a tale of two neighbors

Raise your hand if you have ever watched a movie about someone who was dying, in the hospital, on a ventilator, and the patients husband was conflicted about whether to take her off life support.   Keep your hand up if you yelled at the screen "pull the plug you dummy, no one wants to live like that",  OR  "don't give up,  keep trying, she might make it".  

I recently cared for 2 patients right next door to each other in the hospital who had both had extensive strokes.   Betty is 75 and lives with her daughter.  She has been pretty independent  prior to admission although declining somewhat over the last 6 months.  The stroke affected her ability to speak and eat, she is now pretty much confined to bed, and is not interacting with family.   Her doctors are telling her daughter it is unlikely that she will recover to her previous state of health.  They want to know if she would want a feeding tube.   

Bill is 62 and had been pretty healthy until he had a sudden stroke and is now completely unresponsive, his kidneys are failing and dialysis has been started.   He has a tracheostomy tube  as well as a feeding tube.  His wife tells us he would not want to live like this but his kids refuse to give up on him and she does not want to go against his kids.   She is now faced with having to make a decision to transfer him to a facility that can take care of a patient with a trach, a feeding tube, and also be able to do dialysis or get hospice involved and stop dialysis and the tube feedings.                                            

There are no right and wrong answers in these scenarios.  What IS important is that your family knows what you would want.  Don't tell them to "pull the plug".  It's rarely that simple a decision.  Don't tell them "you will know what is the right thing to do for me",  they often do not.   You can make a very hard time easier by having "the talk" ahead of time.  Identify what is an acceptable quality of life to you and what sorts of things you don't want done.   

Betty's daughter was pretty sure her mom had lived a good life and was "ready to go".  She did not get a feeding tube.  She went to an inpatient hospice facility and died surrounded by her family 7 days after she left the hospital.    Bill was transferred to a facility that could care for   him.  It is not real close to his wife.  She visits when she can.  His kids are still hopeful that he will get better.                                                                                                                                                                    

Comments

[Domenico]

I applaud all of you in the medical profession; to do what you do day in and day out is so commendable. I may have the brain to do the work efficiently enough, maybe even brilliantly, but my heart would fail me miserably. Indeed a decision not lightly made.

[Michele]

Thanks for the reminder. It is a conversation we all need to have with our families and something that each person needs to think through carefully. I have a DNR and a medical power of attorney for my husband. We have had this conversation and know what each other wants. But....we've never discussed this with our children. Now, because of you and your gentle reminder, we will.

[Bamajoyce]

This is a tough topic to discuss. Denial plays significantly in the early hours of hearing a bad prognosis and the emotions often play tricks on even the most realistic family members. Having your wishes written out and acknowledged by each important family member in advance could make a very big difference in how one's final days play out. Thanks for your caring insightful blog today. I have been in the position of having to make a final decision for another person and I can tell you---it is not easy!

[jeanette, mistress of longears]

An important reminder about a subject that applies to all of us. I've long had strong feelings about what I want and have given an advanced directive to both my husband and my son. Your understanding of different points of view is so very compassionate!

[Vicki in Michigan]

Modern medicine can do so much. I think many people have lost track of the fact that life WILL come to an end. The belief seems to be that anything can be fixed, if enough money and technology is thrown at a problem.

In my mind, the question is "Given that the end will come, what is the way we want that end to be?"

As long and drawn out as possible, even after the person in question is no longer able to express an opinion?

Or -- as non-invasive as is consistent with comfort....

Thank you for the work you do, and thank you for reminding the rest of us that the end of life can be hard, or it can be a lot harder. These things are difficult to discuss, but so important.

My parents have made it very clear to all of us that they don't want any "extreme measures," and have specified things that they do not want. We are (I believe and hope) all on the same page....

[Chris Oliveira]

When my father went for major surgery, he wrote us a note about his wishes....and left it in his desk. He had a massive stroke following the surgery, and we found the note after his death. We made the right decisions, but his note would have made them so much easier. On the other hand, my mother always made it clear she wanted no feeding tube. I still struggled with the decision after she developed Psrkinson's and struggled to swallow every bite. But I honored her choice. Thanks for being such a caring care giver.

[Joan Clarke]

Such a compassionate blog posting today. Thank goodness we have a living trust/will, all decisions laid down in black and white for our kids and mate. I'm glad we have this in place so that our kids are spared difficult decisions that have to be made during very emotional and stressful circumstances.

Another thing I'm doing so that my kids aren't burdened with a very distasteful job, is getting rid of the massive accumulation of dust catchers, hobby materials, that my kids don't want or have any interest in. Purging the place of all unwanted, unused "stuff." I've had several friends who had to dispense with all the household of their aging or dead parents...a most unpleasant job.

[Loretta]

This is such a wise and compassionate post. Everyone should have a Living Will or Health Care Directive, or whatever your state terms it.

When my own Dad was in his last weeks, his surgeon said we should not transfuse him anymore because he would probably suffer some other horrible complication. At that time, we could not accept it and approved transfusions. He recuperated and lived another 3 weeks, long enough to say good bye to all his family and friends and find out that my sister was pregnant with her first child.

But by the end of the 2nd week, it was obvious that the time had come to stop transfusing as it was to no avail at that point. I had to argue heatedly with the resident, but thankfully, his personal physician came round and directed it.

You never know how these events will go and it puts so much pressure and guilt on the family when they have to make this decision in medias res.

Thank you for your perspective from the other side of the bed and your wisdom.

[SusanS]

Soapbox Rant #1: I'm an SLP in a in a "facility", I know that of which I speak. HAVE THE TALK NOW. My friends, family and acquaintances (and now you) know that I want ice chips, chapstick, and megadoses of morphine. That's it. Can you chant it with me?

Soapbox Rant #2: Feeding tubes are meant to be short term solutions, not a part of long term life support. They do not eliminate pneumonia and furthermore, being fed and hydrated make it that much harder to die. WHICH YOU ARE GOING TO DO ANYWAY!

Dying from dehydration and malnutrition is not a bad way to go if you are ill-

Let me go...but send me on my way with moist lips, a clean wet mouth and excellent morphine dreams. Rub my feet if they don't gross you out too much. I love you, and I'll see you on the other side.

Thanks for the opportunity to rant on this most important subject.

[SusanS]

One more little thing:

www.agingwithdignity.org has an excellent document called 5 Wishes that will help you begin to think about making decisions for yourself so that others don't have to.

[Carol]

Thank every one of you who made this post richer by adding your unique insight and experiences. The 5 Wishes document is an excellent tool to guide you - Thanks for suggesting it Susan.

[Chrissy]

Oh but isn't it hard? You look at the beloved person (when you're both well) and find the idea of 'the end' unbearable. He looks at you and is no braver.

Thank you, Carol. You've given me courage to ask and to tell. I think it's good to write down one's wishes and to leave the letter somewhere where it would be easy to find. Just in case 'the worst' jumps out unexpectedly.

Also, I'd like to make my wishes clear about funeral and possible organ donation - if these are useful after a certain age.

[Judi]

You are so right! I work with the elderly and recently met a wonderful woman (a documentary filmmaker) who interviews people on camera. She has them look right into the camera and TELL her family what it is she wants. She has even used it in court successfully. I watched some of the videos and they are wonderful - such vibrant and definite people who know what they want when the time comes.