We enter life with death as the certain outcome. That is a fact. Only the length of life is an uncertainty. The mission of care-givers—whether physicians, nurses, or other health professionals—is to improve the quality of that life. The conflict for the health professional occurs at that point when the inevitable approaches—the end of life. The physician commits to “first, do no harm.” At what point does prolonging life become counter to that commitment? Does that mean the physician must know when it is time to help the dying patient confront his or her mortality with dignity? Should it mean the best care-giving strategy is providing the patient with the best and most tolerable exit when “life-saving” efforts are futile?
It has been said that each of us will spend 80% of our total life’s health costs during the last 22 months of life. Reversing that thought would imply that unless we are less than two years from death’s door, we have yet to consume 20% of our total life health costs. Using simple mathematics you can get an estimate of what that cost might be. Start by totaling all your life’s health expenses to the present (make sure you include all the premiums you have paid on health insurance including your employers’ contributions). Then, divide by 0.2 to arrive at a number that would approximate something less than the cost of your health for your existence. Subtract the amount you have spent to determine approximately what you have yet to spend. My guess is that number would stagger you. What, if any, is the lifetime cap on your health insurance policy? Most have one. How close are you to reaching it, now? Now compare that with your total health care costs. Are your personal assets sufficient to cover the remaining costs? What would you have to sell to cover the remainder? Does it seem reasonable to consume the accumulated resources of a lifetime—not to mention potentially burdening children and grandchildren with that kind of debt—merely to prolong the inevitable? Might you, the patient, be better served with an alternate plan to provide comfort and care in a hospice setting or at home surrounded by family and friends?
Herein lies the rub. To deal with this issue, we must confront our mortality. We must accept that life is a terminal condition and that we are not getting out of it alive. The sooner we come to grips with that reality, the sooner we can begin to logically approach the management of healthcare cost.
In my many years of reporting on health care, I have encountered some interesting data and studies to illustrate this problem. Below is a recent example:
“When is enough, enough?”
Physician-researchers from the Virginia Commonwealth University Massey Cancer Center published a case study in the June 11, 2008 issue of the Journal of the American Medical Association exploring the role of chemotherapy given in the last phases of life to cancer patients in the United States. The authors, Thomas J. Smith, M.D., and Sarah E. Harrington, M.D., serve respectively as medical director and attending physician of the VCU Massey Cancer Center’s Thomas Palliative Care Program.
In the article, the authors show that chemotherapy is given near the end of life in the U.S. more than in other countries. They explore why and how medical professionals should consider administering less chemotherapy at the end of life. In addition, they provide information for patients to support their decision-making efforts.
About 15 percent to 20 percent of cancer patients nationwide with incurable cancers receive chemotherapy within 14 days of their death. At that stage, when the disease has progressed and patients are often failing, the chemotherapy has virtually no chance of helping according to the authors.
“As doctors we are taught to save lives, and much of our training and practice is geared toward that effort,” said Smith. “Patients and their families want and need more information to transition toward the best death possible. This article provides several helpful sections to identify the appropriate goals of chemotherapy, transition to palliative or hospice care, and discuss prognosis in clear and effective manners with patients.”
Taking several other factors into account, chemotherapy toward the end of life may not be the best solution for many incurable patients. For example, chemotherapy may have negative side effects, compromising the patients’ sense of well-being. People in hospice who do not receive chemotherapy live longer they said.
The authors said less chemotherapy would allow for better quality of life and easier transitions toward death for those whose illness is terminal. Chemotherapy prevents patients from going into hospice. In addition, one in three families is bankrupted by serious illness, and patients receiving chemotherapy are likely to miss opportunities for spiritual growth, quality family time, travel, financial transitions and to pass on a “life review” for future generations.
Smith and Harrington propose that medical professionals have honest communication from the beginning with patients, bring up hospice, and ask patients what they want to know, and then tell them.
Gambling with your health
Well and good, you might say, but won’t this require behavior modification? If this is not the current modus operandi, what is preventing this approach and how can we bring about change? My argument is that we must confront our own mortality at an early age. Why? As the study above illustrates, for most of us, the end-of-life is expensive and health insurance is our solution to that, that’s why.
Consider health insurance as a form of legalized gambling. You are betting (the insurance premium is the wager amount) that you will get sick enough to encounter costs higher than your monthly budget alone can afford and your insurers will have to pay. The insurers are betting you won’t. And you are happy when they win the bet! The insurance companies call it “peace of mind!”
Just as in other forms of gambling, the wager amount (“bet”) and “winnings” are determined based on the “odds” of you “winning” the bet. The more gamblers with which the insurer makes “bets,” the better the odds for the insurer to cover the losses from the “bad bets” of those who gambled and did not need to collect on their bets. The gamblers are referred to as the “risk pool.” Using this “gambling model” to understand a little bit of how health insurance works, will help you grasp the next point.
Obviously, the earlier you place your bet, the higher the likelihood that the insurer will be keeping your wagers (health insurance premiums – paid by you through payroll deductions, your employers as benefits which they treat as costs of doing business and pass along to the consumers of their products or services, and Medicare/Medicaid, which is also paid by you through payroll deductions) and not paying off for a long time. They cheer your healthfulness while collecting the monthly wagers and you are relieved you don’t have to make a claim on your bet. For the same reason that life insurance can be purchased cheaper when you are younger, health insurance premiums are cheaper when you are younger. Why? Because you are less likely to get seriously sick or die at age 20 than at age 45, they keep the bet.
Insurers hire actuaries whose sole task is to determine the “risk” of having to pay off on bad bets. Those actuaries help them determine how much the wager will need to be to help the insurer cover all the bets. They calculate how many will die at a young age, how many will contract rare and expensive diseases that are difficult to treat, how many will cancel their policies and move to another insurer—in which case, they get to keep all the collected premiums (wagers) without ever having to pay off a bet. All these factors and many others contribute to their decision as to how much to charge as a premium for providing certain benefits.
What if the “risk pool” were created at the same time you got your Social Security card? And what if your health insurance was available as a one-time decision that you carried with you for life? You decide on the coverage and benefits you want, essentially placing one bet, one time, rather than making a new bet every time you changed employers.
If you are like me, you probably got your Social Security card at about the same time you applied for your first job, since your employer needed it to properly report your income to the I.R.S. If at the same time, you make your end of life decisions (we will discuss these later in this article), you help the insurer to ascertain what their risk will be for your whole life. Because you are their beneficiary for life, they know there will come a time when you will collect on the bet—no more keeping wagers without paying off.
Their actuaries already have a pretty good idea of how much the average person will cost them in a lifetime. They also know when the catastrophic costs are most likely to occur. The larger the aggregated pool of beneficiaries and the wider the age distribution of those beneficiaries, the more evenly the insurer can distribute the payment of benefits through time. Thus, if the insurer could begin collecting your premiums (wagers) from that time when you are less likely to need health benefits and continue collecting them for a long time, then they would have money to invest and to grow, so that when the time comes when you do need to receive benefits (collect on your bet), they have more than enough to cover that bet.
However, if you start thinking about making those end of life decisions and acquiring health insurance at the time that you begin to experience the need for the coverage, the insurer knows that they will not have the opportunity to grow your money before they have to start paying it back. Their risk is already high and you are not a good bet, so you will pay dearly to make that bet. Consequently, they will demand staggering premiums right from the start. The earlier you enter the game, the less costly your premium (wager) will be for you and the less risky it will be for the insurer to be able to cover the bet.
As you can see, the gambling model provides a glimpse into health insurance which is simply one aspect of the health care delivery system, albeit an important one. Without the resources to pay for healthcare, there would be neither care provided nor any investment in improving the quality of healthcare.
Due to advancing technology, a decision made when you are young could need altering as you age. The “right” healthcare model would have to adequately deal with flexibility in the decision process to allow for these technological advancements without punishing the early decider.
Nonetheless, until we are willing to confront our mortality early and begin the end of life decision process, we are limiting the ability of healthcare delivery to meet our life needs.
Going out in style
I have observed the deaths of my grandparents, my in-laws and my mother. They were intimate revelations, and while each case was different, they were enlightening to my understanding of the end-of-life process. Throughout my life, I have often been a participant in “death with dignity” discussions. Having chronicled the evolution of treating end-stage renal disease (more recently referred to as chronic kidney disease) and the treatment of cancer patients in the community setting, the end-of-life discussions are integral to the cost of care debates. However, the death of a loved one brings that reality much closer to home.
It is my firm conviction that most individuals do not wish their exit to be the defining moment of their life, but rather prefer to depart quietly, almost unnoticed, much as their entrance was probably a largely unheralded event. Visions of medical tubing suspended from apparatus strategically placed all around their hospital bed and inserted into natural and unnatural orifices would scare the bejabbers out of most of us. I would be amazed to find that in the description of any who thoughtfully put into words how they would envision their exodus. Sadly, that is the picture too many witness on the day of a loved one’s departure.
I firmly believe that discussions of how one would want that exodus to occur need to begin much earlier in life. To accomplish that, we must confront the reality that life is terminal and that we are not bullet proof. The sense of invincibility that is youth, must be tempered with the reality that tomorrow is not guaranteed to anyone. Life is fragile, but, in my opinion, the human spirit is not. The earlier we make plans, and understand the terminal condition we have entered, the sooner we can begin to enter into end-of-life decision-making.
For each of us, there will be many varied and differing considerations to factor into the last days, weeks, months, even years of life. But the earlier we begin to create a vision of how in an ideal plan it would work, the more control we can exert over that outcome. If we procrastinate, we leave those decisions to others, many of whom will have no knowledge of what we want. Some might even lead to dividing families and bitter, acrimonious and costly litigation.
What are those end-of-life decisions? Some of them have already been referenced in the discussion above. At what point does your quality of life impact the life-saving efforts of health professionals. Who, besides yourself do you trust to make decisions for you when you are deemed incapable of making those decisions for your self? Whoever you designate should be intimately familiar with your personal exit strategy including a full understanding of the vision you have for your ideal exit plan. How well have you defined your plan to family members? Is the plan explicitly defined in a will or trust document? Is it binding on your heirs to the extent that legal action will result in stiff penalties to those who challenge it and their lawyers? These are some of the detailed discussions that you should have long before those twenty-two months referenced at the beginning of this article.
Until these issues have been completely—and I mean, completely—addressed as a society, not just individually, there is little hope that as a society, we will ever reign in the escalating costs of healthcare at the end of life.