Imagine the unimaginable . . .
I'd like for you to use your imaginations for a minute . . . let's say someone you love has been critically injured. You arrive at our Emergency Center, and you learn that your loved one is in a coma. The doctors tell you there's little chance of recovery but your loved one could live a long time -- maybe years -- if placed on a feeding tube. Otherwise, (she/he) will die in a few days. And the doctor looks at you and says, "Do you want us to put in a feeding tube?" What would your answer be? Or, let's say your Mother has Alzheimer's, and you've watched her slowly deteriorate; most days she doesn't know who you are. Today, you've learned she has a severe form of lung cancer, and she'll eventually die. The doctors say they can extend her life with chemo and radiation therapy, but cannot predict for how long. They ask, "Do you want us to do this?" Again, what would your answer be? Would you know if she would want that kind of care or not?
Technology . . . Extends life but causes new dilemmas
Not many years ago, when people were very ill, medicine couldn't do much to keep them alive. But in 1975, when the Quinlans began their ten-year quest to have their daughter, Karen Ann, removed from a respirator and be allowed to die, the American public woke up to a new reality: that death was no longer a simple thing. Today, we have the technology to extend life, but it has left us with some complex moral and ethical dilemmas -- and a shared sense of fear.
Americans are not dying well
- 75% die in an institution
- Often placed on feeding tubes or ventilators regardless of their wishes
- Many die in pain
- 30% use most or all of their savings to pay for their health care at the end of life
Many recent studies have proven what we've suspected for a long time: that people in this country are not dying well. Today, in fact, 75% of Americans die in an institution of some sort. And for more than half of these, some type of technology had to be withdrawn to allow the person to die. Some are placed on feeding tubes or ventilation machines regardless of their wishes to the contrary. Many die in pain. Even our finances are not immune, and many families are faced with having to use their life's savings to cover uninsured medical expenses.
So, we see that although medical technology has helped us live longer and more productively, the other side of the coin can be a painful, prolonged death. And sadly, it also means that many of us will face the prospect of how to live with a serious illness before we reach that point. It's here, in these "gray" areas, that many of the medical dilemmas, and tough family decisions arise. We see these situations played out every day at Redmond Regional Medical Center. So often people think all they'll have to decide is whether or not to pull the plug. More frequently, the question will be, "should we put it in to begin with?" "Should we do this or that treatment?" "How far should we go?" The families who aren't prepared to make these decisions are often torn apart.
People clearly want more control over how they die. Many say they don't want heroic measures taken to extend their lives, yet most don't know how to make these wishes known. And when they do, family - and at times, even health professionals -- may be reluctant to follow them. And as important as we know planning is, health professionals may have an especially hard time bringing up the subject with patients in a way that does not arouse suspicion. We've been concerned with these trends at Redmond Regional Medical Center, and recently we became aware of a national study conducted by Georgia Health Decisions, a respected non-profit organization whose goal is to understand the public voice on health care issues like these.
The Quest to Die With Dignity
- Fear reaching the end of life of "hooked-up" to machines and would prefer a more natural death
- Do not believe the current health care system supports their ideal concept of dying
- Say family consideration is their primary concern in making end-of-life decisions
- Think it is important to plan for death and dying, but resist talking and taking action
- Believe the current planning options do not support the way they want to manage the dying experience
In the study, The Quest to Die with Dignity, Georgia Health Decisions found that many people fear the process of dying more than death, itself. Technology has robbed us of our ability to die with dignity, and we want, instead, to die in more familiar surroundings supported by our loved ones, and not isolated in an intensive care room hooked up to machines. We don't believe our current health care system supports the way we want to die - that there's so much focus on curing that we neglect the dying process and ignore the wishes of those going through it. Many things like insurance coverage, managed care, and lost relationships with physicians figure into this frustration. We're concerned about how our families will be affected, emotionally and financially, and this is the biggest factor in making decisions about our care at the end of life, and also the main motivation for completing an advance directive - to relieve our families of financial burden and guilt. Yet the process for completing and using an advance directive is a problem. We hesitate to put our wishes in writing because we think the system might give up on us too quickly. And the documents themselves are confusing and legalistic; we think we need a lawyer to fill one out, and therefore, it must be expensive, and so, we do nothing.
Reasons We Don't Plan for Final Health Care
- It's sad, depressing
- It's uncomfortable
- It reminds me I'm mortal
- I'm afraid of the unknown
- I don't want to burden my loved ones
- Dying is off in the future
- Talking about it might make it happen!
Basically, we don't want to talk about it, and we have a whole list of excuses to choose from. (Read above list aloud) . . . and finally, I've already told my - you fill in the blank - that I don't want my life to be prolonged by being hooked up, and that should take care of it. Does one of these ring true for you? Well, if it does, you're not alone. That's the bad news.
But now, there's good news.
Those of us at Redmond Regional Medical Center believe that change can, indeed, be made. That health professionals, and you - the consumers of these services - can work hand-in-hand to make things better. That's why we've joined with Georgia Health Decisions to do something about it here in Rome and Floyd County by sponsoring CRITICAL Conditions - a groundbreaking new project to help you and your families discuss and plan in advance for health care at the end of life - and to help your doctors and health professionals better understand and honor your decisions. The key to the program centers on the CRITICAL Conditions Planning Guide - a 3-step discussion tool to help people talk about their health care choices with family members. The first step is the Conversation Starter that takes people through some real-life situations to help them get over the hump and begin talking. These scenarios use a George-and-Martha type story to describe situations people often have to face. They offer some helpful definitions, then ask questions to get people talking. And they cover a variety of complex topics. People often think the only decision they will have to make is, "Should we pull the plug?" Unfortunately, a great many decisions must be made leading up to that question, and families will be called on to make them, whether they're prepared or not! These scenarios are real eye-openers in terms of describing these types of situations and the decisions that families may be called on to make.
Next, the Planning Guide has a personal worksheet that people can fill out individually, where they can elaborate on some of the topics they've just discussed. And finally, there's a Directive For Final Health Care - a new legal advance directive document that combines the former Living Will and the Durable Power of Attorney for Health Care in more understandable, "user-friendly" language.
The Planning Guide is a tested and proven tool in helping people overcome the barriers to talking about this difficult subject - to literally help them sit down at the kitchen table together and begin talking about their wishes before an end-of-life crisis occurs.
It's a gift . . . peace of mind!
But most important, our goal is to help you talk with your own family about your choices for final health care - before a crisis occurs. We all hope we have many healthy years ahead of us, but an emergency could happen tomorrow. Suppose it happens to your loved one. If it does, would you really know what to do? I encourage you today to obtain a CRITICAL Conditions Planning Guide and make an appointment with your family to sit down and talk. If you do that, you'll be giving them a gift -- peace of mind - and a life-long sense of assurance that they made the right choice for you when you could not make it for yourself.