Morals, Ethics, and The Ultimate Choice

Regular ElderBlog readers will recall that Mom was hospitalized back in April.  During the two-week stay, she was run through every big machine in the facility’s inventory: MRI, CT, EEG, TEE, EKG…you name it.  She was IV’d, catheterized, and spoon-fed.  She was evaluated and rehabilitated.  In other words, she got the full treatment.  Everything they could have done, they did.

Some of the lesser bills have been received and paid already.  We now have the bill; the one from the hospital with all of the big numbers.  It’s in the tens of thousands of dollars.

Mom wanted (demanded!) to know the final cost and I told her.  I also told her how it would all be paid.  Thankfully, we’re going to wind up paying only a small fraction of the total out-of-pocket.

Mom considered this for several days.  She also remembered that my father spent long months in agony while being treated with antibiotics before finally passing away last year. She remembered deciding then that she didn’t want to suffer the same fate.  She put all of the factors together and told me quite earnestly that she never wanted this to happen again.

“You never want what to happen again?” I asked.

“I never want to be exposed to all of those machines again.  I don’t want to receive all of that treatment again.  I don’t want to spend that obscenely large sum of money again no matter where it comes from.  I want you to see to it that this won’t happen again.”

I explained to Mom that it is my role as caregiver to see to it that she is as comfortable as she can be without my playing god.  What she was asking me to do defied that definition.  She held her ground.

So I went pragmatic.  “If the same thing happens again (you’re found unconscious on the floor), the Piedmont Place medical staff is going to follow set procedure in rendering immediate care, and will have you transported to the hospital where they will follow procedure in determining causes, and seeking and implementing solutions.  This is what they’re supposed to do.”

“I don’t want them to do it.”  Mom was serious.

Rather than argue with her, I decided to pursue the issue elsewhere.  My first contact was with our lawyer who not only didn’t say she couldn’t get her way, but did say that the state provided a legal document which ensures that she does.

It’s called a MOST form – Medical Orders for Scope of Treatment: a physician order sheet issued by the state of North Carolina Department of Health and Human Services.  MOST asks the patient to select the level of intervention to be given in each area of treatment.  The state mandates that the patient’s doctor complete and sign the document in the presence of – and at the direction of – the patient.

I was surprised at this development to say the least.  It took away my arguments in opposition to Mom’s wishes, and it put me in a very uncomfortable spot.

—–

My mind raced with the possibilities.  I could see the dire circumstance when a medical professional would say, “Your mother needs (this, that or the other thing).  And as her Caregiver and Healthcare Power of Attorney, I would be obliged to say, “No.  Check your charts for the MOST form.  Mom does not want that kind of treatment.”  To my way of thinking, this is the same as me saying, “Let her die.”  It seemed to me that I was at least on the edge of playing god.

I could see the medical professional stopped in his tracks; prevented by a piece of paper from doing what he knew to be necessary to save a life; to do what he believed to be the humane thing; to do what he was trained to do.  I imagined the impact such a scenario would have on him as a person.  And what if his belief system differed from Mom’s?  Would he be obligated to follow his convictions or hers?

And what of the moral argument?  This God-fearing woman was essentially signing her own death certificate.  She’s playing god, and forcing my complicity.  Knowing the end of someone’s days is God’s job, not Mom’s or mine.  Would this displease Him?  Would He shut us out of our eternal rewards?

—–

Is a MOST form different from any other advance health care directive?  Is it any different from a DNR or a DNI?  Is the self-directed restriction of medical care the moral equivalent of suicide?

—–

Since the Bible forms Mom’s belief system, I went there for counsel.  It is my personal belief that the myriad rules of The Old Testament were necessary before the time of Jesus.  I bring this up to explain why I did not consult The Old Testament.  I believe that the teachings of Jesus provide all the guidance we need today; specifically Matt22:37-40 (CEV) in which Jesus says:

“’Love the Lord your God with all your heart, soul, and mind.’  This is the first and most important commandment.  The second most important commandment is like this one. And it is, ‘Love others as much as you love yourself.’  All the Law of Moses and the Books of the Prophets are based on these two commandments.”

That’s all we need.  The Son of God said so.  But the closest He gets to mentioning suicide is the “love yourself” part. 

A century later, the Apostle Paul wrote (1Cor3:16-17 The Message)

[Y]ou are the temple of God, and God himself is present in you…No one will get by with vandalizing God’s temple…God’s temple is sacred—and you, remember, are the temple.

In its proper context, Paul is saying that God will deal harshly with someone who harms another.  A bit later (1Cor6:20 The Message), Paul wrote:

The physical part of you is not some piece of property belonging to the spiritual part of you. God owns the whole works.

The context for this second scripture comes a little closer: he’s saying that we should not do things that are harmful to ourselves.

All of this is a long way to go to find an answer to the question: Is the self-directed restriction of medical care the moral equivalent of suicide?  And perhaps now we should add the question: Is suicide necessarily an act of self-loathing or self-destruction?

I am not nearly smart enough to answer either of these questions.  I think the answer lies in the interpretation or belief system of the individual.  But I do know that today’s medical technologies were not available to God’s children a hundred years ago, or a millennium ago, or in Jesus’ day.  There cannot be a reasonable person alive who would think that God disapproved of the deaths of all of His children for all of time because they failed to use technology to sustain themselves beyond their natural lifetimes.

God never intended for humans to last forever.  We know this because He did not create an earth of sufficient size or resources to sustain all of humanity forever.  The notion is ridiculous on its face.

Let’s approach the matter of morality from a different direction.

God knows everything.  There are many biblical references to support this.  He knows the beginning from the end.  He knows what’s in our hearts and minds.  He’s known what our decisions would be since before He even created our species.  If we accept this to be true, then He must know that Mom’s heart is filled with love for Him, and that her choice is driven by her best reasoning and purity of spirit.

—–

What about the impacts her decision might have on others?

Life is built into us.  By that I mean that it’s in our DNA to live; to survive.  And because we are necessarily relational beings, our hope is that those who are close to us will similarly survive.  When someone close dies, we deeply feel their loss.  There is little relief in knowing that it is a certainty that each of us will one day die.  The manner of death, therefore, is a non-factor in the emotional aspect of losing a loved one.

The first principle of medical practice is ‘do no harm.’  The practitioner’s training and experience then endeavors to do more than just no harm; they work to do good.  There isn’t a single one of us whose life hasn’t been touched to the good by myriad hard-working, well-intended doctors, nurses and aids.

But these highly trained professionals are also human beings with many of the same values as the rest of us.  How would one of these deal with orders that essentially say: ‘Don’t do what you can do?’  I can’t begin to know.  But the fact that these good people spend their decades-long careers continually dealing with life and death suggests that they do find ways to cope.

—–

The meeting was set and Mom dressed up for it.  Lisa and I walked into her room followed shortly thereafter by the head nurse, the section nurse, the social worker and the doctor.  Mom was undaunted by the number of souls crowded into her room — all focused on her.

The doctor conducted the interview.  She explained the choices available on the MOST form and the consequences of each choice.  She asked Mom about her wishes and recorded them on the form.  “Comfort measures” and only short-term antibiotics were selected as the desired treatments.  Great pains were taken to emphasize the meaning of each selection.  At one point, Mom went so far as to take over the meeting to explain her wishes at length.  If nothing else, she proved that she was of sound mind at the time.

The professionals in the room understood the proceedings without question.  I, on the other hand, had many…the questions I’ve approached above.

While I am now fully informed and armed with an official document as backup, I am still somewhat uncomfortable with the prospect of using its powers someday.

For her part, Mom is content in the knowledge that her wishes – for her body to comfortably expire so her spirit can rise into heaven – have been sanctioned and will, most likely, be followed.

God knew since the beginning of time that it would be this way.  I’m guessing that He can’t wait to see her.

Advertisements

About FredMarx

Old enough to have wisdom; young enough to learn.
This entry was posted in Living life at old age and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

3 Responses to Morals, Ethics, and The Ultimate Choice

  1. fredmarx52 says:

    Diana was one of Mom’s Sunday School students years ago. They’ve kept in touch, and Diana was moved to e-mail a response to this post. With her permission, I now present her generous thoughts here.

    Dear Fred,
    Your post about your mom’s MOST form decision was very thought-provoking. I have re-read it a couple of times yesterday and today. I’d like to send you some thoughts I wrote whenever it was that I first read the post. For now I’m just writing a quick note to tell you that my heart goes out to you. The situation my family faced with my mom’s illness last winter was different from Edith’s situation, of course, but some of what we went through may be applicable. I hope my recollections can reassure you. If they aren’t helpful, disregard them!

    I too felt that we had “signed Mama up to die” when we got DNR orders for her, in spite of the fact that we knew she was terminally ill and she had written an advance directive saying what kinds of care she wanted under those conditions. Basically all the DNR did was restate her previous legal documents in a medical form to protect her from someone else’s pre-determined policies taking over in an emergency.

    I don’t think putting a limit on life-extending treatments is at all the same thing as suicide. For one thing, according to how I understand it, a patient can still opt to get more treatment if she’s mentally capable of asking for a change. Her health care power of attorney person can probably ask for more to be done as well; I don’t know. The orders just keep anyone from automatically imposing extraordinary treatments on her that she has said she doesn’t want. For another thing, suicide is actively bringing on death intentionally. When there’s an untreatable disease bringing on death, sometimes it is a kindness not to overtax the suffering person with a lot of well-intentioned but invasive/painful procedures. A couple of relatives offered to bring her food even after the point where she no longer felt the need to eat. Anything beyond Jell-O was actually a strain for her to swallow and digest. Then she could only take water. No one tried to pressure her to eat, but if they had, Rachel and I would’ve had to defend her from the pressure.The same idea would apply to making her take medicine that had no benefit but only made her miserable.

    No doubt in the long process of working out the MOST thing with your mom, you heard people talk about “prolonging life” as one thing and “prolonging dying” as another. I’m thankful for you all that Edith is not terminally ill, so the reasoning above might not all apply. I would love for her to live a long time. But something could happen to her that endangered her life suddenly, and she will now be prepared to be more in control if that occurs.

    “Comfort care” can go a lot further than it sounds like. We found that out because Mama was in Hospice and their standards allow comfort care but not more aggressive treatments. Mama wanted to do oral chemotherapy even though the chances of its helping were slim. The hospice people didn’t exclude her from their services, considering that the kind of chemo she was taking was in fact “comfort care.” And she could’ve opted out of the hospice program at any time. So I think a patient who isn’t enrolled in hospice would have even more leeway to revoke a MOST order if her situation changed and she wanted to take advantage of something outside her original plan.

    I know it hurts a lot to see a parent decline (I can’t even imagine the long-term kind of decline you’ve already witnessed — that has to be way harder than the few months Rachel and I went through), and I can see you put a lot of thought into the situation. I’m certainly not telling you how to feel, but I did want to say I’m sorry you had to face that, and I think you gave your mom good support so she could do what she feels is best at this time. It sounds from your previous post about respect that Edith is really being assertive about her wishes in various areas lately. I salute you all for respecting her desires even when it’s really hard.

    ********************

    To what is above, I’m adding these five thoughts (let’s see if I can be more concise this time!) As I said at the top of the earlier notes, please disregard my input if it is not helpful. I wouldn’t want to stick my nose into y’all’s business, but my heart does go out to you all.

    1) The issue of money is what brought up Edith’s statement. I think that probably makes it harder for you to accept her decision. Money makes everything complicated. More care in this case costs more money, and your mom is opting for less care. In your place, I’d wonder if she was just doing like old ladies do and not wanting to be “a bother” or cost anyone any money. But she expressed other reasons for choosing the MOST, and you can evaluate whether her logic now is consistent with her previous statements made before she got her hospital bills. Just because she is choosing a less-expensive death (way out in the future, I hope), that doesn’t mean that she’s placing a cheap value on her life or that you’re doing so by following her requests.

    2) The idea of “playing God” could go either way here. As you said, it’s His business to know when a person’s days are going to end. If God is calling a person home, then the professionals have to respect that there’s some limit on what they practically can do for him or her. There’s some point at which nothing can be done. So a sky’s-the-limit approach to treatment may be playing God in your mom’s view.

    3) A doctor probably isn’t going to come to you as in your hypothetical situation and declare, “Your mom needs this treatment.” He or she is going to offer certain treatments with the understanding that they might have a 20% or a 60% chance of this or that outcome over this or that time frame, supposing nothing unexpected comes along. You get the picture. I only read very quickly, several months ago, your posts about Emery’s death, but I seem to recall that things were very complicated. By not taking the exhaust-all-alternatives road, you aren’t necessarily condemning your mom to die any more than you could force her to live with all her systems shutting down.

    I’m sorry I can’t seem to write about this topic without painting sad word pictures.

    4) There’s another thing that I think is entering into your feelings about the topic and making it harder for you. You remarked that the manner of death is not important to our grief. Oh, if only that were true. It’s not, and I think you recognize deep down that it’s not. People feel different about a peaceful death in their loved one’s sleep than they do about a harrowing death after a long and painful illness. When the sad day comes that you lose your mother, you’ll grieve for losing her, and you’ll grieve for all kinds of other stuff, too. At least, if you’re like me at all, you will. Sometime you can ask me about that if you wish, but I don’t feel like writing all the details now. You’ll grieve for extremely minor decisions you think you ought to have made just a tiny bit differently, even though everyone around you will be reassuring you that you did all that was reasonable and right. You seem to be doing that already. So it will hurt a lot to wonder “What if…?” I hope it will also count a lot to know that you were always acting on your mother’s sound-mind wishes. Even when they conflicted with your sonly wishes.

    5) You are only responsible for your own actions and decisions, so I hope you’ll have peace about the “complicity” thing. Enough people have quizzed Edith and evaluated her situation that someone would surely have spoken up if they thought she were doing anything wrong. The folks who deal with the elderly and ill all the time as a career aren’t blaming Edith, and they aren’t blaming you. So I hope you won’t blame yourself.

    Going back to the money thing. Rachel remarked to me as our mom was in the hospice program (being cared for at her home by us) that it’s amazing what good care a patient can get in the form of nurses and aides and helpful equipment to make life easier, once you’re no longer paying for a hospital room and a lot of fancy tests. I think Mama got much more tender care once she was out of “the system.” I’m glad she didn’t miss out on that.

    I forgot to clarify one thing that Fred felt was unclear: Edith first brought up her wishes in the context of a discussion of hospital bills, but then she went on to demonstrate that there was much more on her mind than saving money.

    She and I had a nice chat on Monday, and she brought up the MOST then. She spoke of several reasons for wanting a document like that in place. I’m glad she can speak for herself now, and that she won’t have to wonder “what will happen when I can’t speak for myself?” She sure was spry and mentally on-the-ball when I stopped by! Good grief, it’s hard to keep up with her in some ways. She spoke of her children and grandchildren with a lot of pride. I’m thankful that she is once again up to seeing visitors from time to time.

    I won’t stick my nose into y’all’s business any more than that. I’ll just commend y’all for supporting your mom in this situation. And I hope she lives a long time yet.

    Diana

    • fredmarx52 says:

      My reply was written just before Diana provided her last few paragraphs.

      Diana, bless you for your thoughtfulness. You honor Mom (and me) with your consideration for our plight.

      My post was intended to provoke thought. That’s the beauty of blogs. After you light the fire, others can choose to fan the flames or quench them. It’s about personal perspective and values. This post was borne of my self-examination of values, and I felt that the exercise would be of benefit to others (as, indeed, is my hope for ElderBlog as a whole).

      My only quibble with your thinking is that Mom’s decision-making was motivated by money. Sure, the amount was astonishing and obscene. But Mom was absolutely sure she was on her way out by Easter of this year. You can read this sequence in my April ’11 posts. She’s ready to go. She WANTS to go. She wants to be with Jesus. Her work here (she thinks) is done. She’s the queen of all she surveys at Piedmont Place; but even that doesn’t quench her desire for the riches of heaven. Her wanting a MOST had almost nothing at all to do with money. It had everything to do with both prolonging life and prolonging dying, as you so accurately put it.

      My concerns about complicity were expressions of the process of filtering through my values; they were not a conclusive statement of that process. The benefit of all of this, for me, was the realization that God has known since forever that this situation would arise; that Mom would take the course of action she’s taken, and that she has nothing in her heart but love for Him. The God I know isn’t necessarily the one defined by so many church interpretations of the Bible…He transcends dogma. Churchians will, I think, be surprised at how He dispositions each of them at the appropriate time.

      And finally, I have to grant you your point about the manner of death being irrelevant. My interpretation was clinical; mathematical. It failed to recognize the depth of true human emotion. Pop’s death last August was a prolonged and arduous thing. We were almost glad when he died. You can read all of that in the August ’10 posts. That said, however, there were other forces at work to guide our feelings about his passing.

      But back to your point…if I have learned nothing else about grief, I have learned that we each grieve differently thus making the manner of death, indeed, relevant. When Lisa’s mother died after a long fight with cancer four years ago, I thought she was grieving a full year before death. I was genuinely concerned for Lisa’s well-being. It took a conversation with a clinician to quickly reveal that we all deal with such things differently. It seems so obvious, I know. But this point didn’t penetrate my skull until that moment.

      I hope you will refer others to ElderBlog so that they, too, can experience the stimulative process you and I have now had and to reap the benefits from their own deliberations. And please let me repeat that your considerable (written) effort should be part of the dialog entered as a response to the ElderBlog post. If you will do that, I will follow it with this response. The more we all participate in a thoughtful process, the better we will be for it.

      Have a Good evening ! Fred

  2. Ahmad Haamid says:

    I really enjoyed your post and I know the battle you are having instead yourself. I faced this same ordeal when my father passed away, a few years ago. Always know that you are obeying your parent’s wish which is always a blessing. Thank you for sharing.

Comments are closed.