Palliative Care Blog

October 11, 2008 is World Hospice and Palliative Care Day. The theme this year is "Hospice and Palliative Care: a Human Right". How will you celebrate?

I'll be celebrating by doing what I love - admitting patient to the local hospice agency I work for. Okay, that probably doesn't sound like much of a celebration but I'm scheduled to work so that's what I'll do. I will, however, make sure to open a good bottle of wine when I get home (woo hoo!).

This week I'll be posting events that are taking place around the world in celebration of the big day. Maybe you'll be lucky enough to show your support of palliative care and hospice by attending one.

World Day Event to Focus on Hospice and Palliative Care as a Human Right

The National Hospice and Palliative Care Organization (NHPCO) and the George Washington University's Public Health Student Association, along with the Foundation for Hospices in Sub-Saharan Africa and the National Hospice Foundation, are hosting a film, discussion, and reception on October 8 in honor of World Hospice & Palliative Care Day 2008.

Where: George Washington University's Jack Morton Auditorium
Media and Public Affairs Building
805 21st Street, NW, Washington, DC

RSVP/Info: Ms. Funmi Adesanya fadesanya@fhssa.org or call 703-647-6684.

Grief is turbulent, unpredictable, and chaotic like a violent storm. When you are consumed in it, where do you find peace? A mother who lost her newborn daughter just hours after birth shares where she found her peace in a story written for the Buffalo News. Andrea Burtis learned her daughter would die when she was only 17 weeks pregnant. She hoped for a miracle and planned for her daughters death with the help of Caring Hearts Perinatal Hospice in Buffalo, NY. Her daughter, Isabel, was born on May 18, 2008 at 11:07 p.m. She died just short of two hours later at 1:05 a.m.

Andrea explains her grief:

The curtain of grief was drawn when we were told she had passed. At the same time, we clearly saw how much we had lost and how much we had gained in the past few months.

To talk about Isabel is to tell a story of seeming paradoxes. Our experience strengthened and humbled us. Our lives were shattered and yet made whole. There is a peaceful center in the eye of grief. It is only by going through the most turbulent part of the storm that one can find that place, though.

Learn more about how perinatal hospice can help families facing the death of their unborn child.

The Littlest of Patients: Perinatal Hospice

Perinatalhospice.org

Be Not Afraid

Thanks to my friends on the perinatal hospice yahoo group for bringing this story to my attention.

Researchers at Massachusetts General Hospital (MGH) are investigating a new treatment for brain tumors - delivering a cancer fighting gene to healthy brain tissue that surrounds the tumor to keep it from spreading. The research has shown promise in lab animals in protecting healthy brain tissue from cancer growth. As with other forms of palliative treatment for cancer, gene therapy won't cure the illness but researchers are hopeful that the treatment will slow tumor growth, prevent spreading, and improve quality of life.

According to the MGH Public Affairs website:

"The researchers first pretreated immune-deficient mice by delivering a gene for human interferon-beta – a protein being tested against several types of cancer – into the animals’ brains using adeno-associated virus vectors known to effectively deliver genes to neurons in the brain without the immune reaction produced by other vectors. Two weeks later, human glioblastoma cells were injected into the same or adjacent areas of the animal’s brains. After only four days, mice expressing interferon-beta had significantly smaller tumors than did a control group pretreated with gene-free vector. Two weeks after the glioblastoma cells were introduced, the tumors had completely disappeared from the brains of the gene-therapy-treated mice."

There are still many questions to be answered and many more studies to be done.

"Since interferon-beta treatment is known to have side effects, it will be important to identify any toxicity caused by long term secretion of the protein in the brain and develop preventive strategies, such as turning off the introduced genes. Next the MGH team is planning to test this strategy on glioblastomas that occur naturally in dogs, which could not only generate additional data supporting human trials but also develop veterinary treatments for canine patients."

I'll be watching this study closely, hoping it is successful.

What is Palliative Chemotherapy?

Palliative Chemotherapy: 5 Questions for Your Oncologist

I've been asked many times why the URL of this site is dying.about.com if my topic is really palliative care. You can see from my last post that palliative care isn't only for the dying so there does seem to be some disconnect between my topic and it's corresponding URL.

This site used to be About Death and Dying with palliative care and hospice only one aspect of it. It contained a lot of fluff - poetry about death, information about pet death, suicide, etc. - that isn't really on-topic with palliative care and hospice. In attempts to re-shift the focus of this site to more medically sound information about palliative care, hospice, and end-of-life care, the powers that be at About.com renamed the site to About Palliative Care and that's where I stepped in.

Unfortunately, the web is a strange and mysterious place which I'm only beginning to understand and the technicalities of changing URL addresses remains a mystery. What I do know is that changing the URL would have been a disservice to the thousands of subscribers and frequent visitors to the site and forum. So, it made more sense to keep the URL dying.about.com.

I hope that clears it up for you curious folks out there. And I hope it doesn't keep any weary prospective palliative care patients from accessing important information about palliative care options.

Hospice is one form of palliative care but unlike traditional palliative care, hospice has specific requirements a patient must meet. First, a patient must have a life-limiting condition with a life expectancy of six months or less. Two doctors are required to sign a legal document stating that a patient will likely die within six months if the illness or condition runs it's usual course. Second, the patient must sign a legal document that states they are giving up Medicare payment for curative treatments and aggressive care for their hospice diagnosis. Medicare pays for hospice under Medicare Part A and won't pay for curative or life prolonging treatment at the same time as hospice.

Unfortunately, these requirements are restrictive to many patients. Sometimes patients aren't ready to give up on aggressive, life-prolonging treatments. Non-hospice palliative care can help many of these patients get expert pain and symptom management without giving up their traditional Medicare coverage.

There are barriers to non-hospice palliative care. Availability of hospital-based palliative care programs are on the rise but may not be available in all areas. Misconceptions about palliative care are prevalent, even among doctors and nurses. As long as the belief that palliative care is only for dying patients persists, it will always be a stumbling block. Another area that is lacking is community-based non-hospice palliative care programs. If home health or hospice agencies expanded the care of their patients to include non-hospice palliative care, more patients could receive palliative care in their home.

How is your area doing in non-hospice palliative care? Does your hospital have a palliative care program? Does your area have a non-hospice community-based palliative care program?

My local San Jose Business Journal recently reported a sharp rise in the number of hospital based palliative care programs in California. The Sacramento area had the highest percentage of hospitals with palliative care programs (67%) and Orange County had the lowest (32%). The report stated that "more than 90 percent of California’s 111 programs surveyed by the foundation were started since 2000, with 64 percent started since 2004."

I was a bit surprised when I read this in the San Jose Business Journal because I've long felt that hospitals in the San Jose area (Santa Clara County) could do a much better job with palliative care. Curiously, there was no mention of how Santa Clara County measured up compared to Sacramento and Orange County.

How does your state measure up? If you have statistics on hospital based palliative care programs in your state, please send them along!

I'm exposed to death often. It's an inescapable consequence of palliative care. I grieve with patients for what they are going through and I grieve with loved ones for what they are losing. But quite surprisingly, I haven't had to face the death of a loved one since I was a child and young enough to skim over the death of my grandfathers as one skims over a frozen pond - able to escape the icy submersion of grief. My luck ran out last week.

My Grandma Connie passed away on Tuesday, September 9th. She had been ill with congestive heart failure for some time and was experiencing a significant decline in recent months. Growing ever weaker, she sustained a serious fall in August that left everyone worried. I encouraged my father to discuss important issues with my grandmother and his siblings; things like advance directives, a Do Not Resuscitate (DNR) order, and starting hospice care. I knew that she would qualify for hospice for her heart disease. I also knew she would qualify for hospice under Decline in Health Status, which is essentially a significant decline in her functional status with corresponding weight loss.

Every time I brought up these issues, I felt like the Bad News Bear. Everyone wanted to stay optimistic and my talk of end-of-life wishes was too much for them. The term hospice to them meant imminent death. It's so easy for me to explain the hospice myths to others and to discuss the importance of planning ahead with non-family members. Discussing them with family seemed only to make them defensive. Throughout her hospitalization and rehab, I was hoping that I would find an ally in her physician, rehabilitation nurse, or home health nurse. None of them stepped up and suggested hospice care.

Grandma continued to make small improvements in the rehab center. She was looking forward to going home, even telling my uncle in her no-nonsense kind of way she was known for, "Get me the hell out of here!". She was told, however that she wasn't strong enough to go home yet. Deflated, she tried to prove her independence by going to the restroom herself, without help. She fell again and fractured her pelvis. Watching her suffer in agonizing pain, my aunt requested hospice services knowing that hospice specialized in expert pain control. My grandmothers doctor declined hospice stating that the rehabilitation home could manage her pain sufficiently. They were able to get the pain reasonably under control but Grandma Connie died just days later, in the rehab facility.

I feel guilty. I think most people feel some level of guilt after losing a loved one. I feel guilty that I didn't write her or call her more often, that I didn't send her more pictures of my family, that I didn't go to the family reunion and the Preston, ID rodeo in July. I also feel tremendously guilty that I, a certified hospice and palliative care nurse, couldn't get my Grandma Connie the expert care and compassion that hospice could have provided and that I couldn't get my father and his siblings the support and care that hospice could have provided them.

I'm passionate about competent and compassionate end-of-life care. It's the reason I do what I do. I put a call out there to all health care professionals, patients, and loved ones to advocate for hospice services. If only a medical professional (one who was not related to the family) would have encouraged hospice care, Grandma Connie could have had a more comfortable and peaceful death in her own home. Her family would have had the support they needed as well.

So, Grandma Connie, I'm sorry I couldn't help you this time, but I'll continue to do what I do to help other families. I love you.

As a nurse, I thoroughly enjoying patient teaching. I think this is one of many things that draws me to hospice and palliative care. There are so many opportunities to teach patients and families ways to improve comfort and quality of life. But, there are also many opportunities for patients and families to teach me.

This past week, I admitted a retired pediatrician to hospice. He was a wonderful man with a remarkable health history. He had been initially diagnosed with lung cancer over 20 years ago and was lucky enough to beat it. His cancer remained in remission until last year when it came back with a vengeance. Hungry to make up for lost time, the cancer spread quickly - to his spine, liver, and brain.

I initially assumed that this doctor knew everything he could possible know about his disease and treatment, including the principles of pain control. I was hesitant to begin the standard patient teaching for fear he would think I was belittling his medical expertise. It quickly became obvious, however, that he was just like any other patient - eager for any knowledge I could impart that might make him feel better.

He wanted to remain in control of his medication regimen despite the fact that he was increasingly drowsy and forgetful. He also wanted to experiment with his medications, "just to see what each one would do". This meant that he wasn't taking his pain medication as scheduled. His erratic use of pain medication lead to uneven pain control and his pain lead to insomnia, fatigue, and over-all poor quality of life.

So, I had the pleasure of teaching this doctor the principles of pain control, including the importance of taking his pain medication as scheduled and keeping an accurate record of all medications taken, and I had the pleasure of learning an important lesson: never assume a patient knows something. Such assumptions may deprive them of a valuable opportunity to increase their quality of life.

What is Pain?

How Often Should I Take/Give Pain Medications?

Tips for Assessing Pain

Tips for Safe Use of Medications

I've been so busy getting my kids ready for school and then getting them settled into their back to school routine that I've had little time for much else. It's evident if you just look at the frequency of my blogging as of late. I feel overwhelmed and buried under the pressure at times.

Luckily, my woes were put into perspective after visiting with a young mother who was getting her four children ready to go back to school and caring for her mother who has multiple sclerosis and is completely dependent on daughter for her care. She is well connected with a church group who have rallied around her to provide support and childcare but the task of sandwiched care giving - caring for children and parents at the same time - is still overwhelming.

So, how can you manage the stress of being a sandwiched caregiver? How do you know if the stress your feeling is normal or if it's leading to disaster? Check out these articles from About.com guides:

Help Yourself Help Others: Caregiver Stress and Burn-Out

Back to School Stress

Back to School Resources and Tips

Common Causes of Caregiver Stress

The New York Times ran a telling article last week about the tough choices involved in cancer treatment. Decisions about aggressive treatment versus hospice care. The report tells the story of Mr. Hill, an 80 year old male with metastatic prostate cancer who is undergoing multiple aggressive treatments in an effort to buy him time.

Mr. Hill seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.

But doctors who have studied patients like Mr. Hill say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.

In regards to chemotherapy and palliative care:

Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.

“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.

The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”

In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.

Next weeks newsletter will include information about palliative care and cancer as part two of a six part series, "The Six Deadliest Diseases". Sign up to receive your copy of the newsletter today.

Read the full article in The New York Times