According to a group of experts and a recent review in The Lancet, more research is needed into pediatric palliative care.

The review looked at various challenges facing pediatric palliative care. The first was defining pediatric palliative care along working towards a better understanding of the needs of children receiving such care. Understanding the culture of the patient is a critical part of improving pediatric palliative care according to the review. For example, being honest about an impending death may go against culturally-prescribed roles of parents as protectors in some cultures.

The review also addressed health care provider burnout and lack of smooth integration of pediatric palliative care knowledge into training programs in medicine and nursing.

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.

Findings from a Brown University study reported in the Journal of Pain and Symptom Management show that family members sometimes feel that the referral to hospice was too late to deal adequately with the patient's needs. However, out of the over 100,000 family members who were surveyed, 87 percent said that their relatives received appropriated timed referrals and 11 percent thought the referral was too late.

The study also found, that despite the families' perceptions of the timing of the referral, days actually spent under hospice care were quite short. The study found that 58 percent of patients spent less than 30 days in hospice care and about 32 percent spent 7 days or less. Dr. Joan Teno told Reuters, "Despite a very short length of stay, the majority of hospices are providing excellent care. They do a wonderful job of 'rallying the troops' in the middle of the crisis to provide the needed intervention in a short time frame."

Family members of patients who were referred to hospice "too late" also were more likely to report needs that went unmet. Nearly 19 percent of such family members cited a lack of emotional support and 41 percent felt uninformed about what to expect.

Dr. Teno said, "Ultimately, we need to educate the public about the benefits of early hospice referral so they can get the full benefit of hospice services and not just an intense intervention in the last days of life."

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.

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.

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

"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.

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.

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".

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.

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.

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.

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!

Although these are important issues year-round, November is the month dedicated to raising awareness about lung cancer, family caregivers, hospice care and the very important marrow donor program.

Lung Cancer Awareness Month is a national campaign to raise awareness about lung cancer. In addition to facts and resources, the Lung Cancer Alliance (LCA), a patient support and advocacy organization, hosts the Faces of Lung Cancer Campaign on their website featuring photos of those lives that have been touched by lung cancer.

According to facts presented by LCA, lung cancer will kill more people this year than breast cancer, prostate cancer, colon cancer, liver cancer, kidney cancer and melanoma combined. Lung cancer will kill three times as many men as prostate cancer this year. Lung cancer will kill nearly twice as many women as breast cancer this year. Although smokers are diagnosed with lung cancer, not all lung cancer patients smoked before being diagnosed. Visit LCA for ways to get involved in the month-long campaign to bring attention to lung cancer.

To read our posts about lung cancer, visit Lung Cancer.

National Family Caregivers Month is a way to say thank you, show our personal support and create community support, and help educate the public about the issues and realities caregivers face each day they lovingly care for a family member or friend in need of care.

To caregivers, Suzanne Mintz says, "If we believe in ourselves, protect our health, reach out for help, and speak up for our rights we can each improve our day-to-day lives, but also together we can change our healthcare system and our society to make it more responsive to the needs of families dealing with chronic illnesses and disabilities." The National Family Caregivers Association (NFCA) is an organization that supports, empowers, educates, and speaks up for the more than 50 million Americans who are caregivers.

To read our posts about caregivers, visit Cancer Caregivers.

National Hospice Month is a campaign to raise awareness of hospice care in honoring the terminally ill and their family members during a difficult time and creating the most comfortable home or home-like environment possible. The first hospice began in 1974 with the Connecticut Hospice providing palliative care using the combined knowledge and skill of a team of physicians, nurses, medical social workers, therapists, counselors, home care aides and volunteers. To learn more about hospice care, visit the National Association for Home Care and Hospice.

National Marrow Awareness Month brings public attention for the more than 50,000 Americans each year who are diagnosed with leukemia and other blood diseases and are in need of a bone marrow or blood stem cell transplant in order to survive. To learn more about this program, and how you might be able to help, visit the National Marrow Donor Program.

Fighting for Our Future:How Young Women Find Strength, Hope, and Courage While Taking Control of Breast Cancer. Beth Murphy spent two years studing young women with breast cancer and her book gives young women a valuable resource.

Fighting for Our Future talks about many issues related specifically to women under forty diagnosed with breast cancer. Some of this issues are fertility, pregnancy, negotiating treatment, living with the illness, sexuality and dating. It reaches out to the newly diagnosed and those living with metastatic disease to all in between.

Breast Cancer patients tell their own stories throughout sections of the book. They decribe treatment and procedures and give the real information that the young women need to know.

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.