End of Life Counseling vs. "Death Panels"

"...there are no 'death panels' in the Democratic healthcare bills, and to say that there are is to debase the debate." -- Charles Krauthammer

Thank you, Mr. Krauthammer, for bringing a bit of sanity to this discussion from the conservative point of view. As has been pointed out, this part of the health care reform bill only included incentives that had previously been non-controversial and which had bipartisan support -- before people started looking for any shred of evidence to back up their assertion that the purpose of healthcare reform was to pull the plug on Granny.

Krauthammer goes on to say, however, that living wills are of no value (though he has one himself), that ill people will change their minds anyway when the time comes, that family members will just ignore the living wills and use their own judgment, and that just bringing up the topic pressures patients to choose to forgo care.

It's true that a lot of people think there should be only one "right" answer to the question of using heroic measures to keep a terminally ill or vegetative person alive. But that's exactly why such documents are useful. If you happen to want to be kept alive at all costs, it's a good idea to put it on paper rather than assume that if the situation arises, people will know that's how you feel.

In fact, there are a lot of misconceptions about the whole topic. With the limitations on Medicare funding, nobody would be offering to hand out extra money to doctors unless they felt the need were very strong.

Counseling about advanced directives should start with young adults. After all, anyone could end up in a coma from a car accident, pregnancy complication, or other sudden event. It may even just be a temporary situation where decisions must be made about emergency procedures. But someone will have to make those decisions, and in those situations, it's especially hard on loved ones to bear that responsibility without any guidance or confirmation of their authority to do so.

Leaving the discussion until people are diagnosed with terminal illnesses certainly would imply that patients are really just expected to gracefully give up on life support. And often, the first time the issue is raised is at the time of a terminal diagnosis. That's why an incentive to move the discussion out of the oncologist's office and into the primary care doctor's office is an excellent idea.

The most important thing you can include in your advanced directive is the choice of a person to make decisions for you. No piece of paper can ever anticipate all the possible situations that could occur that might require slightly different decisions. Usually, the most appropriate decisions will first try to bring the person through what may be a reversible process, then -- when it becomes apparent that medical science can't make him better but can make him worse -- to change the focus to measures that make sure the person is not in physical or emotional discomfort. We can't always cure people, but that doesn't mean physicians no longer have any treatment to offer at that point.

While hospital personnel will informally use the legal next of kin as a spokesperson if there is no one designated, legally, they have no grounds to do this. The courts consistently rule that such a person should be appointed by the courts, not the doctors. Should there be any disagreement about the decisions being made for you, especially among family members who may be equally closely related to you, it can end up as a nasty court battle. That can exhaust your family's financial resources (that are needed to care for YOU) and can permanently destroy the bonds among family members (who would otherwise be cooperating to help care for YOU). If you have designated one surrogate decision maker (as well as a backup person), if you have informed your family members of your choice, and if you have discussed your preferences with your surrogates, it takes a lot of the pressure off them and everyone else.

What's more, you may happen to know that your legal next of kin does not see eye to eye with you on these matters. You may know he/she may be prone to faint in hospitals. You may have different religious beliefs than your family members. You may have a friend or life partner your family doesn't get along with but who you want to be with you if you are ill. You make even decide the best choice of surrogate should be someone outside the family. The best time to make these decisions is when you're feeling well and still have plenty of time ahead of you. Once you've created your advanced directive, you will continue to communicate your feelings and opinions with your surrogates and other family members. You may even re-do the document as you get older or in response to other people's experiences. That's why the law paid for periodic discussions of end of life issues rather than pressuring people to sign their lives away on some document, as if it might be used to override their own wishes later.

Most people don't think about end of life issues unless they are nudged. That's why the incentives to have doctors do some nudging could help.

Now what about the objection (such as was raised by Betsy McCaughey on The Daily Show) that having the law have a very specific list of topics that should be discussed would be a financial incentive for doctors to get people to agree to forgo care? Well, let's be realistic here, folks. If the law offers to pay people without specifying what has to be included, especially for a topic many of us are uncomfortable talking about in the first place, you're going to have doctors handing out brochures and calling it a discussion, just as you currently have pharmacists asking you to sign a log form and calling it counseling. If anyone objects to particular items in the list, sure, let's discuss that, but do Republicans really want to say that patients should be kept ignorant about any of those items?

There is also the idea that people will be pushed to have living wills in hopes it will be a big money saver for Medicare. And I'm sure there are people outside of medicine who feel that way. After all, there are statistics that 50% of Medicare expenditures are during the last year of a person's life. But the reality is that it usually isn't anything as clear cut as a comatose person being kept alive on a ventilator for months.

The more common situation is something like this: A person who has been holding up well with a chronic illness or who is advancing in age gets hospitalized with a urinary tract infection. That's not hard to treat, and she comes home from the hospital within a few days. But a month or so later she's got pneumonia. Again, it's easy to treat, but maybe she's not functioning as well as she was when she comes home. Maybe she falls and breaks a hip, and it's back to the hospital for a hip replacement, then to rehab. But while she's at rehab she gets confused at night from all the room changes in strange environments, so it's back to the hospital for a cat scan to make sure she didn't get a bleed in her brain from the blood thinner she's getting. Maybe she goes back to rehab after getting some tests for her delerium, or maybe she goes back home. She's getting nursing visits, multiple medications for her usual illnesses plus a few extra to tie up loose ends from the hospitalization. There are follow up visits with the primary care doctor, the orthopedist, the neurologist, and whoever else. Little things continue to come up. And eventually some event occurs that causes death, maybe in a hospitalization for something that doesn't respond to treatment so well, or perhaps the person will simply be found to have died in her sleep at home.

You see it often: Death doesn't always come because of some untreatable illness. Even people with cancer don't necessarily die of the cancer itself. People really do die of old age, and people naturally approaching death just become more susceptible to all kinds of simple illnesses, all of which require money to treat. But you're only going to see that in retrospect. A living will wouldn't change what you're doing or save that much money. None of these hospitalizations would be considered aggressive life support, because you aren't going to know it's the last year of someone's life until they do die.

You have an advanced directive because it makes an inevitable part of life more civilized for you and for the people you love. It's a tool to serve your needs in whichever way you feel best suits you. It's a document to provide guidelines for your caregivers to encourage them to respect your wishes, not a contract to bind you to youthful ideas you might abandon when you're closer to death.

If after hearing all this information, you want to complete an advanced directive form for yourself, there are sample forms at http://www.caringinfo.org/stateaddownload for each state. Your own advanced directive may be more personal, but these forms will help guide you through your own state's legal requirements. Take it to your doctor to learn about what all the terms mean. (I can't tell you how many people don't want to be kept alive on a ventilator but don't realize that being put on a ventilator is usually part of getting CPR.) Then talk to your family and chosen surrogate decision makers. The piece of paper is to make things easier on you and your family, but it's only the beginning of the discussion.