But That's Not How It Happened On TV!

Elizabeth Uppman

In an interview, author/surgeon Pauline Chen reflects on why, at the end of life, many patients choose treatments and therapies that offer little hope for recovery. She suggests several reasons for this tendency, including this:

There was a study published looking at the outcomes of cardiopulmonary resuscitation on television medical shows. The success rate was phenomenal on t.v., but in reality very few resuscitated patients ever recover fully. These unrealistic media outcomes can influence how patients and their families view life support.

This study points out an obvious truth that is at the same time very strange: that we gather information about the world from TV, and that some of the information we gather comes from stories that we know aren't true. Take me, for example. I would never admit, with a straight face and right out loud, that I expect the same miracle that happened on the hospital show to happen for me in the real-life hospital. But in my gut, in my childish heart of hearts, I'm not so rational. My gut says: If that family on TV got a miracle, then why shouldn't my family get one, too?

So I think Dr. Chen is onto something. And it makes me wonder why. What is it about these shows that makes us trust them?

Maybe because, unlike most TV shows, hospital shows portray events that could actually happen. While you are unlikely to survive a plane crash on a spooky island in the Pacific, you might actually have a heart attack while driving your car down a busy street. And if the accident is possible, then the recovery ought to be possible, too.

But I think we imagine for ourselves the same success stories that we see on "ER" and "Grey's Anatomy" and "House" for a different, more compelling reason: because that is how our stories are supposed to go. Little Red Riding Hood is supposed to outwit the big bad wolf. Cinderella is supposed to marry the prince. And the little girl who almost drowned but was saved at the last minute by a heroic bystander – that little girl is supposed to get better. It doesn't matter whether that little girl is a TV character or a real person. She's simply supposed to get better. That's the way the story goes.

I remember walking into my son Gabriel's room in the ICU and hearing my husband say, "They asked me the question." I burst into tears. He didn't even have to tell me what the question was – I knew it was about Gabriel's death, and I knew it was part of the wrong story. The right story was the one in which the little boy recovers and goes home with his grateful parents and grows up to become a mathematician. I still love that story, actually, though it's no longer mine.

Elizabeth Uppman

Grieving Alone

This article from Connecticut's courant.com discusses how difficult it can be to grieve the loss of a loved one in isolation.

"Adult children who live far away from home and lose a parent; spouses who have retired far from the community where they spent most of their married life together and become widowed; and elderly individuals who experience a loss and have no nearby support system — all can find themselves experiencing grief in a vacuum."

"That isolation, says Karen Carney, a social worker and bereavement program director at the D'Esopo Resource Center in Wethersfield, intensifies the pain and loneliness caused by the death."

"'When no one in your day-to-day life has a history with the person who has died, you have no way to share stories about the deceased and what they meant to your life,'" says Carney. "'When you are physically removed from the individual's final resting place, you have no 'sacred place' where you can go to connect that person. Those situations leave people feeling very cut off.'"

The article also offers some online resources to those who are grieving alone.

"Area hospice and palliative care programs provide programs and support groups. Many local hospitals offer grief support groups. Some are offered by in-house pastoral services, some by palliative care departments and others are offered by social or nursing services. Churches or other places of worship and senior centers often offer support groups as well. If you're not comfortable with a support group, explore individual counseling. The Association for Death Education and Counseling website, www.adec.org, provides names and contact information for grief counselors and educators."

"A number of online resources offer help as well. At www.webhealing.com, visitors can find articles on loss, links to resources, discussion boards and an "Honor Page," where visitors can post memorials to those they have lost and share thoughts on grief and healing."

Providing Culturally Sensitive Nursing Care

Marilyn Hardy Bougere, MSN, RN, CNS, a nursing instructor at Jacksonville State University in Alabama, provides an article for MinorityNurses.com, addressing how understanding how cultural difference effect a patient experiencing grief, can enhance nursing care. The article itself provides an excellent review of some older literature. Following the article, there are two fictionalized case studies about providing culturally and linguistically competent nursing care. HFA's 2009 Living with Grief teleconference will focus on multiculturalism and end-of-life care.

"As the racial, ethnic and cultural diversity of the U.S. population continues to increase, there is an ever-growing need for the health care profession to become culturally competent in all aspects of care delivery—and this includes the care we provide to grieving patients and their families. A recently published article on cultural diversity and grief states that the need for culturally sensitive grief/bereavement educators and counselors is on the rise and that health care providers must continue to expand their knowledge of the many ways that people grieve."

Barriers to Pediatric Palliative Care Examined

Pallimed reviewed a recent article from the journal Pediatrics on how health care providers perceived barriers to palliative care. The researchers surveyed 689 health staff at UCSF Children's Hospital (117 nurses, 81 physicians, and 42 staff from a variety of other disciplines responded.) The top two barriers identified by staff were, first, uncertain prognosis and second, family not ready to acknowledge incurable condition. Pallimed's Christian Sinclair, MD, points out that, "These two reasons are intimately related and are joined by the skill to adequately communicate medical information, probabilities and uncertainties, and the ability (for staff and patient/family) to hold out for hope but accept the probability of decline."

POLST Orders May Be Coming to Washington State

The House in Washington state passed a bill that would establish POLST forms (Physician Orders for Life-Sustaining Treatment) that would allow individuals to express their end-of-life wishes. The bill is now headed to the state Senate. From The Seattle Times,

"House Bill 2494 directs the state Department of Health to develop a simple form that spells out a person's preference regarding emergency and life-sustaining treatment. The legislation also limits legal liability for health-care providers who act in accordance with the preferences expressed on the form."

"'For health-care providers in a medical emergency, it is a standard and understandable practice to do everything possible to save a person's life,' said Rep. Jim Moeller, D-Vancouver, who serves on the House Health Care and Wellness Committee. 'But the Physician Orders for Life-Sustaining Treatment form recognizes a basic truth: People have a right to personal feelings that don't necessarily fit with that practice.'"

Read our other posts about the POLST form.
http://www.hospicefoundation.org/blog/2007/12/why-talking-about-end-of-life-issues-is.html

http://www.hospicefoundation.org/blog/2007/11/states-looking-into-developing-new-end.html

http://www.hospicefoundation.org/blog/2007/12/oregons-polst-orders-are-going.html

Recent Study Suggests Dementia and Other Cognitive Impairments Are on the Decline

The results of a national study showing a downward trend in the rate of cognitive impairment among Americans aged 70 and older were widely reported yesterday. The term 'cognitive impairment' is used to cover those suffering from significant memory loss and different types of dementia, including Alzheimer's disease. The study from the journal Alzheimer’s and Dementia was produced by a team of two University of Michigan Medical School physicians and their colleagues. An excerpt from the University of Michigan press release:

"The prevalence of cognitive impairment in this age group went down by 3.5 percentage points between 1993 and 2002 -- from 12.2 percent to 8.7 percent, representing a difference of hundreds of thousands of people."

"And while the reasons for this decline aren't yet fully known, the authors say today's older people are much likelier to have had more formal education, higher economic status, and better care for risk factors such as high blood pressure, high cholesterol and smoking that can jeopardize their brains."

Read coverage of the study reported by the Seattle Times, Boston Globe, and Science Daily. Carol Bradley Bursack, eldercare columnist for OurAlzheimers.com, writes about how seemingly conflicting studies can confuse the general population. (In October 2007, The American Academy of Neurology released a study indicating that among people who develop dementia, those who are more educated lose their memory at faster rate.) Bursack writes:

"One thing these studies all seem to agree on is that people shouldn't quit learning. Exercising one's mind and caring for one's physical health seem to be key to remaining as healthy as possible, overall. Keeping an active mind and body are not guarantees that dementia will not strike. But keeping our minds active and our bodies as healthy as our genes will allow are somethings we can do that certainly will not cause harm, and doing these things can give us hope that we may remain dementia free, or at least put off the effects for a longer period of time. There will always be exceptions, but why not try?"

"The study is also realistic in noting that the sheer numbers of elders who are (and will be) living longer ensures that we will be fighting Alzheimer's and other dementia for years to come. Nothing is 'licked' yet. However, any good news on this front is welcome to we who are on the leading edge of baby boomers, and to our children."

Another Recall Notice - Fentanyl Patches

Actavis Inc., the United States manufacturing and marketing division of the international generic pharmaceutical company Actavis Group, has announced that 14 lots of fentanyl transdermal system CII patches sold in the United States by Actavis' subsidiary Actavis South Atlantic LLC are being voluntarily recalled from wholesalers and pharmacies as a precaution. They include:

Actavis Fentanyl Transdermal System, 25 mcg/hr.
Actavis Fentanyl Transdermal System, 50 mcg/hr.
Actavis Fentanyl Transdermal System, 75 mcg/hr.
Actavis Fentanyl Transdermal System, 100 mcg/hr.

Anyone with Actavis Fentanyl transdermal system patches with the above listed lot numbers should call 877-422-7452.

For more detailed information, please visit the FDA Recall Notice.

A Team Approach to Reducing Bedsores in Nursing Homes

Today's New York Times reported on a collaborative program carried out by 52 nursing homes around the country, sponsored by the Centers for Medicare and Medicaid Services. The team effort, involving not only nursing staff, but laundry workers, nutritionists, and maintenance workers, reduced the incidence of severe bedsores (medically known as pressure ulcers) by 69 percent. Experts say two million Americans acquire pressure ulcers each year.

"Dr. Horn, of the Institute for Clinical Outcomes Research, praised the collaborative as 'the first major national effort driven by Medicare to reduce pressure ulcers.' But she said that better outcomes could be achieved if more nursing homes improved their documentation, so that all of the information on a given resident, including details on eating, urinary and bowel function, appeared on a single sheet, with key reminders to nursing assistants and other staff members about best practices.

Institutional change and work-flow redesign are critical, she added, given the high rates of turnover in nursing home staff across the country."

High School Newspaper Reports on Student Reaction to Celebrity Loss

A high school reporter examines why teenagers are often very affected by the death of a favorite celebrity. From the article:

"Teen psyche supports an attachment to faraway celebrity figures and makes their deaths all the more real, according to Carolyn Barry, an associate professor of psychology at Loyola College. Barry reasons that the teenage demographic is the most interested in popular culture. 'Research has documented that adolescents become oriented towards the larger peer and popular culture to a greater degree,' Barry says, noting that the distinction is especially true between teens and elementary school-aged children."

"Furthermore, the progression of technology has played an important factor in allowing teens to feel such a personal bond with their favorite celebrities, according to Barry. 'Given the reality of living in an age of information technology, adolescents can – and many do – gather tremendous amounts of detail about celebrities,' Barry says. 'As a result, these…adolescents might perceive themselves as having formed a relationship with these celebrities, even if it is just a one-way relationship.'"

If you're interested in learning more about how teens experience loss, attend HFA's national teleconference on April 16th. The teleconference is broadcast at sites across the U.S. and Canada. Registered sites can be found on HFA’s Find-A-Site database, located here. This list is updated on a weekly basis so if there isn’t a site near you, please check back in a few days.

Important Recall Information for Caregivers: Duragesic Patch

The American Pain Foundation announced an important recall on their website we wanted to share.

"On Tuesday, February 12, 2008, PriCara, the manufacturer of transdermal fentanyl (Duragesic®), announced that supply lots of their 25mcg/hr patches were recalled due to a flaw in the cut of one edge. To be aware that some patches may unintentionally expose patients directly to the medication gel (because the integrity of the barrier could be compromised), these lots as well as those manufactured by ALZA and sold by Sandoz have been voluntarily recalled to remove them from the market place. Other strength patches (12.5, 50, 75 and 100 mcg/hr) are not affected."

Resiliency in the Face of Trauma - Study Examines Impact of 9/11 on Children

Dr. Kenneth J. Doka

The New York Times recently reported on a study completed by researchers from Mount Sinai School of Medicine and the Jewish Board of Family and Children's Services in New York on the effects of 9/11 on 116 children who had witnessed the attacks. These children ranged in age from one to five years old at the time of the attacks. The study found that the children who had still experienced residual trauma from the events were those who had experienced some prior trauma, even a minor one as a dog bite, in their lives.

The Times piece rightly emphasized the significance of this finding – that early exposure to trauma makes one more sensitive to subsequent events. Yet, there is an understated complement to this article that affirms the natural resiliency of children. It is amazing to note that even after witnessing horrific acts such as people jumping off buildings, most of the children were able to go on with their lives with surprisingly little effect.

This resilience is supported when parents are open to communicating with the child. When a child experiences or witnesses a traumatic event, parents do well to allow the child opportunities to talk about the experience, ask questions, and express their range of reactions. Parents can model the ways that they respond to such events and share their own coping strengths. It is important to be honest yet reassuring. In the aftermath of 9/11, I was part of a panel interviewed on a radio show. We were asked how would we respond to a child’s question, "Will this happen again?" One psychiatrist suggested we might reassure the child, answering that such an event would never again occur. My response was different – emphasizing to the child all the ways we were seeking to prevent such a reoccurrence. Honest communication supports and respects the strength and resilience of children.

Dr. Kenneth J. Doka

Note from HFA: This April, HFA is hosting a national teleconference focusing on the experience of grieving children and adolescents. The program and accompanying book will focus on the most current theories and practices in this area, combining academic research with hands-on ideas for use in hospice support groups and other settings.

AGIS’ New End-of-Life care Section Features Hospice Foundation of America as New Expert Resource

Caring for a loved one who is terminally ill can be the most emotionally challenging time in life, and AGIS Network (www.agis.com) seeks to aid caregivers and loved ones with all the emotional support and informational resources available. We have just added to our site a new end-of-life care section featuring the Hospice Foundation of America as our expert resource.

Hospice care provides families with ailing or dying loved ones with a team of professional help to bring physical, emotional and spiritual comfort to everyone involved. Although the focus shifts from curing the illness to providing comfort and care, a great deal can be done to support the caregiver and their loved one during this challenging time. The End-of-Life section adds yet another crucial resource to the comprehensive information available on the AGIS website.Caregivers, family, friends and loved ones can find help for all aspects of caregiving, from legal and financial planning to specialized care for specific conditions such as Alzheimer’s Disease. The Carestation blog and AGIS online community offer interactive forums for people to share their individual experiences for mutual understanding, learning and comfort.

Hospice care is founded on the philosophy that each and every one of us deserves to die with dignity and comfort. Through mutual understanding and respect, families and loved ones can utilize the appropriate end-of-life care options for their family’s specific needs.

Our hospice overview can be found here.

For emotional support and strategies to help deal with the loss of a loved one, our grief and loss information section provides the best available tools for families in their time of need, see here.

Hoping To Give Back To Hospice

Hi, my name is Donna Fontenot (known on the Internet as DazzlinDonna) and I have a hospice story to share. Six years ago, my mother was diagnosed with lung cancer. Despite the many rounds of chemo and various attempts to stop the spread of the disease, it quickly became apparent that the disease had progressed too rapidly for treatment to be of any use. We were dealt the blow that the end was near, and hospice care was suggested.

It took a little time to let the realization sink in, and to grasp the real significance of what hospice really meant. At first, it felt like giving up, but it only took one meeting with the hospice angels to understand how important this would be.

I call the hospice staff "angels" for good reason, and without any specific spiritual connotations attached. I envision them as true angels on earth, because without exception, each one that dealt with our family was indescribably "good". Really, there are no words to explain what I mean, but if you can imagine your version of pure goodness wrapped in a person, you'll come close to imagining the hospice angels.

Our angels accomplished two incredible things in the short time they cared for my mother. First, and most importantly, they gave Mom peace and allowed her to leave us with dignity. They made her feel comforted and comfortable. They eased her physical pain and treated her with an incredible amount of gentle emotional care. Second, and nearly as important, they gave us, the family and caretakers, the understanding we needed. They were there for me when I needed to grasp the reality of my mother's pending death. They helped me understand what to expect at the various stages of her last days, which greatly eased my anxiety. Quite simply, they were angels to my mom, to me, and to our entire family.

I've often thought of my hospice angels since then and have always wanted to be able to give something back. I can never thank them enough, but perhaps I can contribute a little something along the way. To that end, I've chosen the Hospice Foundation of America as my charity of choice in a project in which I'm involved. I am a search engine optimizer (SEO) by occupation, and a few fellow SEOs have joined me in a two month weight-loss charity event. The public is invited to watch as we share our weight loss struggles at SEOsFightFat.com. The winning SEO (the one who loses the most weight), gets to choose the charity that will be receiving all sponsorship funds. I'm trying very hard to be that winner, because I would love to see those donations sent to HFA. It's a small thing, but my efforts to win are my small way of saying thank you to our hospice angels.

Technical Note about the Hospice and Caregiving Blog

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Racial Differences in the Decision to Revoke Hospice Care

Pallimed's Drew Rosielle, MD, writes about a recent article from the Archives of Internal Medicine, which examined data from 167,000 patients being served by a multi-state hospice group over a five year period. The patients included in the study left hospice care while still alive, a small percentage of whom went on to pursue aggressive treatment. The interesting note, is that African-Americans had 70% higher odds of making the decision to pursue aggressive care than whites.

Discussing Caregiver Stress Syndrome

The CareStation blog on AGIS recently opened up a discussion about a CNN article on "caregiver stress syndrome." Readers can join the ongoing forum discussion: is having an official diagnosis to describe the effects of caregiving helpful to the caregiver?

Share Your Caregiving Story with PBS

We're passing along an invitation posted on CaregivingBlog, from a PBS station. They are collecting short video stories from people who have care for elderly family members, and want to know how it has changed their lives.

Grief Support Group Helping College Students Across the Country

The University of Washington (UW) is starting a chapter of the National Students of AMF (Ailing Mothers and Fathers) Support Network. The organization's mission is to ". . . to support all college students with an ailing or deceased loved one, empower all college students to fight back against terminal illness, and raise awareness about the needs of grieving college students. . .by developing chapters of Students of AMF on college campuses nationwide, providing information and support through our website, awarding leadership scholarships, distributing research grants, conducting conferences on college student bereavement, and holding fundraising events. . ." This article from UW's campus newpaper, discusses why two students are starting the local chapter there and how it will help fellow students in the grieving process.

Using Photography as a Palliative Care Tool

Social worker Marilyn Peck has been honored for her program, "Life Through Pictures," which uses photography as a palliative tool end-of-life care.

"The concept. . . uses the power of visual imagery to stimulate patients to do mental 'life reviews.' In these reviews patients talk about their memories and in so doing find clarity and peace in the final chapters of their lives.

'When an individual comes to the end of their life, a lot of times there are a lot of pieces that need to be pulled together,' Peck said. 'My goal is that if they see what they have done, their regrets will diminish, their peacefulness will grow.'"

Simple Caregiving Technique Helps in Dementia Care

An interesting post on The Dementia Caregiver's Toolbox blog, about using the "hand-over-hand" technique to help assist dementia sufferers to complete tasks. An excerpt:

"You, as the caregiver, put your hand over the hand of the person who has dementia and gently guide them to the activity at hand. If the task is walking, you would put your hand over their hand and slowly lead them down the hall, maybe clasping both your hands around their hand. If the task is stirring the cookie batter, you would put your hand over their hand and "show" them the motion used to stir and do it with them. You can use this strategy for helping people get in and out of chairs, brushing teeth, turning on televisions, combing their hair, you name it."

Pennsylvania's Efforts to Increase Hospice and Palliative Care for Children

A follow-up to an item we posted Jan. 14, The Philadelphia Inquirer reports on a Pennsylvania task force that is examining ways to eliminate barriers to children receiving hospice and palliative care. From the article:

"Some of the goals the task force is considering would require legislation or the redrafting of state regulations.

For instance, federal regulations now permit reimbursement for hospice care only if a child is given six months or less to live, and if the family forgoes any further intervention. Many private insurers follow the federal model.

And that, hospice advocates say, puts families in the position of making the choice between hospice and painful, and possibly fruitless, hospital treatments.

Some states, such as Colorado and Florida, allow children to receive hospice and palliative care simultaneously with traditional medical treatments.

That is not the case in Pennsylvania, and the task force is examining what it can do to change that."

Music Therapy Included in End-of-Life Care

This Associated Press article reports on the increase of music therapy as part of end-of-life care, both in hospice and hospital settings.

According to Al Bumanis, director of communication for the American Music Therapy Association, there are 250 music therapists in the country whose practice is devoted to the terminally ill. There are currently 5,000 board certified music therapists in the United States.
"Music therapy in hospice continues to trend upward, and historically mirrors the general boom in hospice care seen in the country," Bumanis said.

Place for Palliative Care Professionals to Discuss Ideas

The Center to Advance Palliative Care (CAPC) launched new discussion forums last month. Check them out!

The Center to Advance Palliative Care (CAPC) provides health care professionals with the tools, training and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings. CAPC is a national organization dedicated to increasing the availability of quality palliative care services for people facing serious illness. Direction and technical assistance are provided by Mount Sinai School of Medicine.