End of Life

How I Want to Die

I'm 61 years old. I might have 20 or 30 years left, but I believe it's more like 5 or 10. Regardless, since any of us could die at any time, I believe that it's time for me to consider how I want to die. This is simply a practical matter for me, not a gruesome one. We should each have a living will, and we should be willing (and even eager) to discuss it. It is my choice to die a natural death, with dignity, but I have placed particular constraints on what I believe a natural death looks like. I believe that there are things we can do to promote dying in a healthy and sound way, and this kind of death looks much different to me than what many people choose. There are three aspects to my end-of-life strategy: spiritual, physical, and financial.

(Skip the background, and just tell me how you want to die.)

Spiritual

Why are we so intent upon prolonging our own death or the deaths of our loved ones alive? What's so bad about death anyway, especially for believers? Why do we want to try to deny death, which we cannot do? Do we really have the right to interfere when we are moving from this life into the very presence of God? Isn't it much worse to linger on this earth with neither dignity nor quality of life? Sometimes, prolonging death just means prolonging suffering, and this simply makes no sense to me. Dying is just a part of living. God gives us grace for living, and grace for dying.

We almost worship modern doctors, medicine, and technology, although they seldom really provide any healing. They are too often only good at keeping the terminally ill alive by treating the complications of underlying disease, unnecessarily prolonging the inevitable process of dying, and making it much more difficult than it should be. Why do we desperately want to cling to life, and hope for a medical miracle, especially when our experience shows us that there's simply no such miracle for old age? Instead, why don't we just learn how to discuss how we want to die our inevitable death. What's so bad about talking about end-of-life strategies? We just need to get over it. Is it worse than watching someone die an unnatural, prolonged, or painful death, especially when we know that's not what they want?

Physical

Too many times, we prevent people from dying a natural death. Instead, in the name of love and hope, we employ medical technology to try to save them, but it only prolongs their suffering. I firmly believe that this is a form of torture, unknowingly induced by one's loved ones. Usually, such patients are over 65 or 70 years old (and unconscious in the very last days), and they have been diagnosed with some form of an advanced illness, such as diseases of the heart, lungs, liver, kidneys, colon, pancreas, or thyroid. They are usually said to be suffering from "complications" of such diseases disease, and too often these "complications" arose from unnecessary surgeries and/or hospital-acquired infections. In truth, they were misdiagnosed, because their primary problem is simply old age (Psalm 90:10).

Hospitals

So, why do most people die in the hospital--the very place where we expect healing? Well, it's more efficient for doctors to manage seriously ill patients if they're in a hospital. They can quickly and easily just walk from room to room, continuing to recommend further testing when common sense tells us that there's really nothing that can be done. They just spend a few minutes in each room, exhibiting their ignorance, and collecting their fees.

According to a recent "60 Minutes" report, most doctors get paid based upon the number of patients they see; most hospitals get paid for the number of patients that they admit; and, 30% of hospital stays are probably unnecessary. Our primary care physicians could do much of the same things in their doctor's offices, but they think they can't afford to really spend enough time with a patient to see how they're really doing, adjust their medication, etc. They too have patients lined up in every room down the hall (and we're "impatient" if they make us wait because they spent too much time with their last patient). It's much easier for them, and much more lucrative, just to admit everyone to the hospital. Then, dozens of specialists can visit each patient, conducting even more (often unnecessary) tests.

Unfortunately, 20% of Americans die in the ICU. Not only is it expensive, but it's uncomfortable. Many such patients have to be sedated or have their hands restrained so that they don't reflexively pull out a tube. Today, this is normal, but I've visited enough ICUs to know that it's not the way I want to spend my last days on earth. Even if we're not in ICU, 75% of us die in hospitals or nursing homes. This just doesn't seem "natural" to me, and the older we are, the more tragic it is. I don't want to spend my last two months being hauled back and forth between the nursing home and the hospital.

My grandmother was 86 years old (and obese and immobile) when she became ill. She was transferred from a nursing home to a hospital. The flesh on her arms was so tender that the nurses actually tore her flesh loose by lifting her into the hospital bed. When they stuck tubes into her, they were so uncomfortable that she would pull them out. Good for her! She did die shortly after that. Our health care system was trying to decide how she would die, but she reclaimed that responsibility for herself, knowing that it belongs solely to each patient--not to doctors or our health care system.

Think about this: If you're 65 or over, and you go to the hospital, there's a fairly high probability that you will either die there, or come home far more sicklier than when you went in.

Doctors

Doctors are ignorant. This isn't always a bad thing--it's just the truth. We're all ignorant in many ways, and we all need to keep learning. I believe that the practice of medicine is just in its beginning stages. We've transitioned from "bleeding" patients to over-medicating them, often with medications that do more harm than good. Some day we will learn more effective ways of treating illness, and maybe even achieve "healing" once in a while. However, meanwhile, here's the ironic thing, and the epitome of what doctors don't seem to know: When we go to the hospital (even if we're just visitors), we're exposing ourselves to hospital-acquired problems, such as infections. There's a fairly good chance that a hospital visit will actually make the patient ill, often by acquiring infections there. Don't doctors take an oath to "First, do no harm?" Is this the same rationale that some doctors use to perform abortion?

Doctors treat what they can treat--not what we have. This reminds me of my own of my trips to doctors over the years. I go in because my back hurts--they treat me for high blood pressure, but my back still hurts. I go in because my hands are cold and painful when I use the computer, so I'm having to curb my computer time, and wear gloves when I do use the computer. After their battery of dozens of tests, they diagnose me with some "default" ailment, and recommend curbing my time on the computer, and wearing gloves. How helpful is that? It filled their pockets, but it did nothing for me.

I once developed an itchy rash, and visited the same doctor's office for it three times during a two week period. Each time, they would give me a prescription for some pills that did no good. Meanwhile, I was miserable for two weeks. I couldn't sleep, nothing helped, and I remember going out to the garage and lying in front of a high-powered fan, looking for any relief at all. Finally, on the third visit to the doctor, they said they didn't know what to do. They referred me to a dermatologist who diagnosed me with poison ivy, and gave me a steroid that helped immediately. Why didn't they do this on my first two visits. Although a skin rash doesn't sound very serious, I had not been too far away from suicidal thoughts, especially if doctors couldn't help me. Why couldn't they have just said, "I don't know" to begin with?

My mother became ill with a severe loss of energy and stamina when she was just 55 years old. The doctors performed just about every test they could before they decided to test her heart. After all of the various heart tests, and months after she had become so ill that she couldn't work, they finally diagnosed her with congestive heart failure. The results of all of their tests were that there was nothing they could do to help her. She simply needed a new heart and new lungs, but all of the surgeons said that she was too high-risk for surgery.

So, she came home with nothing but some pills that didn't help much, and a pile of bills. She actually felt worse than before simply due to fact of knowing that there was nothing that could be done for her. The closest thing to quality of life that she had was to try to plan out her slow death and her own funeral. Even that wasn't easy because she soon had to just lie in bed, on oxygen. My dad had to carry her to the bathroom. She lingered like that for years, before finally dying just after her 60th birthday. She too died in a hospital where she spent the last couple of weeks of her life. However, my dad took care of her at home until the very end.

Tests

Doctors (especially in hospitals) want to test us for any conceivable condition we might have, even if we will never have symptoms or need treatment for it. They think that they're practicing great medicine, but this really just further exhibits their ignorance. It's OK to be ignorant--we just have to know when we're ignorant. Although we think that we've learned a lot, we're just in the beginning stages of learning medicine. That's one reason why doctors recommend certain treatments for years, only to later reverse their decision on that treatment. We all have learned to lower our expectation of doctors. First we expect miracles; then, we hope for only healing; and, now, we just ask if we can't get some "help," in any form. They need to learn to say, "We probably can't help you."

On the "60 Minutes" special, there was an 85-year old woman in the hospital who was dying of liver and heart disease. Her 13 specialists conducted 25 tests. One of them even conducted a pap smear (for liver and heart disease?)--how ridiculous (but lucrative). Another one of her specialists sent to her bedside was a psychiatrist, because she seemed depressed. She told the psychiatrist, "Of course, I'm depressed. I'm dying." In truth, she was probably depressed because they wouldn't just let her die.

Not only are most tests unnecessary and not helpful, but I would argue that each test itself decreases one's quality of life to certain degrees. Not only can some tests cause harm, such as by exposure to radiation, but just having to take the test causes stress. Each time we agree to have a test that doctor suggests, here's the typical process:

 - Go to the internet to find a provider who will administer the test. 
 - Make multiple calls to that provider, for location, logistics, insurance, etc.
 - Call the insurance company to see what is covered, how much they will pay, pre-approvals, etc.
 - Schedule an appointment with the provider. 
 - Fill out a dozen sheets of paperwork for the provider (that he should already have access to).
 - Go back to the internet to get directions to the provider. 
 - Take time off work. 
 - Drive to the provider's office, through busy traffic and unfamiliar locations. 
 - Submit yourself to the test. 
 - Deal with any side-effects and complications. 
 - Pay for the test. 
 - Schedule another appointment with your regular doctor. 
 - Drive to your regular doctor's office, discuss how unproductive that test was, and schedule your next one; then pay for this useless doctor visit too. 
 - Spend the next few months calling various departments of the insurance company, the HSA or FSA administrator (for reimbursements), the provider, your employer, etc. 

So, at this point, the patient has experienced additional stress and discomfort, but he is probably no closer to determining the source of his problem, treating it, or feeling any better. Besides this, he has spent hours and hours in the process, including many hours on the phone listening to recorded voices, trying to select the right choices, and repeatedly saying "agent," "associate," or just "help;" talking to incompetent customer service representatives; and, dealing with all aspects of an unnecessarily complex health care system. These may sound like minor things, but they're not--they count up quickly, and they do matter. What does all of this stress do to one's blood pressure, heart rate, risk of stroke, etc.? Then, from a financial perspective, what did all of this cost (the patient or the taxpayer)--probably all to no avail? Furthermore, isn't our time worth something?

I spent a full year of my life being "treated" for severe depression. During that year, I had approximately 100 visits to various health care providers, including my primary care physician, psychiatrists, psychologists, and counselors, plus all of the tests that they suggested. It was basically a full-time job just having an average of two health care visits each week. That's no way to live. My quality of life was near zero, not only from my ailment, but in large part due to the process for my diagnosis and "treatment."

There is one final point to make about medical testing. There are basically no statistics available which would show how many tests are unnecessary. One reason for this is that even if a test provides no help in diagnosing or treating a problem, doctors always say that "at least it ruled out" something. Well, that's not good enough. It only reveals more ignorance. Furthermore, a test sometimes reveals a condition which is not related to the problem that the patient is complaining about. While doctors see this as a positive thing--catching something that could be a problem later, the patient (the one who is hurting) sees it as a negative thing--it's not helping now. Instead of trying to do something about something that the doctor thinks could be a problem later, let's take our problems one at a time, and in chronological order: My ailment is hurting me right now, and my doctor is showing his ignorance right now!

Financial

Unfortunately, because of the inflated costs of medical care, we cannot have a discussion of end-of-life strategies without talking about money. If you're running a hospital, you have to keep that hospital full of paying (preferably insured) patients, so that you can meet your payroll, make a profit, and pay off your bonds. If you're a doctor, you have to keep the patients coming back. (Why do anything in one visit that you can do in three?) Hey, I've got an idea: Why don't we pay these guys according to how helpful they are instead of by the visit or by the test? Maybe they could even keep a tip jar on the counter, like a bartender.

This is a problem for everyone--whether one has Medicare, other health insurance, or no insurance. 85% of our health care bills are paid by the government or by private insurers, not by the patients--ad most of this is paid by the taxpayer. If the patient is on Medicare or Medicaid, the taxpayer is paying for almost all of their medical care, regardless of whether or not they get better, any unnecessary tests that were run, or their ability to pay. We need to budget the amount of money that taxpayer dollars are spent on health care. If we don't, then it's likely that our country will go bankrupt, and this will be the single biggest cause of the bankruptcy.

Medicare

By definition, most of our essential health care is paid by the taxpayers; i.e., most of our health care dollars are spent on the elderly, and the elderly are on Medicare (even aside from Medicaid). Like most things, if the government provides a service, then we're likely to abuse that service. This is just due to our human (sinful) nature, so we need to have some reasonable constraints on the services provided (by the taxpayers).

In 2009, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients' lives. It has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked. This is a perfect example of the rising costs that I believe will eventually (soon) bankrupt our country.

By law, Medicare cannot reject any treatment based upon cost, as long as it's some hi-tech treatment that is thought to have some potential of extending life. Medicare pays $55,000 for patients with advanced breast cancer to receive certain chemotherapy drugs, even when it extends life only an average of a-month-and-a-half (and what is the quality of life during those extra 45 days?). For another example, Medicare pays $40,000 for a 93-year-old man with terminal cancer to get a surgically implanted defibrillator if he also has heart problems.

I recently had a conversation with some relatives who are on Medicare. One of them had just been to the doctor for a particular issue, and I was curious what treatment would cost. He said that he didn't have any idea because they never look at the bill--Medicare just pays for it. I said that this could be one reason for skyrocketing health costs. The man defended himself by saying, "The way I figure it, I paid for that."

In other words, he had already paid that bill by working hard all of his life, paying Social Security and Medicare taxes, so now the Medicare system owed him a lifetime of health care for free. Although I held my tongue, I wanted to say, "Well, you figured wrong." Maybe it's time we stopped holding our tongue on this issue. (I can, since I'm not running for office.) Would we rather offend the elderly, or watch as our country goes bankrupt? The truth is that this man (as well as the average octogenarian) has not paid for those Medicare benefits. Instead, his children and grandchildren are paying for them--including any imbedded fraud just because he won't even look at his bill. What kind of logic is this? If I'm entitled to it, why not abuse it?

Consider an average elderly man who was born in 1929, and who made average wages all of his life. He entered the workforce in about 1947 and worked for 45 years, retiring in 1991. Even if he made the maximum SS limit each year, he paid a total of $8,000 into Medicare during those years. In 2011, he's 82 years old, and in the 20 years that, Medicare has paid $300,000 of his medical bills, including heart bypass surgeries, ranging between $50,000 and $200,000 each, etc. (Re. Social Security, he paid a total of $37,000 into SS, and since he's been retired, he has received $300,000 in Social Security payments).

So, this man has paid $8,000 into Medicare, and he has received $300,000 back from Medicare--a 3,700% return. (Furthermore, he has paid $37,000 into Social Security, and he has received $300,000 back--an 800% return.) Yet, concerning his Medicare benefits, he says that he has paid for it? He has paid about 2% of it! His children and grandchildren have paid 98% of it, partly because he doesn't even bother to look at his own medical bills. We all know that Medicare fraud is widespread, along with innocent mistakes. This man won't even glance at his bill to see if his children and grandchildren are being financially abused?

We Are the Problem

We (patients and taxpayers) are a big part of the problem. We want the best care, with no restriction on the cost, especially when somebody else is paying for it. Some patients stay in ICU for weeks or months, at the cost of up to $10,000 per day. We seem to be willing to pay high prices for medical care, even when we know that we won't get much help, and that much of our money pays for fraud and abuse.

Here's one of the worst examples from the "60 Minutes" program: A 68-year-old man wanted a liver and kidney transplant, for $450,000 (of Medicare money). His doctors told him he was too weak for it. They asked him what should be done if he got worse and his heart or lungs failed. They noted that resuscitation rarely works on someone in his condition, and that it could lead to a drawn out death in the ICU. They asked him if they should do CPR if his heart was to suddenly stop, and he told them that they should. He said that he would rather be in the ICU again. Then he joked, "It beats second place."

This is so absurd, I'm not really sure how to respond. Does it really beat second place? To him, first place was lingering in ICU (probably unconscious), and second place was death. So, he was essentially saying that second place (lingering in ICU) beats first place (death, and entering the presence of God). It's just not rational. In my view, he had these two backwards. Our goal should not to be to extend this life, at all (of somebody else's) costs. This is "dying badly;" i.e., suffering, connected to machines, and leaving behind a mountain of financial debt when we do finally die. I believe that we should sign living wills (or whatever is necessary) expressing our wishes that no extraordinary measures be taken to keep us alive, lingering in the hospital. I also don't want dozens of specialist running their tests.

If we have Medicare, or other health insurance, we seem to no longer be cost-conscious consumers, which would help to keep prices down. Instead, we patients aren't the ones paying (most of) the bill, so we're only conscious of finding relief from our ailment, even if it means running tests that we could not otherwise afford. Since most health care is paid for by someone else, most patients don't even look at the bills. Do we act the same way when we're financing a new car? Instead, everyone wants all of the tests they can get, since they're (seemingly) free. What causes us to react like this? Why are we so reluctant to shop for the best deals, or even glance at the bills when they come?

Here's the deal: If a person is rich, he should have all the tests and operations that he wants, and pay for them himself. If he's not rich, but has health insurance, he should realize that the insurance company is paying much of his bill (and charging premiums accordingly), and he should treat the insurance company's money as though it were his own, so as to keep costs down. If he's poor, he should realize that the taxpayer (Medicaid, etc.) is paying his bill, so he shouldn't abuse his privileges.

Why don't we just make a rule that the taxpayer doesn't have to pay for putting defibrillators into 93-year-old men with terminal diseases? Maybe we (taxpayers) shouldn't pay for liver surgeries and multiple cardiac bypass surgeries on octogenarians. How much sense does that really make? We need to limit these expensive procedures which are paid by the taxpayer, based upon factors such as age, functional status, quality of life, the ability to make adequate benefit of the procedure, means testing, and common sense.

So, does this mean that we should "pull the plug" for some octogenarians? Yes. Does "limiting" mean "rationing?" Well, I would call it rational rationing. Call it what you want, but it's not only rational and logical, but it's cost-effective for the other guy that really needs it, and for the next generation of taxpayers. Besides, I don't want to be kept alive on machines if there is no reasonable hope of recovery.

My Plan for Dying

Although I am not afraid of dying, I do have some specific fears about the process of dying. My primary objective during this process would be to control my pain--not to prolong my life. Like most people, I would prefer to die at home, with pain management as required, and nursing/hospice assistance at home if necessary. If this isn't possible, then my next choice would be a hospice facility. (These facilities have been shown to be very cost efficient.) My next choice would be a nursing home, and my last choice would be a hospital.

Many dying patients that are treated aggressively when they would actually prefer less aggressive care if we would simply and honestly explain the options to them. They too would prefer to be cared for at home, or at a hospice facility, but they can't really make an informed choice.

Now, does my Plan for Dying work for everyone? Of course not. If I have a ten-year-old grandson who develops a serious medical condition, I would hope that his parents would carefully weigh all of the options, and do everything within reason to find a cure and heal their son. After all, this child has 70 years of life ahead of him. He's young, and whatever the doctors do for him will be that much more valuable for his life.

However, what if I develop a serious (perhaps the same) medical condition when I'm 65 years old or older? The answer is that we simply treat me less aggressively. We still do everything within reason, but the definition of "within reason" changes and matures with age. Now maybe we don't spend hundreds of thousands of dollars on tests to try to find the cause. Now maybe we don't spend a half-million dollars on multiple 12-hour surgeries to try to fix me so that I can live a couple more years. Now maybe we draw those lines differently. Now maybe we accept a diagnosis of old age, even it seems a bit premature. Maybe I aged faster than others. Maybe we just try to make me as comfortable as we can.

There is, however, a big problem with a plan like this. Who gets to decide whether or not I am within a couple of months of my own death; i.e., whether or not I'm terminally ill? If I get sick, who is to say that a trip to the hospital might make it better? The answer is, quite simply, "I do."

However, I'm not a doctor. What if there are doctors who believe that they might be able to improve my condition or my quality of life? Well, doctors have never proven much to me, so I'll just stick with my own control over my own life, if you please? Besides, surely most doctors know at least enough to tell that a patient is not likely to get well. BTW, there's a big difference in possibly "getting better" and getting well--either way, it's still my call.

What if I get cancer, and the doctors recommend chemotherapy, radiation, and all the side-effects (new sickness) to go along with them? What if I don't want to start intentionally killing cells in my own body--probably good ones along with bad ones? Again, it should be the patient who makes the decision, based upon age, possible benefits, side-effects, etc.

But what if I make a choice that proves to be wrong? What if I avoid the hospitals, then they make some new discover, but it's too late for me; if only I had gone to the hospital sooner. What if I increase my risk of death by deciding to stop taking a particular medication, perhaps due to its unpleasant side effects? The answer is still the same, right or wrong, "I do."

Here are some specific examples (from true life experiences that I have observed):

- If I'm in hospice care, and the doctors say that I have internal bleeding, and that I need to receive a pint of blood every week: No, just make sure I have adequate pain killers, and give it up.

- If I'm 75 years old, and my kidney function has decreased to 15%, I don't want to be put on dialysis three times a week. Just make me as comfortable as you can.

- If I'm 70 years old, and in poor health anyway, and the doctors remove a tumor and indicate that they "got it all." When they suggest chemo: No, if they got it all, then why do I need the chemo. If they didn't, what is the chemo going to do for my quality of life during the little time I have left.

- From this point on (56 years old), if I really need chemo, and the doctors want me to return regularly to be "scoped" for more tumors: No, what's the probability of more tumors? If new tumors do develop, this indicates to me that they're going to keep returning, and I'm going to die of cancer. Again, what is further treat (surgery, chemo, radiation, etc.) going to do for my quality of my limited remaining life.

It's important to note that this is not submission to an alternate form of suicide, or even quickening one's death. Doctors are never really sure of the benefits and side-effects of a particular medicine for a particular patient anyway, especially when combined with other medications. We're still letting God decide, using our best judgment--just not necessarily some doctor's judgment.

It's still my choice, so I'll gladly accept the responsibility. I've made many mistakes in my life. I'm sort of used to it. However, it's not only my choice and my responsibility, it's also my life.

Owen Weber 2017