How we can change end-of-life medicine

A gift Americans owe to themselves and their country in 2013 is lessons on how to die.

our-livesDoctors know this. They don’t spend their final hours like the other 2.4 million Americans who die every year. They’ve seen patients hooked up to tubes in hospital beds, suffering unnecessary pain and indignity, while tens of thousands of dollars are spent on every medical option to extend lives that are clearly near the end. According to a Johns Hopkins study, most doctors have advance care directives, reject CPR and live their final days with dignity, at home and in hospice, surrounded by loved ones.

The Mercury News’ Lisa M. Krieger has spent the past year grappling with our approach to death in America. Her insightful, heartfelt series, “Cost of Dying,” concludes Sunday with a practical analysis of how to change end-of-life medicine. She encourages us to take charge of our own deaths, tell doctors what we want, reject treatments that we really know can’t help and — this is most important — consider suffering, not death, the enemy. Expanding access to hospice care is a key to all this.

Pain can be managed very well today. Most Americans could die in peace at home. But nearly 80 percent die in hospitals or nursing homes, even though surveys show these are the last places the vast majority wants to be. About 20 percent die connected to tubes in intensive care units, the least humane and most expensive end of life care.

We need a culture change in our approach to death. We need to focus more on dying with dignity and less on extending life to the last possible minute. This will be better for individuals, and it will be better for America: Our health care costs are killing our economy, and pointless end-of-life care is a big part of the reason.

This country spends nearly twice as much per capita on health care as any of its competitors in world markets, but by most measures, it achieves poorer results than European counterparts. A major reason is that the 5 percent of Medicare patients who die every year consume almost one-third of all Medicare expenditures. And one-third of those costs are incurred in the final month of life, when there is no chance of a real recovery.

The number of Americans 65 and older will double in the next 20 years, putting more pressure on our medical system. People understandably worry that treatments that could benefit them may be less accessible, but the enormous amount of money paid to extend suffering at the end of life benefits no one.

Today 75 percent of Americans could die comfortably at home with hospice care. But we have to make that choice personally, talk frankly with doctors and family — and work to change family and community attitudes.

All we need is the will.

Complete Article HERE!

Let’s talk about dying

Lillian Rubin lives and works in San Francisco. She is an internationally known writer and lecturer, who has published twelve books over the last three decades. Last evening her latest essay appeared in Salon. It’s brilliant and a must read.  This courageous woman breaks open a discussion we are all literally dying to have. But so much in popular culture avoids and even prohibits this essential death talk. I commend Lillian for breaking this cultural taboo. Perhaps now others in the media will do likewise.

Lillian Rubin

Complete Article HERE!

End-of-life care, talks help folks die well

By Dr. Andrew Ordon

As doctors, we are taught that death is the enemy. We are here to stop it and if a patient dies, we have failed. That mentality has led to an alarming statistic. According to one study, 60 percent of your health care dollar is spent in the last 30 days of life. Wouldn’t those resources be better spent on prevention and defeating curable diseases earlier in life? Why do we try so hard at the very end? One reason is that we think we can defeat the disease and gift the patient with more time. But there are times when that is not a reality.

One obvious example is the terminally ill. People with Stage 4 cancer. That means they have a cancer which has spread from the local area to a distant location. Cancer starts out in one place, and if it is isolated there, it’s called Stage I. If it erupts from its local area but has not spread to lymph nodes it is Stage 2. If it has spread to nodes but has not spread beyond the region of origin, it is Stage 3. If it has traveled by lymph or through the blood stream to a distant organ, that’s Stage 4, which is as bad as it gets. This is when doctors tell you how long they think you have left.

In a study published in November in the Journal of Clinical Oncology, 1,231 patients with Stage 4 lung cancer were evaluated for their End of Life (EOL) experiences. They considered “aggressive” care to be things such as receiving chemotherapy in the last 14 days of life, ICU stays in the final 30 days and an acute-care hospital stay in their last 30 days.

Researchers found that patients who had EOL discussions before the final 30 days were more likely to receive appropriate hospice care than those who did not have EOL discussions.

The authors wrote: “Given the many arguments for less aggressive EOL care, earlier discussions have the potential to change the way EOL care is delivered for patients with advanced cancer and help to assure that care is consistent with patients’ preferences.”

I have overseen the hospice care of a relative and can tell you firsthand that it is far better than having no plan in place. Hospice nurses and doctors treat the family as much as the patient. But arranging for hospice care sounds a bit like giving up. It isn’t. It’s acceptance of the reality that we all make this journey. Hospice care is merciful and compassionate.

The time to discuss end-of-life care is before the end is near. It is possible to die well.

Complete Article HERE!

End of life options worthy of attention

By Joe Timmerman

Death is a very difficult topic to discuss. It’s not a subject that most people enjoy pondering. It is especially difficult to discuss with someone whose death may be imminent. Like many issues, it might be easier to just avoid the topic altogether. However, as is often the case, pretending the issue doesn’t exist won’t make it go away, and can often make the end result more difficult to deal with. Thus, the news the Madison medical community will start providing end-of-life planning as a standard patient service is welcome, indeed.

End-of-life planning involves sitting down and coming up with an “advanced directive.” An advanced directive is essentially a set of written instructions regarding a patient’s preferred medical care that are carried out in the event the patient is no longer able to make those decisions. For example, a patient might specify that, if they should enter into a vegetative state, they should be taken off the ventilator and allowed to die.

Preparations for death, such as end-of-life planning, are becoming increasingly accepted in the medical community. According to guidelines published by the American Society of Clinical Oncology, all terminally ill patients should sit down and discuss their end-of-life wishes with their family and health care team.

Advanced directives are beneficial for a variety of reasons. To begin with, people should have their health care administered according to their own preferences. If someone wishes to be kept alive on a ventilator, then he or she should be able to. If someone wishes instead not to be put on a ventilator, then they shouldn’t have to be put on one against their will. Just because someone can’t communicate his or her preference doesn’t mean it shouldn’t be honored. Either way, this is utility enhancing for the patient.

As for the health care provider and the patient’s family, they aren’t forced to make life-or-death for someone else. Making these decisions are, as one might expect, extremely taxing, and everyone is better off if the patient makes his or her own decision ahead of time rather than leaving it to a third party. In a powerful Time Magazine article, Joe Klein recounts his difficult experience making these decisions for his own parents. As he writes, “I spent the next five months as a death panel for both my mother and my father.” He later writes he was “extremely fortunate” to transfer his ailing parents to a health care provider that was much more willing to candidly discuss death.

Coming up with an advanced directive also helps to keep health care costs down. CBS News reports Medicare spent $50 billion in 2009 on doctors and hospitals over the last two months of patients’ lives. The kicker? “20 to 30 percent of these medical expenditures may have had no meaningful impact.”

Over the course of one year, Medicare alone spent as much as $15 billion of treatment had no positive effect on patients’ quality of life. This is a prime example of wasteful spending that, in today’s age of fashionable austerity, needs to be eliminated. A significant portion of this spending could be eliminated if people were only kept alive as long as they wished to be.

It might seem that doing anything less than everything to extend a person’s life would be unethical. However, if the person doesn’t want to be kept alive though extraordinary measures only to suffer for longer, their wish should be honored. This can only be accomplished through people having candid discussions with their families and doctors. The fact that local health care providers are starting to encourage these discussions is good news for all Madisonians.