Congress is debating the merits of the Affordable Care Act, and the usual suspects are leading the charge against it. They've already scored one victory. A few weeks ago, the news broke that the Obama administration was prepared to move ahead with the "end-of-life planning" provision of the Affordable Care Act, both of which have been the target of so much misinformation. Shortly thereafter, it was announced that end-of-life planning would not be authorized after all. It seems that this humane practice has fallen victim to yet another slanderous salvo. How did this happen?
First of all, it's vital that people understand exactly what end-of-life planning is, and what it is not. In an effort that would undermine badly needed health care reform in this country, demagogues like Sarah Palin created a fantasy called "death panels" and insinuated that health care reform would result in some government agency deciding when to "pull the plug" on terminally ill Americans. This tactic, outrageous as it was, did succeed, in that it scared many people and turned them against health care reform. It also reveals, however, how little many people understand about our health care system as well as how impotent they feel in the face of it. No populace that felt empowered about their health care system could possibly be stampeded in this way.
So what is end-of-life planning? It is, for one thing, not a death panel. On the contrary, the health care system that has existed in America prior to health care reform could be said to have been dominated by the equivalent of "death panels." They take the form of millions of denials, exclusions and outrageous premium increases that Americans with serious or terminal illnesses have received each and every year when they turned to their health insurers expecting help. I know of no one who does not know someone who has been the victim of such practices. In fact, in a survey just released by the Department of Health and Human Services, as many as half of Americans under the age of 65 have medical conditions that qualify them to either be denied coverage or else subjected to prohibitively high premiums. Naturally, the insurance industry insists that this number is inflated. But what if it is only a third of Americans? No matter what the percentages, do these practices not amount to de facto death panels? After all, where is one to turn if you are diagnosed with a terminal illness and then denied coverage or asked to pay a premium you can't possibly afford?
What end-of-life planning is, in the context of the Affordable Care Act, is for a patient with a terminal diagnosis to be able to meet with his or her primary care physician once a year to review the overall treatment program, consider various options and make rational decisions. There is no reason why close family members cannot be part of this process.
Not every man or woman who is facing impending death is open to end-of-life planning. Many individuals have shared with us their frustration in this regard -- often with unfortunate results. As an example, consider the woman whose father, suffering from severe dementia as well as kidney failure requiring dialysis, underwent cardiac bypass surgery. He died a week later from an infection of unknown origin. Why did this happen? Because, the daughter explained, her father had stubbornly refused to discuss such end-of-life decisions. "He didn't even know who I was," this woman said, "but I said yes to the surgery because the doctors wanted to do it and I didn't know what he would want." Such reports only serve to underscore the fact that there are many decisions that the terminally ill are well advised to make (preferably in consultation with loved ones) while they are lucid and capable of making them. Too many people die every year in hospitals and intensive care units simply because they did not have an opportunity to consider alternatives such as hospice or home care combined with palliative care, as opposed to heroic interventions when the chances for improvement are nil. Resources for end-of-life planning can be found on www.NewGrief.com.
Contrast the above scenario with recent research which shows that making palliative care available to the terminally ill -- including pain management, along with regular opportunities to talk with counselors and doctors -- results in patients reporting less depression, improved energy levels and a better quality of life in general. Hardly the image of a death panel.
Those of us who would prefer to offer the above alternative to Americans who are battling terminal illness need to stand up in any way we can in order to challenge misinformation and advocate for the humanity of end-of-life planning. We need to say it, loudly, clearly and often: The Affordable Care Act includes no death panels! There will be no death panels in America!
Follow Joseph Nowinski, Ph.D. on Twitter: www.twitter.com/NewGrief
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The best person to assist in a health care power of attorney is an attorney, and it should be done before the health problem gets serious. The individual should simply state the conditions under which they do not want extroardinary measures -- if they are in a persistent vegetative state, for example -- and specify that they want pain medication. Their agent should be a family member or friend who will make the tough call. The doctor can advise on the prognosis, but I do not think they should be involved in the power of attorney.
We need to make our wishes for care known so we receive the treatment we desire and our loved ones are spared the agony of making difficult choices without our guidance. Polls show that 90% of people say they want to die at home but only 20% do. It's important to make plans, such as a living will, a POLST (Physicians Orders for Life Sustaining Treatment), a DNR (Do Not Resuscitate) and to TALK with your family about your wishes.
The book LeaveLight at http://www.leavelight.com helps you make end-of-life plans in six simple steps. It may be difficult to make decisions while you are cogent and capable, but it's better than waiting for a crisis that catches you and your family unprepared financially and emotionally.
But death is imminent whether we like it or not....to everyone who has been concieved.
It is best to prepare for it. We are all born (concieved) to die.
I have told my kids, when I get to the point where I can't wipe my own ass, I'm ready to check out. Maybe that's selfish, because I realize that many folks with handicaps have this problem. All I can say is that they are a better person than me. I'm over 60 now, and anything can happen. I'm slowly working on putting my 'house' in order. I'm paying now on how I would like to be disposed of. Cremation is my choise. If the time comes and I have to be hooked up to a machine to live, that's what I call artificial breathing, not living. There is a difference. I don't want that for me. If I'm brain dead, I'm dead, let it be. If I'm terminal and any treatment would only prolong suffering, then what's the point. I'm not ready to call in my cards, but in a game of playing high cards and all I have in my hand are low cards......
We have been conditioned in this country to think that because we have the best doctors and hospital and procedures and equipment in the world, it can prolong our lives. Yeah right.
Work in the hospice field for 13 years. Most people don't consider end of life preparation until last weeks or months of their life. We must consider for are self and even are parents, what kind of care we want at end of life. It hits real hard when parents' children have to decide what kind care they want their parents to have, and also parents want to know what care their son or daughter want.
Just something to think about?
It could be very difficult for some, because letting go is hard. But mostly, it is our own selfishness, for whatever reason, that inhibits facing this issue. As my mother had indicated just weeks before her passing, she had lived 84+ years and when her time came, let her go. And so after one week in the hospital, she came home & 8 days later she was gone, but in the comfort of her own home & surrounded by many loving family members. My father is a bit more defiant, wishing not to be exposed to the insult of hospitalization. Our prayers are that he be granted the privilege of simply sleeping into eternity to join his beloved bride of 64 years, and his firstborn daughter. That said, we will try our utmost to respect his wishes.
People shouldn't wait till they are terminally ill to have this counseling.... some aspects of this type of planning should be done well ahead of time, similar to a living will.
Don't leave these kinds of difficult decisions to family members or friends.... it could end up tearing them apart! Case in point.... Terry Schiavo