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Please…

It’s the text message that you never want to get at 3 a.m.

“Dad is in the hospital. They have ruled out a stroke. They think it’s an atypical seizure but are waiting for results to find out. Right now he’s unconscious but they are waiting to move him to the ICU.”

You may never want to get it, but eventually it will come. Someday, for someone you care about. For me, it came almost two weeks ago.

I don’t normally write about things that are this personal. In fact, I’ve debated about writing this post, going back and forth. It’s been a struggle with the pros and cons of writing something that is far more private than I feel comfortable sharing – versus providing an anecdote that may actually be helpful for someone.

Ultimately I decided that it even one person acts on this blog and it helps them, then it is worth it. I hope you are that person.

Trauma

My father came back from a late night meeting on Tuesday, February 25. It wasn’t supposed to be a late night meeting, it just turned out that way. It had started as a meeting during normal business hours, and extended well into the night.

As you probably guessed, it had been a particularly stressful meeting. As often happens with stressful days, he began complaining to my mother about a migraine headache, probably caused by the stress of work. He was also upset because the night had been intended to be a rare “date night” between him and my mother, and now that time was wasted. (My father and mother will celebrate their 50th year of being together this year, and they are very much in love and cherish the time they spend together.)

Over the course of the evening the migraine got worse: in fact it got so much worse that he began to get nauseous, and began to have problems standing up. My mother began to get alarmed and called 9-1-1. The EMTs arrived and took him to the hospital to run some tests. At the hospital, the nurse came in to take my father’s medical history, and during the course of the interview he crashed.

My mother describes the scene as something akin to any one of a number of familiar medical shows: alarms blaring, doctors and nurses running into the room, pushing her out to make room for medical equipment, shouts for medication. At this point well after midnight and it was extremely clear that this was not going to be something that was a simple visit to the Emergency Room.

She called my brother, who lives about 2.5 hours away. He immediately drove across three states and arrived just before my father was sent to the ICU. That was when he sent that dreaded, awful text.

It’s important to note that neither my mother nor my brother are prone to being overly dramatic or quick-to-panic. It’s generally understood in my family that if either one of them communicates a problem, it is a serious one. Sure enough, this was.

My father spent the next three days in the ICU, unable to communicate. My brother sent me periodic texts and phone calls giving me updates. During that time we tried to understand exactly what was going on, just how serious it was, and just how much help I could be.

Should I fly out to the east coast?

No, not yet. It doesn’t appear he’s in any danger.

How serious is it?

We don’t know. The doctors have ruled out stroke and a tumor. 

Is he conscious?

In and out. He’s going in for a MRI tomorrow.

Then, on Thursday evening…

Book your flight. He thinks he’s dying.

A Week-and-a-Half of Hell

By the time I arrived on the East Coast, everything felt surreal. My brother, Drew, picked me up at the airport and almost immediately pulled the car over before we even got off airport property. He looked at me, and I could tell what he had to tell me was beyond serious. This was “the talk.” He was trying to prepare me for what I was about to see.

“Tonight,” he said, “We’re going to have to have a big family meeting about what we’re going to do.”

I nodded. The updates that he had been giving me since the “event,” as we had been coming to call it, had gotten worse and worse. There was a very real possibility that my father was not going to live through the weekend.

He began to tell me about the tests that had been run, and the bewilderment of the doctors (plural, at one point in time his case had nine different doctors sitting around a table discussing what could be going wrong, as no one had ever seen what was happening before. It sounds so trite to say, but unfortunately this was true).

Now, if this sounds a bit over-dramatic, I should probably point out that my father is also a surgeon. He’s spent the last 35 years saving people’s lives (and bringing people into this world), and as a result both Drew and myself (and my mother) have been very familiar with hospitals and medical procedures. Despite what they show on TV, most of the time illnesses are more easily diagnosed than what you see on a weekly episode of House. There is a systematic approach that is taken to eliminate possibilities and find the correct diagnosis.

This time, though, he was confusing everybody.

Because my father is a medical doctor, he comes into contact with all kinds of “bad stuff.” People come to see him because they are sick, after all. As a result, he was tested for more illnesses than I an even count or remember: Lupus, Menengitis, HIV, Herpes, Alzheimers, Lyme Disease, Stroke, Cancer – the list goes on and on. Anything and everything that he could have possibly come in contact with his patients were explored.

All came out negative. Physically, if it weren’t for the fact that the EEG was going crazy, it would appear that he was strong as an ox.

Listening to Drew tell me these things, though, and explain in a calm, rational voice what’s been happening (that’s the way he is), did not prepare me for seeing my father in that hospital bed.

It Only Happens to Someone…

Even as my father aged, he never exhibited any signs of weakness – neither physically or mentally. He has always been one of those people who is “scary smart,” graduating with his Ph.D from MIT in Metallurgy at the age of 24, before going on to get his MD and become a pelvic surgeon, making advances in the science of microsurgery.

I say this not in any form of braggadocio, but only to illustrate just how I have always seen him: rock solid and seemingly always at the peak condition of physical and mental fitness. To my father, “part time” meant cutting back to 80 hours a week of work. Throughout my entire life, he has always been consistent and reliable. That’s just who he was.

Now we were just trying to determine whether or not he was going to be able to live through the weekend.

Any hope that I had been holding that Drew was exaggerating (again, that’s not his style, but I still held on to a kernel of deluded hope) was dashed to pieces the moment I saw him. I knew right then and there that this “big family meeting” Drew was talking about was likely going to tear us all to pieces.

Up until that point in time, Drew had been taking the lead for the family. My mother had gotten cataract surgery the day before the “event,” and was not able to drive. As it was, she could not see very well and Drew had to not only be her chauffeur, but also explain to her some of the documents that the doctors and nurses presented her.

When it rains…

In any event, it became clear that the decisions for my father’s health care were going to have to be taken over by someone other than himself. My parents have always been excellent planners, and ave spent their entire lives planning for nearly every contingency, including this one.

The Proxy

Both of my parents had given the other the power to act as a “Health Care Proxy.” Different states have different terms (California, for instance, calls it an “Advanced Health Care Directive“(PDF)). You may have also referred to it as a “living will.”

Imagine your worst nightmare coming true: your parent, or husband, or wife, is suddenly in the hospital. You are emotionally distraught, and all you want – what you really want – is for them to get better. You are barely holding yourself together, and you feel helpless, completely at the mercy of these unintelligible medical tests – tests that require either a Ph.D or a MD to even pronounce the terms.

It’s hard to imagine anything could be worse at this point, it feels overwhelming, like you’re barely holding on to a thread to keep your own sanity.

Then the doctor comes in and tells you that they want to do a procedure that is highly risky, and may not even work. But they’re run out of choices. Maybe they want to try a very dangerous drug, but it could leave your loved one a vegetable. Maybe they want to cut into their skull to do a brain biopsy, an extremely dangerous surgical procedure but they “think” they see something. Maybe they want to do something that goes against your moral, religious, or other personal views, and you know your spouse (or parent) would not want this to happen.

The doctors insist. They know that there are risks involved, but it’s “the only way.”

“That’s not what they would want,” you say. You know this to be true. You’ve had these conversations numerous times. You don’t want to put them at that kind of risk.

“Can you prove that’s what they want?” they ask.

Well, can you? Because they can get a court order to proceed based upon the best medical advice. What can you use? Can you prove it?

With a proxy, you can. It’s a document that shows that your loved one has given you the power to make the decisions they would want in case they are unable to do so.

DO NOT ASSUME THAT YOU OR YOUR SPOUSE HAS THIS RIGHT AUTOMATICALLY.

Doctors have – and will continue to have – the power to bring in the State to override a spouse’s decision. The trauma of these legal and political interventions is incalculable.

My father – thankfully – had prepared for such an event, even though he never believed he would ever need to use it. My mother brought that proxy document with her the next morning.

The hospital staff knew exactly what to do, and from that point onward there were absolutely no questions or problems about the decisions being made for his care. At no point in time during the next week were my mother’s wishes contradicted or second-guessed.

In our case, the options that were presented to us varied in degrees of risk and invasiveness. Had the neurologists and neurosurgeons agreed to do a biopsy, for instance, we may have been placed in that very situation I mention above, as that’s not what my father would want. Thankfully with the proxy it never, not once, became a test of wills about what to do and how to proceed. My mother had the ultimate and final say-so.

Lasting Impressions

This past week has made me realize just how fragile our world – and our lives – really can be. A headache turned into a Code Red in under a half an hour. Instead of making decisions about an upcoming vacation with my father, my mother was coming to grips with the possibility of making end-of-life decisions.

As for me, I’ve been thinking non-stop about my mortality – and the mortality of those I love. I’ve spoken with my wife about this, and while the general discussion of death and dying makes her very uncomfortable and emotional, she has also seen just how bad things can get (she flew out mid-week to help me take care of my parents, as Drew was forced to return home due to his own family obligations).

If we had had to deal with some court stepping in, mandating some treatment that we didn’t want on top of all these emotions, it’s not clear how or any of us would have been able to cope. A nightmare would have turned into something even more dark and hideous.

I’ve had a harsh lesson in reality this past week-and-a-half:

It doesn’t matter how good you are, how strong, how smart, or how capable.

It doesn’t matter what you want or what you don’t want.

It doesn’t matter how fit you keep yourself, or how you try to keep your wits sharp.

At some point in time, those decisions will be ripped from your hands, taken from you with a violent and unstoppable force. It is an unfortunate truth in life, and pretending otherwise can and will make a horrible situation much, much worse.

I did not have a proxy or a living will drawn up. I started thinking about the things that could have been done, things that I would not necessarily want done to me if I were in that place, suffering from that illness. Would my wife have the strength to cope with any illness I have plus the added stress and pressure of the State stepping in? (Oh wait, you think the State won’t insert itself into a personal case? Think again.)

No, no she could not. Neither could I. If she were lying in a bed and some bureaucrat stepped in and tried to keep me at arms length from fulfilling her wishes, I honestly don’t know how calm, rational, or complacent I could be.

I honestly think I would likely hurt someone if they tried to do something like that, which would only make things worse.

Searching for the correct form on California’s government website took almost no time at all. For once, it’s even written in Plain English. It took all of about ten minutes to read and fill out. California’s document is only five pages. Some states require even fewer.

If you live in the United States, please, please go to your State’s form and fill it out. No one knows better than you what you want, and no one will protect your interests (and those you love) better than you.

Do it now. Don’t wait. All it took for my father was less than a half hour for the seizure to take hold and incapacitate him. If it hadn’t already been done and easily accessible for my mother, there’s no way it could have been done.

Here: I’ll even do all the hard work for you. At the bottom of this blog I’ve found the correct links for you. All you have to do is click on it.

Once you do that, do not keep it a secret. Let people know what you want so that there is no ambiguity. You may remember the controversy surrounding Terri Schiavo and the lawsuits that surrounded whether or not she actually wanted to be kept alive or not. (Regardless of where you fall on the controversy, the fact that it was a controversy is the tragic, avoidable part).

For that reason, I’m making my wishes known right here:

Personal Public Declaration

Of course, I wish to be treated to the best of modern medicine. As long as there is a reasonable expectation of recovery, it is my desire that all means are used to attempt to revive and rehabilitate me.

However, one of my greatest fears is that I will find myself in a situation similar to Terry Schiavo. That is, without question, my version of a living hell.

Anyone who knows me should also know that I do not want to be a burden on anyone. Society owes me nothing, I will not ask the taxpayers to step in on my behalf. I am neither a looter nor a moocher and this includes any burden placed upon my family as well. If there is no chance of recovery, with a reasonable degree of medical certainty that I will not regain consciousness, or that the only hope is to prolong a painful and humiliating existence for the sake of a minor, temporary reprieve of my inevitable death, I wish to be allowed to die in peace and with dignity.

These are my wishes. They may not be your wishes, but they are mine. I do not subscribe to the notion that any life is sacred and valuable simply because the autonomous nervous system is operational. I believe in quality of life. I believe in dignity in life. If I am but a mere shell consuming oxygen, then I do not consider that to be living.

If you do not agree with me, or even if you do agree with me, then write it down. Fill out your Living Will, Proxy, Advanced Health Care Directive, or whatever your State calls it. Do it now. Get witnesses. Make it known what you want.

The Rest of the Story

If you’re reading thus far, and wanted to know what has happened to my father up to this point, there is good news… for now.

My father remained on a decline until about Wednesday of this past week (March 5), more than a full week after the event. He was conscious for only a few minutes during the day up until that point. He continued to have additional tests, including Lumbar Punctures (commonly known as a Spinal Tap), MRIs, EEGs, CT scans, etc. Yes, those are plural for a reason.

Each of the tests came back with either negative results, or contradictory results. For the sake of his privacy, I’m going to leave the specifics vague, but even now there does not seem to be any actual diagnosis of what caused the event. The evidence is simply too contradictory and elusive.

Nevertheless, he began to improve rapidly beginning on Wednesday. He was able to have visitors and began to feel more and more energetic. He began to request to get some exercise (normally he’s a very active person), and was able to participate in more of the medical discussions (which, honestly, were more of him explaining what the terms meant to me and my mother).

In fact, his improvement appeared to stun his doctors as well. It was becoming difficult to determine what to do next – they had come to the logical exhaustion of the non-invasive tests, but didn’t want to begin doing invasive procedures when he was improving so rapidly.

The final test was on Friday morning – a PET scan. A PET scan is similar to a CT (or CAT) scan, but a bit more sensitive. If the PET scan came back negative, it meant that we would be back to square one, with no clue of what was going on. If, however, the PET scan came back positive, it would mean that my father had developed some form of cancer. Damned if you do, damned if you don’t.

The PET scan came back negative.

We are still waiting for several of the results of tests that were taken during the week – tests that can take up to 3-4 weeks to complete. As he was improving so rapidly, however, the doctors decided to release him from the hospital and treat him as an outpatient, at least until and if he begins to decline in health once more.

There is a huge sword of Damocles hanging over our heads at the moment. He’s better, ambulatory, and active. We know however, that there is considerable activity going on under the surface (quite literally, in fact) that we don’t understand, can’t predict, and have no idea how to stop – much less prevent another event.

At the moment I am returning to California (I’m on a plane even as I type this), mostly because my parents felt that they needed to spend some time together, alone, after this. I have other relatives who live closer to them, who will be able to stay for more flexible periods of time.

There are follow-up appointments already set, and test results yet to return. Until then, he only thing I can do is try to be prepared for when they need me again.

Please…

As I mentioned above, I don’t normally like to talk about personal things in public like this. This was, after all, a huge departure for me and an extremely uncomfortable exercise.

However, if I can get even one person to do this, to be just a bit more prepared than they were before reading this, I will consider this to have been the right thing to do. If you do happen to complete this, please feel free to leave a comment below. Perhaps you, too, can motivate someone to prepare for the un-preparable.

The Forms

This website separates out all of the living will/advance care directives, broken down by state. Please, I beg of you, do this now and do not wait one more day.

  1. Steven J. Schuchart Jr.
    March 10, 2014 at 11:31 am

    My wife and I did this after my own illness in May last year. It is sound and strong advice, please follow it. Do it now, not later. Age and health do not matter, these things strike us all without warning.

  2. March 10, 2014 at 1:57 pm

    Thanks for the public service you are doing by sharing your story. I would like to offer an additional thought.

    Unfortunately, I just went through something similar with my father over the last few months. I learned the hard way that while the advanced healthcare directive language is fairly simple, in reality, there is quite a bit of gray to the interpretation when it comes to making healthcare choices for someone. My advice is to have the have a conversation with your agent, as uncomfortable as it might be, and help them understand the intentions and wishes behind the words captured on the AHD so they can accurately represent them and so they don’t have to wrestle with any doubts about the decisions they are making.

    O

    • March 10, 2014 at 2:05 pm

      Thanks for the additional caveats, Omar. That’s extremely valuable; anything that can be done to prevent additional emotional shock is useful.

  3. Elvira
    March 12, 2014 at 2:47 pm

    Thank you,J, for writing and sharing this. Although I thought about it I have not yet started looking for information on this topic. So thank you!

  4. Jon
    March 26, 2014 at 7:26 am

    I’m simply stunned and speechless but glad that your father has pulled through for now.

    Your points about end of life planning are right on the money. Beyond the living will/health care proxy, I would urge everyone to also look at creating a living trust, a power of attorney, and making sure their beneficiary and POD (payable on death) documents are updated on accounts. The process of dealing with tough decisions doesn’t stop with just the health care. When the inevitable happens (which may be death or even just moving to a nursing home), then the estate has to be taken care of. The more things are planned and setup ahead of time, the less intervention the state will have during that difficult time and the less draining it will be on the family. A living revocable trust or power of attorney, depending on the circumstance, can make things easier for everyone.

    I write the above in the hopes that everyone will think far in advance about their end of life plans. We never know when that sword falls. I am extremely grateful that in your situation, it has not fallen and the time you spend with your father will now probably carry an extra special meaning and deepness. My best wishes.

    • March 27, 2014 at 3:11 pm

      Thank you very much for your kind words, and expressing the need so clearly. I really appreciate it.

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