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Posts with tag hospice

Hospice: An underutilized option

The New England Journal of Medicine features a Perspective article from Gail Gazelle M.D. this month, entitled Understanding Hospice: An Underutilized Option.

Despite increased use of hospice, many aspects of hospice care are misunderstood by patients and doctors. Contrary to popular belief, less than half of hospice patients have terminal cancer; the remainder are mostly end-stage cardiac disease. Also, many patients and doctors do not realize that hospice at home is often free, whether through Medicare or their insurers.

There are many studies cited in the article regarding the benefits of hospice care. Despite the many benefits, the median length of hospice care is only 26 days, with one-third of patients being referred only in the last week of life. One view that might contribute to this, according to the article, is the mistaken notion that patients must have a do-not-resuscitate order to enter hospice.

The most important factor causing delayed referrals, according to the article, is physician attitude. One paper from the American Society of Clinical Oncology is cited where many oncologists and doctors regard the death of patient as a failure and also do not want to destroy their patient's hope, and therefore delay hospice referral.

Fewer minorities use hospice

Terminally ill patients who are minorities are less likely to choose hospice care than whites, according to a recent report..

In 2005, 82 percent of those receiving hospice care were white, while 7.5 percent identified themselves as black or African-American according to the National Hospice and Palliative Care Organization. This compares to the nation as a whole, where 75 percent of the country is white and 12 percent is black, according to the Census.

African-Americans seek hospice care less often due to cost, health insurance factors and a sense that they are being denied medical care on the basis of race, according to experts. According to John Radulovic of the National Hospice and Palliative Care Organization, "Some people think that if a doctor wants them to stay home and not come into the hospital, that the medical system isn't truly concerned about them."

Some hospices are trying to reach more African-American through church programs, since African-Americans look to their faith communities for support during serious illness, according to Radulovic.

Other hospice groups are trying to reach out to minority Hispanic commminties by providing Spanish-language materials.

Tammy Faye won't let cancer get her down

On May 8, Tammy Faye Messner (formerly Bakker), announced that doctors had stopped treating her cancer, that her fate was in the hands of a higher power. Last night, I heard Tammy Faye's voice on television as she spoke to Entertainment Tonight reporters about the state of her health right now.

Tammy Faye's colon cancer, diagnosed in 1996, has spread to her lungs and is causing her severe pain. Her back hurts, she said, and her stomach hurts and she is having difficulty breathing. Still her message is loud and clear: she is not giving up.

When doctors told her there was nothing more they could do, Tammy Faye, 65, said she felt sorry for herself for about one minute. Then she reminded herself there is something out there bigger than doctors -- the Lord Jesus Christ. And so despite the fact that she has been in bed for most of the past year, has lost tremendous amounts of weight, and knows her days are limited, Tammy Faye is staying strong. She is truly living for the day.

If you'd like to send your wishes to Tammy Faye who is now in the loving hands of hospice, click here.

Congresswoman Millender-McDonald dies of cancer

California Democratic Rep. Juanita Millender-McDonald, subject of an April 20 post, died of cancer early Sunday. She was 68.

Millender-McDonald, in her seventh term as a congresswoman, died at her home after just recently asking for a four to six-week leave of absence from the House so she could deal with her condition. While details on her type of cancer have not been released, a spokesperson says she had been receiving hospice care.

"Juanita Millender-McDonald was a trailblazer, always advocating for the full participation of all Americans in the success and prosperity of our country," said House Speaker Nancy Pelosi. "The dignity with which she faced her illness was an indication of the determination with which she always served the people of her district."

Millender-McDonald, a native of Birmingham, Alabama who served a district including Compton, Long Beach, and parts of Los Angeles, is the second member of Congress to die this year of cancer. Republican Rep. Charles Norwood Jr. of Georgia died in February after his battle with both cancer and lung disease.

Governor Arnold Schwarzenegger has 14 days to set a date for a special election to fill Millender-McDonald's seat.

The congresswoman is survived by her husband, James McDonald, Jr., and five adult children.

The clouds parted, the rain fell

My friend's husband lost his mother to liver cancer during the wee hours of Sunday morning. He had traveled with his family from Ohio to Florida expecting to take his mom home with him so she could spend her last months where she once lived.

Steve never got to take his mom home. She died just days after he landed in Florida. Still, I am confident he won't return to Ohio empty-handed. His positive and healthy perspective on losing his mom will surely keep him company.

I got to see Steve and Kim -- my very best friend whose bouncy ringlets I envied long before I got my own post-chemotherapy curls -- on the same day Steve's mom died. They needed to get away and wanted a distraction for their two small children.

I am honored to have been chosen as my friends' destination -- not only so they could begin to heal from their loss, but because I gained a renewed sense of calm about death and dying during the time we talked and laughed and reminisced.

Steve's mom, 69, died at home in the loving arms of hospice caretakers who offered her round-the-clock care. During her final hours, she received a bath, a back rub, and a massage with body lotion. She sent non-verbal messages to her family members indicating she wished to be alone and once she had convinced everyone to head for bed, she took her final breaths. She died facing a wall, in contrast to her usual position in which she faced the door, as if to welcome all visitors. Her final resting pose was perhaps her way of saying good-bye. Steve sees it this way.

Just moments after Steve's mom was driven away in a funeral home car, Steve saw the clouds part. And then the rain fell. "Mom just figured out how to turn on the water," Steve said.

I don't think I'll ever forget this remark. Or the fact that the rain didn't last for very long on Sunday. The day Steve's mom died was gorgeous, glorious, and sunny.

There's so much more we talked about -- like the convertible Steve's mom drove and how he thought about placing her urn, her photo, and a scarf in the seat and taking his mom for one last spin before turning the car in -- and we passed the day in a celebratory manner. This, I think, is exactly what Steve's mom would have wanted.

End of life pain management with opioids

There is a general belief that opioid use to control pain around the time of death causes the patients to die sooner. "Hospice providers, families, and patients should not be afraid of opioid drugs because of the belief that their use to control pain shortens life" says, Dr. Russell K. Portenoy, of the Beth Israel Medical Center, New York.

Dr. Portenoy and his colleagues examined the relationship between opioid use and survival using data from the National Hospice Outcomes Project (NHOP).

After analysis of all the factors, opioid use accounted for very little in differences of times of death. He believes that opioid therapy by itself contributes very little to the time before death occurs in hospice programs.

"Opioid drugs," Portenoy concludes "can be used aggressively at the end of life to relieve pain and suffering, and this use should not be constrained by inappropriate fear of serious consequences like earlier death".

Rep. Charles Norwood dies from cancer, lung disease

United States Representative Charles Norwood, who left Washington last week to enter into the care of hospice, died yesterday at his home after battling cancer and lung disease. He was 65.

Norwood, whose passing prompted the House to observe a moment of silence Tuesday in his honor, suffered since 1998 from chronic lung disease and later metastatic cancer that spread from his lungs to his liver. Last week, he announced he would no longer accept treatment, that he would allow hospice to care for him for the remainder of his days.

A dentist from Augusta, Georgia, Norwood was the first Republican to represent northeastern Georgia since the Civil War. A conservative passionately opposed to government bureaucracy and adamantly supportive of patients' rights, he hoped to one day become Georgia's first Republican Governor.

Norwood's medical decline began when his lung condition -- idiopathic pulmonary fibrosis -- began restricting his ability to breathe and necessitated a lung transplant in 2004.

Known for zipping around the Capitol with a motorized cart and oxygen tank, Norwood developed cancer on his non-transplanted lung reportedly due to the immune suppression drugs he took after his transplant. And although his cancer was surgically removed and his health did improve, doctors learned this past November his cancer had spread.

The vacancy left by Norwood's death will not be filled immediately due to governmental process. In Georgia, within 10 days of the seat being vacated, the governor must request a special election to the secretary of state. And the election must be held no fewer than 30 days later.

Norwood is survived by his wife, Gloria; two sons, Charles and Carlton; and four grandchildren.

Congressman Norwood leaves Washington for hospice

United States Representative Charlie Norwood will soon depart Washington, for good. He will head straight home to Georgia where he will receive hospice care now that he has decided to decline all further treatment for lung cancer that has spread to his liver.

An air ambulance will fly Norwood, 65, home as early as Wednesday or Thursday. The congressman, who had been traveling the halls of Congress in an eclectic cart, with oxygen tank in tow has spent much of his time this session in the hospital.

Suffering from chronic lung disease and idiopathic pulmonary fibrosis, Norwood received a lung transplant in 2004. Doctors then discovered a tumor on his non-transplanted lung and removed it in 2006. But the cancer had already spread to his liver. And while Norwood considered continued treatment, he ultimately determined, "No, you know what, it's time to go home."

Norwood, whose condition was acknowledged by President Bush in his last State of the Union speech, is said to have been as stubborn in his fight against cancer as he was in this fight for the legislation he thought was important for America.

Cancer hits like a brick wall, takes life of courageous man

I just finished reading the words of Mark Raymond Clements -- and the words of his wife, Marianne, written when Mark was too ill to comment. I am overcome and overwhelmed with emotion because each string of sentences filling the pages of the Clements family homepage has touched me, inspired me, and saddened me all at the same time.

Clements was diagnosed in October 2005 with cholangiocarcinoma, a rare cancer of the bile duct normally found in people in their 70s.

"There is no known cure," writes Clements. "It does not respond well to chemotherapy. It is fast moving."

And fast moving it was. Surgery -- rarely a good option for this cancer -- was attempted but without success.

"After they opened him up, they discovered that the cancer had just spread too far," Marianne writes. "They closed him back up."

Chemotherapy came next and while there were some hopeful moments -- "overall distribution of the disease has decreased" -- the overwhelming course of Clement's disease continued on a fast track. And by June 2006, Clements realized, "the cruel reality of CANCER hits like a brick wall," when a CT scan revealed the presence of as many as 20 new tumors in his liver.

The Clements family never abandoned hope and were steadfast in their faith as cancer continued to dominate their lives. In October -- one year after diagnosis -- when Marianne believed doctors were sending a let's make you as comfortable as we can message, the family began pursuing alternative methods. But by December, when it had become clear treatment of any kind would no longer help, Mark Clements was welcomed by the loving arms of hospice -- where he remained until he passed away on January, 19, 2007. He was 40 years old.

On the very day of her husband's death, Marianne writes, "I know I am not alone in feeling complete anguish at this time. I know it will lessen over time. I know I will not understand 'why' until I'm with him again, but what I do know is that Mark loved me. He loved his children. He loved his family and friends. He will be waiting for me with our loving Father in Heaven. And we will be together again. Our Father in Heaven is aware of our pain and will comfort us still as he has through this past year."

And these are just some of the words that have has touched me, inspired me, and saddened me all at the same time.

Hospice allows pet to stay with owner

A poodle named Lucy refuses to leave her owners side and has become very popular with the nurses and visitors. The patient Maggie Bellamy is staying at the hospice while she is undergoing cancer treatments.

Lucy likes to snuggle up on the rug near Maggie's bed and goes for short walks around the grounds. Ms. Bellamy said "I thought it was incredible when I was told that Lucy could come and stay with me in the hospice. She frets over me, but is very well behaved and everyone fell in love with her. She is good therapy for other patients too."

Lucy is the only dog you will see at this hospice. Dogs belonging to Pets as Therapy also pop in with their owners to visit patients.

Fraser Meek, manager of the hospice in-patient unit, said "We are happy to welcome a patient's pet to be bought along either for a visit, or to stay in the room where possible. Visits from gentle pets help the patients relax and add to the homely atmosphere of the hospice".

What a nice story!

Miriam Engelberg has lost her battle with breast cancer

Years before she was diagnosed with cancer, Miriam Engelberg had planned on creating comics featuring her life as a mother. Instead, at the age of 43, when she was diagnosed with breast cancer, she used cartooning as a way to cope with the shock of diagnosis, surgery, chemotherapy, support groups, and a second cancer diagnosis. A collection of her comics can be found in Cancer Made Me a Shallower Person: A Memoir in Comics.

Reviewers described her book as "a fusion of the deadly serious with the absurd, in the finest tradition of black humor." Readers described her book as an insider's humor for survivors -- funny, heartbreaking and totally relatable in her refreshing take on living with cancer.

The world has lost some of its humor and light and spirit today with the loss of Miriam Engelberg. She took the mundane moments and the challenging trials of breast cancer and through her delightful perspective, encouraged us to see the lighter side. She exposed our private and sometimes silly thoughts and gave us a chance to laugh at ourselves.

There is nothing funny about cancer. It is scary. It is heavy. It is dark. It is full of terror and it steals lives. But, through Miriam's extraordinary talent with pen and ink and cartoon conversation bubbles, we were somehow allowed a brief reprieve from the grim reality of the frightening struggle to survive a profane and inequitable disease that ordinary time makes impossible to escape. In the company of her delicious creativity, we found solace from and in our all too real and immediate reality.

Gina, a close friend whom Miriam trusted to continue her online mail and weekly cartoon publication after she entered hospice care, wrote this evening, "Miriam had her family and close friends with her and was not in a coma. As far as I can tell, she didn't suffer and was spared the intense pain many go through with cancer. I like to think the love, humor and good karma she shared with everyone protected her from the worst aspects of dying."

Our hearts are broken for the loss of the transcending spirit that will always be uniquely Miriam Engelberg. Our hearts are broken for the undefinable loss her family and close friends will endure in her passing from this life. Tonight, our laughter is muffled in a far away place, with Miriam. A part of who we are has gone, with Miriam. In the morning, we will keep her love, humor and good karma close to us in everlasting memory of Miriam. Tonight is full of tears.

Miriam Engelberg: cartoonist entering hospice

10.18.2006: We are deeply saddened that Miriam Engelberg has lost her battle with breast cancer.

Our favorite cartoonist, Miriam Engelberg, who blogs Cancer Made Me A Shallower Person, and publishes the weekly Cartoon of the Week, titles her latest post Bad News. The lack of balance she has been experiencing has been confirmed to be due to a brain tumor, and she will be entering hospice home care.

Miriam Engelberg was diagnosed with breast cancer when she was 43 and decided to chronicle her breast cancer journey in a series of comic strips that have now been collected in the book, Cancer Made Me a Shallower Person: A Memoir in Comics. Engelberg, mother of a then four-year-old, used cartooning as a way to cope with the shock of diagnosis, surgery, chemotherapy, support groups, and a second cancer diagnosis.

She has made arrangements with her web designer to see that her cartoons still appear each week. Engelberg warns they might be in black and white. Normally she colors them in on her computer. Here is her latest cartoon.

Cancer just sucks.

Paris Hilton: plays to paparazzi celebrity charity phony

No one has ever credited millionaire heiress Paris Hilton with being anything but a pro at papazzari primping. Unless you are a Paris Hilton fan -- and if this story is true -- it might not come as a great shock but it is still despicable. The incident being reported involves innocent children.

Seems Ms. Hilton was playing to the cameras and not to the hearts of the children she promised to help at Paradise Kids. While visiting the Gold Coast, she pledged her support to the children battling cancer by staging a benefit concert, stating that "My grandmother died of cancer and I almost lost my cousin to leukemia. It's just something very important to me. I love kids and I just feel it's the right thing to do. It makes me feel good about myself and it helps other people."

According to Paradise Kids co-founder Reverend Dr. Ian Mavor, after the cameras were gone, so was Hilton. Mayor told the news reporter interviewing him that because she made a public vow to raise $250,000 dollars for the charity, it has hurt the Gold Coast Paradise Kids fundraising efforts. He said no one thinks the charity needs money since Hilton is supposedly helping them. This all happened two years ago. Mayor has tried to contact Hilton, but to no avail. Maybe the check is in the mail. Right.

Aggressive treatment for end-stage cancer gives false hope

At the same Atlanta meeting of the American Society of Clinical Oncology where the breast cancer drug Tykerb was touted as perhaps the next wonder drug, findings were also released concerning chemotherapy and end-stage cancer. It seems that many patients in the last weeks and days of their lives are receiving chemotherapy -- when it is clear that there is no hope for survival. Perhaps patients don't want to give up and so they choose to fight to the very end. I think I would be hard-pressed to throw in the towel if a doctor thought I might benefit from continued treatment. Miracles do happen.

Doctors may be part of the problem, though, according to researchers. Patients don't want to give up -- and neither do doctors. But cancer specialists report that overly aggressive treatment gives false hope and puts people though unnecessary suffering and costly ordeals when hospice would be a more effective route. The purpose of hospice -- to help people die with dignity and in comfort -- is ineffective, however, when it's not used to its full potential. A large review of Medicare records showed in 1999 that nearly 12 percent of cancer patients died after receiving chemotherapy in the last two weeks of life. This was up from 1993 -- 10 percent -- and is probably higher today. These individuals could have been peacefully preparing for death and instead were suffering through the trials of harsh treatment.

The solution -- that must be implemented by doctors -- is a willingness to accept that there is a time to stop followed by an honest conversation with the patient whose cancer has spread widely and is incurable.

Another study presented at this Atlanta meeting revealed that some patients are not being offered newer treatments that might truly save their lives. New lung cancer treatments have extended survival from 20 percent at one year to 50 percent, for example. Yet only 11 percent of doctors in one Wisconsin study would refer such patients for treatment.

It would be nice to know for sure that one life is about to end, regardless of treatment, and to know that another might be saved because of treatment. And maybe one day -- when treating cancer is an exact science -- this will be a reality.

Husband blogs memory of wife and a life that goes on

Dori died this past November after a long battle with breast cancer that recurred and spread and ultimately took her from her husband and two young children. I never knew Dori -- she was one of my blog acquaintances -- but I gather from her words and the hundreds of comments that were left on her site that she was full of spirit and courage and grace.

Dori died gracefully at her home, with the assistance of hospice and a loving network of family and friends. She is no longer able to write in her blog -- No Bra Required -- and I miss her abundant strength and humor in the midst of a exhausting journey. But something happened that I think has eased the transition for those who are struggling with the death of a woman much too young to have left this world -- Dori's husband continued to write. He continued Dori's blog for a bit and then started his own personal blog where he shares the peaks and valleys of a life without Dori and with two kids he is raising on his own. Winter to Spring is insightful and touching and sad and happy. It chronicles birthday parties and school plays and Mother's Day too. It reveals feelings and hopes and wishes and sorrows. The tragedy of it all -- the death of Dori -- is devastating. The upside of the tragedy -- the resilience of a family, the lessons learned, the hope for a brighter tomorrow -- keeps me coming back for more. For more of a story that can break my heart and warm my heart all at the same time.

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