said they cried on the way home from work. One said that she had promised her son she'd take him to a movie after work that night, but her day was so emotionally distressing that when she got home, she apologized, hugged him, told him she loved him and to order whatever he wanted on Pay for View. Then she ordered in pizza and collapsed on the couch.

The other nurse is Tiffany. Tiffany has been a StepDown unit nurse for three years, and she's my hero.

Tiffany's patient was a 29 year old named Bryan with a primary brain tumor metastasized to....everywhere. The cancer had invaded his bowel to the extent that he has not had a bowel movement for seven days. He has a nasogastric tube (NG) because without it he throws up continually. He's been through chemo, radiation and every diagnostic test that exists. No surgeon will touch him.

Amazingly, he refuses pain meds unless his mother is not at the bedside. The reason? He is protecting his mother by saying "No, I'm OK" whenever the nurses offer pain medication in his mother's presence. Still, three mornings this past week at around 0400, he has woken up screaming. Screaming. From pain? Nightmares? Nightmarish pain? Lately the worst pain, if he admits it at all, seems to be in his lower left leg. Bryan is a full code.

His oncologist and primary, Dr. Positive, has not permitted the nurses to get Palliative Care on board. He also has not initiated The Conversation. Instead, when he rounds, he always brightly says "Well, we can do this. (and) We can try that" and beams at the mother, brother, and Bryan. Mom's eyes light up with hope but Jake, the brother, scowls.

Dr. Positive is a very good oncologist, and well liked, but none of the nurses will endorse him personally. His bedside manner is unrivaled. His competence is unquestioned.

So why not? Why do the nurses not endorse him? Because he is not doing his job. That part of the job where, at the end of life, the doctor needs to let the patient and family know there is not going to be a recovery. Yes, provide hope, but not false hope. Realism.

For whatever reason, he will not give up when there is nothing left to be done.

Tiffany believes he is misleading the family and giving false hope. Tiffany has a different vision- one where Bryan is given sufficient pain medications in his last days. Where Bryan is allowed to spend the end of his life in his home, where his beloved dog Max can snuggle in and sleep with him on the bed. Where Bryan can smell the familiar odors (if not eat) of what Mom is cooking in the kitchen. Where he can finger his own worn, blue blanket, and look out his window to the neighborhood where he grew up. Where he is allowed to die.

So the other day, Tiffany had enough. She called Dr. Positive and said "You have to get real with the family. Stop giving Mom false hope. I want you to come in now. Talk to the family. Tell them they can choose hospice and Do Not Resuscitate. They are here now. I also want you to order Dilaudid around the clock." Dr. Positive replied "Ok on the Dilaudid, order what you think."

Tiffany responded "No. You come in. You talk to the family. You order Dilaudid. And you change the Level of Care Orders."

Guess what. He did. He did every single thing Tiffany asked. After he left, Jake went to Tiffany, bear-hugged her, and said "Thank you. Thank you. Thank you so much. No one else has done that for my brother." Bryan was transferred home that day on hospice.

I don't know the end of Bryan's story yet. I do know I am humbled yet again by what nurses do. Things that the public rarely realizes. Thank you, Tiffany. You are a blessing and an inspiration.

How about you? How have you seen nurses make a difference, or how have you made a difference?

1
Up Vote Up Vote ×
Nurse Beth

About Nurse Beth, MSN

Career Columnist / Author

Nurse Beth is an Educator, Writer, Blogger and Subject Matter Expert who blogs about nursing career advice at http://nursecode.com

145 Articles   4,108 Posts

Share this post

Share on other sites
Specializes in Case mgmt., rehab, (CRRN), LTC & psych.

Thank you for sharing this story, Nurse Beth. I wish more nurses had Tiffany's tact and guts to ensure the appropriate interventions are carried out on their patients.

There's nothing worse than false hope. The pressure she put on the oncologist to face the family with honesty is commendable.

Up Vote Up Vote ×
Specializes in Infusion Nursing, Home Health Infusion.

This is why a team is a blessing. Many practitioners fail to see that it is time to just stop all the treatments and let the patient die as peacefully as possible Perhaps they see it as giving up and throwing in the towel, a big defeat. That is what doctors do,they fight like a warrior for life. It should never be seen as a defeat but rather an opportunity to help the patient and family in a different way. It is often the nurse who leads the doctor onto this new path and I am grateful for every last one of them!

Up Vote Up Vote ×
Specializes in Specializes in L/D, newborn, GYN, LTC, Dialysis.

Wonderful post, Nurse Beth. Tiffany is a hero!!!!

As a dialysis nurse, I see so much futile care. It's a horror show sometimes. I used to cry. They haunted me at night and I couldn't sleep. I have found speaking up is futile as well. Even the doctors find it hard to change family's minds when it's clear a family can't understand how much a loved one is suffering as they die.

I just don't do this anymore. I just don't. I still care and listen to them when they need to talk. Rejoice when they get kidneys but I refuse to carry it home and I compartmentalize very efficiently. After thinking about it a minute, it must be I have not to get over-involved emotionally for my mental wellbeing.

I am no one's hero. That's ok. I really try to do my best. I have many grateful patients, they hug me, give me little gifts, bring me food, etc. I love them for it.

But it stays at work. Period.

And the futile super-painful cases, I just don't let get to me anymore. It's the fast track to burnout. I provide the support I can and that's all I can do. It stays where it belongs where my heart is concerned.

Up Vote Up Vote ×

I've been Tiffany a few times but also learned a valuable lesson re oncologists.

I was jumping up and down for a patient that was similar to the young man described here in your post. His wife clung to the remotest bit of hope and it was hard to watch. From my perspective the man was tormented with ongoing treatment and even indicated so to me when his wife was out of the room. I couldn't believe that the oncologist kept "encouraging" them.

I first got the oncology clinic nurse on the phone and when I wouldn't let up, the oncologist got on the phone with me. I made my argument about the patient not having any chance, no quality of life, suffering etc. The oncologist then broke my long held perception of promoting patients' false hopes. She told me she objectively answers the patients' question of can they be given more time. She said if they have a 10% chance of having one more month or week with their family she will tell them that yes she believes she can possibly give them another week. That she has to honor THEIR wishes of having that one last week whether that was something she would choose for herself or not. That she individualizes the treatment plan based on what the patient is hoping to have no matter how worthless it may seem to us. That that is her obligation and duty to the patient.

I never really thought about that the measly week might be everything to someone dying and not ready to say goodbye. That my idea of quality of life is not to be imposed on theirs.

One thing she wasn't aware of was the patient's statement to me about "not wanting to do this anymore" when his wife wasn't in the room. The wife was always present in the clinic visits and there wasn't anything that made her believe that the patient didn't agree with the course. It got her attention and she said that made all the difference, that that was was the kind of information she needed and that she would schedule an appt with the patient immediately and ensure on speaking with him privately, she would also call a family meeting with his permission. Patient was on hospice a few days later.

The wife had been in denial but the patient never gave any indication he wanted something different, until seen in his own home where, unlike the clinic, there were opportunities when the wife left us alone.

My predjudices towards oncologists ended right there. The patients have a responsibility to either speak up for themselves, ask for a private meeting, appoint a trusted advocate, give other family members permission to speak to the healthcare team.. Until then the oncologists must meet patients where they're at, even if it's at a place where we'd never allow.

Up Vote Up Vote ×
Specializes in Specializes in L/D, newborn, GYN, LTC, Dialysis.

One thing I forgot: My heroes are palliative care people....the nurses, chaplains, etc. Thank God for them. I am in awe of those who work with the dying and their families

Up Vote Up Vote ×

If you stick up for a patient like this in Arizona, you will end up without a license. Just saying when the patient tells the nurse they do not want surgery then put in a eithics consult , they are turned into the BON who in turn help their friends who are running the hospital.

Those poor patients and all you hear the BON say " public safety" we have to protect the public. If they say it enough does it make it true ? do they start believing it themselves. Very strange , the most caring profession and AZ has the cruelest Board members.

And now for those of you who dont work in az , the worst of the worst double edge sword from the az Bon is on the NCSBN !! Valerie Smith. Who declares she knows what is the best discipline for all nurses . So you will be 'touched" by her at some point, they are making lots of changes. and not for your best interest. !!

Up Vote Up Vote ×
Specializes in Med/Surg/ICU/Stepdown.
I've been Tiffany a few times but also learned a valuable lesson re oncologists.

I was jumping up and down for a patient that was similar to the young man described here in your post. His wife clung to the remotest bit of hope and it was hard to watch. From my perspective the man was tormented with ongoing treatment and even indicated so to me when his wife was out of the room. I couldn't believe that the oncologist kept "encouraging" them.

I first got the oncology clinic nurse on the phone and when I wouldn't let up, the oncologist got on the phone with me. I made my argument about the patient not having any chance, no quality of life, suffering etc. The oncologist then broke my long held perception of promoting patients' false hopes. She told me she objectively answers the patients' question of can they be given more time. She said if they have a 10% chance of having one more month or week with their family she will tell them that yes she believes she can possibly give them another week. That she has to honor THEIR wishes of having that one last week whether that was something she would choose for herself or not. That she individualizes the treatment plan based on what the patient is hoping to have no matter how worthless it may seem to us. That that is her obligation and duty to the patient.

I never really thought about that the measly week might be everything to someone dying and not ready to say goodbye. That my idea of quality of life is not to be imposed on theirs.

One thing she wasn't aware of was the patient's statement to me about "not wanting to do this anymore" when his wife wasn't in the room. The wife was always present in the clinic visits and there wasn't anything that made her believe that the patient didn't agree with the course. It got her attention and she said that made all the difference, that that was was the kind of information she needed and that she would schedule an appt with the patient immediately and ensure on speaking with him privately, she would also call a family meeting with his permission. Patient was on hospice a few days later.

The wife had been in denial but the patient never gave any indication he wanted something different, until seen in his own home where, unlike the clinic, there were opportunities when the wife left us alone.

My predjudices towards oncologists ended right there. The patients have a responsibility to either speak up for themselves, ask for a private meeting, appoint a trusted advocate, give other family members permission to speak to the healthcare team.. Until then the oncologists must meet patients where they're at, even if it's at a place where we'd never allow.

I never thought of it from this perspective. I am often the first to speak up about end of life discussions, and I am often shot down by the hospitalists. And I often find myself frustrated. But, to consider that the duty of the physician it to really honor the wishes of the patient even in the face of honesty, it makes it really very similar to what we think we're after.

Thank you for sharing this.

Up Vote Up Vote ×

Watch "this ain't the way to die" it's a parody on YouTube

Up Vote Up Vote ×
Specializes in ICU.

That's a lovely post Nurse Beth.

Up Vote Up Vote ×

I work on a hospital unit where a lot of families pressure Physicians to tell them only the outcomes they want regardless of the reality. As a nurse, I sometimes have to find ways to present information to families so they become open to hearing less than positive outcomes. No one wants to tell families they need to change their beliefs and think about their loved ones dying. I am proud to work on a unit where nurses and physicians are working together to tackle these tough situations. Tiffany is a great nurse for advocating for her patient.

Up Vote Up Vote ×

What a wonderful example of nurse advocacy for a patient! and refusing to let the 'doc off the hook! When we see out patients as more than an illness, but as a fellow human being with needs we can help meet, then we can become that persons advocate. Thank you for sharing this story. It has encouraged me.

Up Vote Up Vote ×
+ Add a Comment