A Lesson in Family, Ethics and End of Life

[Tait, MSN, RN]

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

[iNurseUK, RN]

For the love of God...with that extent of disease and co-morbidities treatment is futile.

Not only futile but expensive. Any UK hospital would have issued a DNR by now.

A "Care and comfort" order is called for. Quit the hi-tech medical torture and go with the inevitable.

[TabithaB]

*big hug *

[DogWmn]

Another big hug. It's very difficult when your an nurse and a family member, even worse when your doing it long distance. My thoughts are with you and your family.

[classicdame, MSN, EdD]

regardless of the decision, I know it is hard. Hugs all around

[leslie :-D]

(((tait))), i will withhold my professional opinion since you didn't ask for it, but be prepared for unsolicited advice.

heartfelt prayers for peace and resolution.

leslie

[Tait, MSN, RN]

(((tait))), i will withhold my professional opinion since you didn't ask for it, but be prepared for unsolicited advice.

heartfelt prayers for peace and resolution.

leslie

Thanks for the hugs. I am not too worried about advice as there really isn't anything to be said that will influence me. I know my feelings on the subject, my family is quickly learning the ropes, and they are advocating for her. It may not sound like it, but there is a lot of strong support in my family as well as the crazies who want "momma to live forever".

It will be what it will be.

So far, coming from the pulmonologist, it sounds like after the trach, hospice will be consulted for her. I believe my family will come to understand that we have done everything we can for her.

Tait

[Tait, MSN, RN]

For the love of God...with that extent of disease and co-morbidities treatment is futile.

Not only futile but expensive. Any UK hospital would have issued a DNR by now.

A "Care and comfort" order is called for. Quit the hi-tech medical torture and go with the inevitable.

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.

I am thankful we have had this time with her, for my family to come to grips with the situation. I understand it is expensive, which is why I plan to have my end of life decisions clear long before I am in a bed with a vent tube.

Education is power in these situations, and until people understand that having a plan is the best plan, costs will continue to exist like this. It is costing hundreds of thousands of dollars to help my family come to terms with the inevitable.

But that is how it is.

Tait

[roser13, ASN, RN]

For the love of God...with that extent of disease and co-morbidities treatment is futile.

Not only futile but expensive. Any UK hospital would have issued a DNR by now.

A "Care and comfort" order is called for. Quit the hi-tech medical torture and go with the inevitable.

This is why I'm glad I don't live in the UK. There was a recent headline article on this page that outlined the succession of personnel entitled to bestow a DNR on a patient....not one of them was a family member.

OP, my best to you and your family. Being the only "medical" one in the family can be an added stress in any family health crisis.

[Needsmorechocolate]

Gentle {HUGS} and prayers for you and your family during this difficult time.

[LouisVRN, RN]

(HUGS) I'm so sorry for all that you have on your shoulders right now. My father passed away from lung cancer early this year and unfortunately despite the high mortality rate of lung cancer no one in my family seemed the slightest bit prepared until the very very end. At 26 I have already made advanced directives and my family and husband are all aware of my desires when it comes to that time. I hope you find peace.

[Prettybrowngirl]

Tait so sorry that you are having to go through this difficult experience. I've worked the last several years as a hospice nurse and have seen many patients/families dealing with very similar issues. Believe me, this conflict does not go away even once a patient is signed on to hospice. It's such an emotionally charged time that emotion can overshadow reason for many. Hopefully you will find peace soon and perhaps, at an appropriate time in the future, this may lead to discussions with other family members about the importance of having a DPA/Will that outlines their specific wishes when they can't decide for themselves. Best wishes to you and your family.