Category: Dying Wisely and Well

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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!

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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!

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Holidays and the Meaning of Life

Just got a holiday card from a dear friend. He sent me a hilarious collection of HOLIDAY EATING TIPS. There were 10 in all. Here is a sampling:

holiday-eating

1. Avoid carrot sticks. Anyone who puts carrots on a holiday buffet table knows nothing of the Holiday spirit. In fact, if you see carrots,leave immediately.. Go next door, where they’re serving rum balls.

and

9. Did someone mention fruitcake? Granted, it’s loaded with the mandatory celebratory calories, but avoid it at all cost. I mean, have some standards.

but the kicker comes at the end…

“Life should NOT be a journey to the grave with the intention of arriving safely

in an attractive and well preserved body,

but rather to skid in sideways, chocolate in one hand, and wine in the other,

body thoroughly used up, totally worn out and screaming,

“WOO HOO what a ride!”

 

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Cost of Dying: One nurse’s end-of-life choice was surprisingly simple — and liberating

by Lisa M. Krieger

In her last two months, Gayla Caliva stargazed and savored Jamaican food. She enjoyed picnics and her book club, trips to the zoo, the aquarium and the beach.

Her bucket list overflowed with forbidden foods. “And why shouldn’t it?” she reasoned.

She canceled her mammogram. “Teeth cleaning? Let it go!” she said.

How will you respond, when death calls your name?

Caliva chose comfort care over combat, rejecting life-prolonging dialysis for a life-affirming ending.

As a retired nurse, the free-spirited San Jose woman had seen plenty of bad deaths, and knew her failing kidneys would assure a more gentle demise, providing her the gift of time to say goodbye. How much time? Nobody could say.

But at 70, with no prospect of a cure, and influenced by her mother’s six-year dependence on dialysis, she foresaw only exhaustion when doctors gave her a choice in July.

“I didn’t have to think about it, because I already knew,” she said. “I didn’t want dialysis. Now I think, well now, I’ve signed my death sentence or something. I thought it would be scary. I can’t believe how unperturbed I was, how easy that came.”

She vowed to enjoy the dwindling days, savoring moments with her best friend and fellow nurse, Ann Raynor, and daughter, Diane Caliva.

The clarity of her decision also gave her loved ones the ability to celebrate her final days, more than suffer her death.

“It made you almost shift into those same gears,” Diane Caliva said. “It was like, OK, I’m just going to go with her on this, because she’s embraced it.”

Her mother’s one call for help was to Pathways Hospice, based in Sunnyvale. Like Caliva, 1.1 million Americans a year choose hospice care, in which nurses monitor patients and provide pain medication to ease them through life’s final journey, often at home.

Others come to a different conclusion, seeking treatments to prolong life that can buy precious time: a family graduation or wedding, perhaps.

The hard part is getting the information to make the right choice. A recent national study, published in the Oct. 25 New England Journal of Medicine, found that patients often fail to understand the limitations of treatment. Chasing miracles can delay the transition to comfort care, the journal concluded.

Gayla’s end in September was not, as she once dreamed, a romantic scene of winter sun streaming through the window, listening to the love duet from Puccini’s “Madame Butterfly.”

She slept a lot. She had trouble breathing, and there was confusion, with some agitation and pain. But her discomfort was brief and controlled. She was home, not hospitalized.

She died, like she lived, on her own terms.

“Live like a washrag? Weak as a kitten? All your food tastes like crap? That’s not a quality life,” she said. “I didn’t want that. Nope, not for me.”

Complete Article HERE!

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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!

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Embracing Death for Ourselves and Our Patients

I have the honor of having an essay of mine published on NurseTogether today.

“I want to celebrate my belief that living well and dying well are one and the same thing. I’m not talking about adjusting deathbed pillows so that the dying people can strike heroic poses for the edification of onlookers. I’m talking about achieving a good death in the context of real dying – with all its unpredictability, disfigurement, pain, and sorrow.”

My name is Richard. I’m the founder of PARADIGM/Enhancing Life Near Death, a nonprofit organization with an outreach to terminally ill, seriously ill, elder, and dying people. I’m also the author of the newly published The Amateur’s Guide To Death And Dying. I’ve been invited to share some thoughts with you about my personal journey on patient deaths.

Although I’ve been working in this field for 30 years, I should probably say from the onset that witnessing patient deaths is not something I chose to do. It was more like this work chose me. Let me explain.

I finished my doctorate in San Francisco in 1981. That same year a mysterious thing began to happen. Gay men all across the country began to sicken and die from an unknown disease. Was this a diabolic plot of some kind? Perhaps it was divine retribution. Or was this simply a very serious medical emergency? The AIDS crisis had begun in earnest.

Because of my background in religion and psychology, friends turned to me for guidance, but I’m afraid that I had nothing to offer them. Nothing, in all my years of schooling, had prepared me for what was happening to the people I loved. I was petrified. All my greatest fears were being realized. What did it all mean? It was a desperate time and I was powerless. I could do nothing but sit and watch the nightmare unfold.

As it turned out, sitting and watching was the best thing I could have done, because as fate would have it, this time I was to be the student, not the teacher. In time, I became less anxious. The monstrous thing I feared for so long was being transformed. I was able to sit with death and not be afraid. Death was no longer the enemy, she had become what St. Francis called her, ‘sister death.’

Years of going from one death scene to another with hardly a break in between was exhausting but also rewarding. I began to see patterns develop. Despite the uniqueness of each death, I noticed there were two things all these deaths had in common. They were difficult and lonely affairs.

Difficult because in this culture we have a hard time recognizing when things are over, especially the things we enjoy – summer vacation, relationships, our youth and even life itself. This is a problem because being unable to acknowledge the end of something makes saying goodbye and thank you impossible.

And they were also lonely affairs, because the wisdom people come as they approached the end of their life often died with them. There simply wasn’t a medium for collecting this abundant wisdom and thus it was frequently lost.

Most people face their mortality in a vacuum of information and support. It is as if each of will have to learn to die from scratch, as if no one had died before us.

I figured there had to be a better way to deal with this fundamental fact of life. That’s why I’m here. I want to take a fresh look at my mortality, and do so in an interactive and positive way.

I look forward to other opportunities to address the topic of patient deaths and even dying as a personal issue in the weeks to come. Thank you for this opportunity to join you.

Complete Article HERE!