Saturday, February 20, 2010

Reports of Her Death Were Greatly Exaggerated

Well, it has been quite the week (or week and a half I guess it really is) since I last posted here. As I'd mentioned previously, my mother had been ill but the hospital did release her to a very nice nursing home down the street from our house for further rehabilitation. So I'd been visiting her every day and she was coming along, although not back to her old self. But after she was there about four days, they called and told me she was being sent back to the hospital due to low oxygen levels and irregular heartbeat.

After another long evening in the emergency room, she was admitted to the hospital and I went home and went to bed. When I got there the next day I ran into the pulmonologist who was treating her (whom I'd never met before) outside her room in the hall, and he told me she was very critically ill and pretty much said that she might not make it out of the hospital. He then asked if she has a living will, and whether I had signed a "Do Not Resuscitate" order for her. I said no, I hadn't, and since just yesterday she was sitting up eating turkey dinner and talking to me, I wasn't going to sign one now either. I got the impression he disapproved of my decision.

Now, my mother is 91 and a lifelong smoker, and yes, she was in pretty bad shape. Apparently she now has fairly severe Chronic Obstructive Pulmonary Disease (emphysema as we used to call it back in the day) and it had started to catch up to her. But given all her female relatives lived well into their nineties, I wasn't writing her off just yet. I felt she still had "a lot of good left in her," so to speak!

Nevertheless, I was highly worried about her after my conversation with the pulmonologist - and more so when I returned to the hospital later on to find they had had to entubate her and she was on a ventilator in the ICU.

I thought this was it and was thinking maybe I should sign the DNR order...I went to talk to the attending physician in the ICU, and thank goodness he wasn't as much of a Mr. Doom and Gloom as the pulmonologist. I asked him if anyone ever comes off these ventilators once they're on them and he said "Of course! In fact, your mother is responding quite well." So I told him to keep actively treating her but if her heart stopped not to revive her.

So there I sat, at what I thought was my mother's possible deathbed. She was on the ventilator and couldn't talk, she was partially sedated, but she knew I was there and could nod and squeeze my hand. I started to tell her what we all want to tell our mothers on their deathbeds, how much I appreciated all she had taught me, that I loved her very much, that I was sorry for all the times I'd been impatient with her when she needed me to do something for her, and so on. Tears streaming down the cheeks, the whole bit.

Finally I left and went home, took a Xanax and went straight to bed.

The next morning I got up and called the hospital with trepidation to see how she was doing, and was astonished to have the nurse tell me "Oh she's coming along very well, we're weaning her off the ventilator and she's doing much better."

I got to the hospital and sure enough, my mom was awake and although she still had the tubes in her mouth and throat to help her breathe, they weren't breathing for her anymore, and she could nod and gesture to try to make me understand what she was trying to say. She also could write! So, although her eyesight isn't good so her writing is hard to read, at least I managed to understand what she was writing on a pad of paper.

By the next day the tubes were out and she could speak, and was much better than she even was before she went back into the hospital. Apparently her biggest problem is the COPD and the levels of carbon dioxide in her blood were too high - which causes the blood to become too acidic and can affect the brain, make a person sleepy and groggy all the time (all the symptoms she had had previously) and it basically isn't very good for a person altogether. In fact, if it goes too high it kills you.

The reason she had gotten so much better is the ventilator had helped her get her blood gases back in balance the way they should be. If I had signed the DNR order, she never would have been put on the ventilator at all, as that would have been considered extraordinary/heroic measures.

Today she is down to no oxygen mask (just the little tubes that go into the nostrils) and she is eating solid food again and is no longer in the ICU. My aunt and husband and I all went to see her and had a nice chat while she ate her dinner.

First of all, let me say that I know the pulmonologist meant well, and because he had no idea what my mother was like or what her background and situation were, he was just being honest about what he saw her condition to be, and what its prognosis might be.

And I also want to say that anyone who is in the position of signing a DNR order for a parent (or anyone else) and does so, has my greatest respect and sympathy. I did it for my father when he was in a nursing home with Alzheimer's Disease at 92, and had no hope of recovery. I never had any regret about it and was relieved when he passed shortly thereafter, as I knew he was out of his misery.

But it isn't always as simple as it seems. You have to really know what your parent or loved one would want, and how they approach life. My mother always has a positive attitude toward whatever situation in which she finds herself, and keeps her sense of humor no matter what happens to her. Naturally when I thought she was on her deathbed I started thinking those thoughts that are supposed to make us feel better..."Oh, she wouldn't have wanted to live like this anyway, always on oxygen and not being able to smoke her cigarettes, and all..."

But in reality that isn't how she would have felt at all. When she was much improved the next day but still not able to talk, she was gesturing to the tubes and trying to communicate to me. I said, "You want me to take out the tubes?" She shook her head no. "Do you want to get better and go home?" She nodded yes. Turned out she was just trying to tell me she couldn't talk because of the tubes and was aggravated about it. The next day I told her my first thought was she was telling me to "pull the plug" and she laughed. That was NOT her intention whatsoever.

I'm just telling this story to remind everyone to have these conversations, no matter how difficult, on a regular basis with your elderly family members. My mother had signed a living will 15 years ago but I had no idea whether she still didn't want "extraordinary measures," nor under what circumstances she wouldn't want them. It's easy to sign something like that when you're relatively healthy and younger and think you wouldn't want to live with various bad conditions when you're older. But when you get to "older" you may think differently!

As far as I can tell, a living will is really more for the family member who is in charge of the person's medical decisions when they are unable to speak for themselves to be able to make the difficult decisions. If an ill person really doesn't want extraordinary measures to be taken, and you as the caregiver really know it, you can produce the living will to legitimize it and enable the hospital and health workers to proceed accordingly. That is because they default to the "do everything you can" option unless told otherwise.

But even if a person has a living will, be sure to check with them occasionally to make sure you understand their real wishes and what wishes they would have under which circumstances. It can be a matter of life or death. No matter how well-meaning doctors may be, the only person who can make that final decision of whether to continue treatment is the person whose life is at stake, and we as caregivers and loving relatives need to be sure of what that decision would be.

30 comments:

Amanda said...

Well said, Maui. It's such a hard call. And I'm so glad your mother is doing better -- that's wonderful!

Anonymous said...

You have to express more your opinion to attract more readers, because just a video or plain text without any personal approach is not that valuable. But it is just form my point of view

Sometimes Saintly Nick said...

Excellent post! I'm happy your mom's demise wasn't on God's agenda.

I have a living will that basically says "don't pull the plug." When I gave a copy to the VA hospital, a nurse said "That's not what a living will is suppose to say." Strange.

Suzan said...

Such wonderful news about your Mother.

My Mom, 79, also has COPD (my Dad died of it 20 years ago) and her ancestors lived into their mid-90's, so I am familiar with its treatment although there is much better care now.

Thank you so much for taking the time to share your experience with us.

I've learned a lot from reading your thoughts. Your Mom is lucky to have you as a daughter.

Peace to you and yours.

S
____________

Fran said...

I've witnessed this situation go both ways- well & badly.
A few years ago, my 85 year old Aunt had a massive stroke. She had been living independently, and now she would be blind, perhaps not be able to walk, and would have to live in a care facility- and was on a breathing ventilator. Her adult children were very overwhelmed with having to make the decision to pull the plug, her medical directive said quality of life, no feeding or breathing tubes. The doctor's advised there would be no recovery.
Her medical directive was clear & they stopped the breathing machine. It was another day before she passed, surrounded by her immediate family.

Another relative who recently had several major surgeries... broken shoulder, repeat surgery to install a plate, cancer, chemo & then a broken hip.... said he did not want another major surgery, (infection of the broken hip replacement) but was talked onto it.... it has been a series of downhill struggles. He's lived in the care facility since the hip break hospital stay. They just told him they are discontinuing therapy because they have no more progress to make. His legs have become weakened and he is using a wheelchair. They will do some less frequent maintenance therapy. This a man who was riding his bike 10 miles a day into his late 70's.
If I make it to 80 something & say no more surgery... I want it respected!


a good friend of ours 40 something, was working out & had a massive brain aneurysm-he was in ICU for months, many surgeries... he had no medical directive, and his nurse partner of 12 years were not legally married.
She knew Fred would not want to live this way... his Mother who lives in Ohio, came to Oregon, declared legal power of attorney-
and went w full medical intervention.
He can't walk, barely speaks, needs constant care & will never work again. His 80 something Mother moved him back to Ohio to live in her home.

My Mom is 85 & has Alzheimer's, and spinal stenosis. She has a host of medical issues.
a few years ago when she had to go to a care facility she dislikes living there. Her medical directive is very clear.

For me it comes down to quality of life.


FYI-- there are different levels of just DNR yes/no... you can opt to

Fran said...

Laws vary from state... but this is a good reference link

http://www.clevelandclinic.org/bioethics/policies/dnr.html

susan said...

What a beautiful daughter you are.
Such a precious collection of thoughts on difficult issues which show us that life is really never 'black and white.' Glad for the continuing days you will share loving life with your mom.

Vern said...

WOW - thanks for sharing that! I've yet to need to make that kind of decision, but not looking forward to it. I hope this clears up and you're able to talk a lot more about things that you haven't.

:) Thanks again...

Mauigirl said...

Thanks, everyone, for your comments and good wishes about my mother.

Nick, that is exactly the kind of feeling I got from the doctor, that he felt I was "supposed" to not want my mother to have any extraordinary measures.

Fran, what sad stories of people who were once so active being struck down. I know not everyone would want to live like that and am so glad there is the option of living wills and DNRs for those who value quality of life above all. It is very sad if their wishes are not followed. It all comes down to having the choice and having your wishes known and honored.

Fran said...

Oh my, what a moving post. I have read it twice now and still not sure what to say.

First of all, I am so glad that your mom is doing better!

As to what happened, I think that you are expressing the difficulty and challenge of these things, things that were not available for most of history, in terms of how we care for the sick and dying.

It is very easy to just take a position and think that is that. It is another thing altogether to have to encounter this in life and with one's beloved parent, or beloved anyone.

That is why I am always of the mindset that there are often more questions than answers.

Take care and be well beautiful Mauigirl.

pygalgia said...

Glad that your Mom is doing better.
And, yes, those "end of life" decisions are incredibly tough. With my own mother, thankfully, she gave a very clear, detailed set of instructions as to what and when she wanted. So my sisters and I found it rather easy as to when we signed off on the 'DNR' orders. It was still very emotional, but we knew that we were following Mom's wishes. She passed peacefully on 1/23/09, so it's still rather fresh in my mind.
Sounds to me like your Mom is lucky to have such a caring, compassionate daughter. Best wishes!

Fran said...

Ooops! my post cut out.... different levels of what DNR means to you.

True DNR means hands off.... but comfort & specifics can be customized. If there is hope of recovery, I am willing the have some intervention.

Christopher said...

These are the hardest decisions we ever have to make in life. There is no right or wrong answer. All we can do is ask questions of our loved ones, the doctors and follow our conscious.

Sometimes, when a person is elderly, and ill, they surprise us and they rally. Our life force is incredibly strong and with the help of good healthcare, a harrowing situation can turn around.

I hope your mother continues to improve and gets well again. She's lucky to have you by her side.

Mauigirl said...

Fran, you're right, these are decisions that would not need to be made during most of our history. Mom would probably have died not long after she first got sick and would have been considered to have lived to a good old age at that. With the advanced medicine we now have comes greater responsibilities and decisions that must be made. And nothing is ever black and white, for sure.

Pygalgia, I'm glad your mother was so detailed in her wishes and you and your sisters were able to follow them and give her the peaceful passing she wanted.

Fran, yes, I did know about the different degrees of DNR, which is good; I was able to tell the ICU doctor not to revive her if her heart actually stopped but otherwise to treat her actively. That apparently did not require me to sign anything, however. He just noted it in the records.

Mauigirl said...

Christopher, meant to respond to you as well - thanks for your thoughts and good wishes for my mother. I know, the life force really is strong - the ICU nurse told me my mother is a very strong person for her age. I think she is not ready to give up just yet!

Liberality said...

And the best thing is that your mother heard you when you told her all that was in your heart. She knows how much you love her. Take care, both of you.

nonnie9999 said...

mauigirl, you're a good daughter. i hope your feisty mom is doing better and will be home soon. hugs to both of you.

Ruth Hull Chatlien said...

Thank you for telling this story and putting your thoughts and experiences down. It has caused me to realize there are more nuances to this decision than I realized.

I hope your mom continues to improve.

Randal Graves said...

Glad to hear that your mom's doing better. And getting any of this stuff down in writing at any point is always a good idea. One never knows.

TomCat said...

Mimi, as you know, I've been following the situation on FB. I'm so glad that she's doing better. Frankly, I think you should complain th the hospital about the pulmonologist. A weaker person than you might have taken his advice and allowed a loved one who wanted to live to die.

Hill said...

Sending cyber-hugs to you and your Mother.

Big hugs.

jmb said...

I'm glad to hear your mother is doing well after that. These decisions are not easy when you are put on the spot like that but luckily you made the right one for you both.

Good luck to your feisty mother, may she have some good years left to enjoy.

Mauigirl said...

Thanks, everyone, for your good wishes about my mom.

TC, I can't really say the pulmonologist did anything wrong, he didn't actually advise me to sign a DNR, it was just a feeling I had that he thought I should; I think he really was just preparing me for the worst in case it happened...but it does go to show you how doctors can influence outcomes just by their manner. I think many doctors don't realize how much their own attitudes can affect others.

TomCat said...

Good point Mimi. I agree there is no basis for complaint, but plenty for concern.

libhom said...

Wow, that points out just how important second opinions can be.

Mauigirl said...

TC, yes, exactly.

Libhom, absolutely. And that goes for every serious illness anyone has. I always felt bad that a friend of ours died of bladder cancer and she refused to get a second opinion on treatment because she liked her doctor. I always wondered if some other doctor might have recommended a more aggressive treatment for her and saved her.

Little Merry Sunshine said...

Thanks so much for sharing your story. We went through similar things with my Nana over the last 7 years of her life. Two years before her death, she almost died a couple of times thanks to medical "advice" that was given on-the-run by doctors who didn't really know her or what she wanted. Fortunately, my mom was an amazing advocate for my Nana's wishes and knew that the doctor was giving advice out of the context of the full situation.

Advance directives are absolutely necessary, but should be revisited every few years, in my opinion. Advance directives should be made in consultation with family members, legal counsel, and medical professionals. To call this a "death panel" is irresponsible and dangerous. Everyone should be given the opportunity to die with dignity and respect. Advance directives, combined with loving caregivers (both related and non-related) do that.

Mauigirl said...

Thanks so much for your comment. It must have been so difficult to go through that situation for 7 years with your Nana (I called my grandmother Nana also!). You sum it up well - advance directives plus loving caregivers are the way to go, with proper advice.

D.K. Raed said...

sorry to be so late here, maui. I'm just catching up. Hope your mom has continued to improve. She sounds quite tenacious (so that's where you got it from).

You're absolutely right that we should relook at our Living Wills/Advance Directives every so often. What I put in mine back in the '80's is no longer exactly how I feel. Medical science has advanced tremendously since then and so has my attitude. I still don't want "heroic measures" but my definition of those measures has changed.

I don't think a ventilator, especially in your mom's case where you saw it could eventually be removed, should be considered an heroic measure.

May your mom and you and all you love continue to live long and prosper!

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