A Lesson in Family, Ethics and End of Life

Nurses General Nursing

Published

  1. Do you have end of life requests on paper?

    • 17
      Y es
    • 22
      No

39 members have participated

I never thought I would find myself here.

On August 9th at 0430 I received a phone call.

By 0830 I was sitting in the airport with a one way ticket home in my hands.

By noon I was at the bedside of my favorite Grandma, watching her breathe, at 83 with the assistance of a vent. She would wake to stimulation, fight against the vent and fall fitfully back into Precedex induced sleep.

The next four hours were spent translating medical information from physicians to my family. When I first arrived my family was a wreck. From the time my Grandmother had arrived at this smaller, rural, hospital the staff had been asking for someone to sign a DNR. Confusion and aggression abounded.

My Grandmother does not have a PoA or Living Will. She has never professed any opinion on end of life. When asked "do you want to live, do you want to have surgery?" she shrugs her tiny shoulders. When pressed, with all of her children looking down upon her she, she agrees.

So far my Grandmother is in cardiogenic shock. In short, ten years ago my Grandmother had three stents placed in her heart. One year ago she became very tired, they told her everything was ok, changed her meds a bit and sent her home. Six months ago she went in with SOB and chest pain. They told her everything is ok and sent her home. Two weeks ago she became extremely short of breath and waited until she could barely get off of the couch to go to the bathroom.

So here we are...

MI

CHF

EF of 20%

Pulmonary edema

Chronic Diabetes

Chronic HTN now on a drip of Primacor

S/P Cath with three collapsed stents

Severe CAD with a 10% chance of OHS survival

Afib RVR s/p cardioversion and return to SR

Renal Insufficiency

My family believes at this point that the only way to save her is surgery. I weigh the risks and benefits with my family using my professional experience. Then I look at them and realize they are my family, not a patient's and tell them what is in my heart. I look at my mother and tell her I would never sacrifice even a short amount of time with her, if it meant I didn't have to hear she was gone from a surgeon. 10% is not good enough for me. My family agrees and we begin discussion of medical management.

The plan is to send her to another hospital, where a cardiologist is willing to do high risk stents.

We spend two weeks waiting. She is improving slightly, has been extubated twice and re-intubated.

Lasix drip

Propofol drip

Amiodarone drip

Insulin drip

Heparin drip

Tube Feedings

Everyday is a rollercoaster. One minute she is doing well, up with PT, ECHO shows 30% EF, stents successful. The next day troponins are up to 25.3, she is tachy and red, fighting mucous in her throat and lungs. Staph infections, e-coli, possible C-Diff.

Today I got the call that they had attempted to place a trach vent. That the nurse had intervened and stopped the procedure. That she didn't agree with it.

Here my expertise ends, I am not familiar with vents/trachs/end of life/continuation of life? I tell my mom to call and talk to the physician directly. Risks and benefits. Plan of care. Where are we going with this. Is it worth it.

Apparently part of my family had reiterated the story wrong. There was no dramatic "STOP DON'T CUT" from the nurse. The procedure isn't even scheduled until Monday, however this is how it has been. My family doesn't know (this does not include my mother, she is three hours away and hears the information like I do, second hand) what anything means. They overreact, they call with misinformation. From six states away this leaves me in a constant lurch.

I am currently avoiding the phone because I don't know what to say anymore. I don't want her to suffer, however apparently the trach (which makes me nauseous to think about) will actually make her end of life more comfortable. They don't expect her to live much longer. Her heart isn't strong enough. However this way she would be comfortable, able to talk a bit or write. Able to sit up and be with family. Able to be...ok.

I have never felt a year like this before.

With two early miscarriages, a trip to Ireland, the stress of my Grandmother's impending death and the ethical dilemmas around it, and attempting to start my Master's degree I have never felt so positive and so negative all at the same time.

Thank you for letting me express this. I just needed somewhere where I didn't have to say "breathing tube" and "blood pressure meds". Somewhere where people understand the conflict with being a nurse and being a member of a family.

Tait

((tait)).. A horrible and gut wrenching situation. My heart and prayers go out to you and your family. May you all find the path that leads to peace for your Grandma, and for all of you.

Specializes in ortho, hospice volunteer, psych,.

((((((tait))))))

there was dissension within my family when my grandma, who had advanced parkinson's disease and had had a small stroke, was diagnosed with severe pneumonia.

about six months before, my parents (both lawyers) and my mom's three siblings and their spouses flew in for a meeting. every child, spouse, agreed to support my grandma's desire for comfort care only. a week later when comfort-only measures were in place as requested, my aunt came emotionally unglued, and called every relative there, a murderer.

i obviously cannot know 100% what you are feeling, but i think i have some idea. ((((((((tait))))))))

we'll be here when you need us.

Specializes in ICU.

:hug: Sorry for what you are going through. Hang in there, I know it's tough.

:paw:

My thoughts and prayers are with you.

Here in lies the issue though. It isn't the hospitals call to make her a DNR. It is the patient's, and she didn't make it. Therefore it is the family. Hence why I am in the middle, attempting to educate my family and advocate for my Grandmother to have the best, within reason.

Tait

You are actually not left alone to educate your family with weighing all of the decisions. In most states, at anytime during a medical crisis like this, anyone can call for an Ethics Committee consult. It does not necessarily mean the decision will be for termination of life support or comfort care. The Committee will put all the information from the patient, family and health care professionals into an organized perspective of the situation.

Some states like California also have Health Care Decisions Act which allow physicians to not provide care that is considered to be futile. Most will respect the family's wishes provided they have weighed all the discussion from an Ethics Committee if there is disagreement.

For anyone who has an interest in how Ethics Committees work through a tough decision, the book Clinical Ethics by Albert Jonsen is an excellent read and resouce.

This is the chart we use during a session. Charts may seem impersonal but the questions do address the pertinent issues that some may not take into consideration when they are too close to the situation.

http://depts.washington.edu/bioethx/tools/cesumm.html

http://depts.washington.edu/bioethx/tools/4boxes.html

{{{Tait}}}

Guys, I have very strong opinions on end-of-life and who should get to call it, but this isn't the thread for it.

I wish you all peace, Tait, and a comfortable, fear-free end for your Grandma.

Specializes in LTC, Psych, Hospice.

((Tait))

Sending you big hugs! You certainly have a lot on your plate right now. It is hard being the "medical person" in the family when the pt is someone you are very close to. I will pray for acceptance for you and your family; and for peace for your grandmother.:redbeathe

Specializes in Correctional, QA, Geriatrics.

Hugs. Please know you are not alone. We are here to listen and just "be" there for you. Many of us have walked a similiar path and know how important a safe place to share your emotions can be.

Thanks for sharing your story. You and your family are in my thoughts and prayers.

Specializes in M/S, MICU, CVICU, SICU, ER, Trauma, NICU.

Hugs, Tait.

God bless you, may He bring you comfort on this very, very difficult, but inevitable journey.

I wish you and your family the best.

J

Specializes in UR/PA, Hematology/Oncology, Med Surg, Psych.

I'm sending all of my hugs to you. Had about the same situation with my own dad when he asked my opinion on continuing the chemo. that was killing him. He had never come to terms with the cancer prognosis and always believed he was going to beat it. Hardest thing I ever had to do was tell him my true feelings about continuing on treatment that was robbing him of his quality of life. I still wonder to this day if I did the right thing.

Specializes in Medsurg, Homecare, Infusion, Psych/Detox.

Thank you.

Specializes in ED, ICU, PSYCH, PP, CEN.

Recently went through this with my brother and niece as my mother passed. No words of wisdom, just sending hugs and positive vibes....:heartbeat

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